Hummingbird, Don't Fly Away

Missing Mom

2012-02-15T12:40:00.000-08:00

I miss Mom. She's been gone almost six months. I could talk to her about anything. She wasn't domineering. We just got along very well, like best friends after I grew up, married and started my family. If I got in a jam, Mom was there to help me. If I wanted to go somewhere, she always said she just needed time enough to pack a bag and we could be on the way. We quilted our first quilts together. I don't think I could have done it without her. We made "cabbage patch" dolls for my daughters, Beth and Christie, and for ourselves. We did a lot of things together. If I was upset about something between my husband and me, I used Mom as a sounding board to make sure I was being fair to him. After all, my goals in marriage were to ALWAYS be a good wife.

In less than two hours time the world seems to have fallen apart. My world. It's been happening for a while. Mom and her two living brothers passed away in 2011: Uncle Ed at the end of February, Mom in August and Uncle Dale in early October. One of my adult children walked out of her marriage, nuf said. Now, another broken romance, my paycheck that for nearly 12 years has been direct deposited is no longer being direct deposited and nobody bothered to tell me about it so I don't get a payday today...and my husband gets his back up because I asked why he didn't do a menial task here and he's going to pack his stuff and leave. "Ya do what you have to do," I said. He's downstairs playing pool. I guess I'll have to fix the stupid window myself. Then I can go to Home Depot and find out how to run new water lines from the source to the water heater to the taps so I can have hot water in my kitchen after a year of living in the early 19th century instead of the 21st. And when the weather is warm enough I can get the materials and reroof the garage so it doesn't rain inside the garage as if it were outside. At this point I'm not sure why I have a man in my life.

My attitude needs a great adjustment. I am uncertain how to make that happen. And Mom is six months gone. I can go to her grave site and talk to her, but she isn't going to talk back to me. I am the matriarch now. And I don't have the answers we all need. Geez. How do I fix this?

Clarity

2012-01-03T11:45:00.000-08:00

There are statements my mother made that struck me at the time she spoke them and now, months or years later those things still strike me. Perhaps I should write my mother's story for posterity, that is, for future generations. (I wish you could see the whiteout on the other side of my window as I type this.)

When I went back to college (2007-2009) I learned that "history" was the story more of "mankind" than "womankind." Often women have not been important enough to be mentioned by name, perhaps because of the shame of her actions that is being told? Or because someone is intimidated by her intelligence? Who knows for sure why women are less likely to be named in history? Of course, Cokie Roberts got my attention with her book, Founding Mothers: The Women Who Raised Our Nation.

Remember Lot's wife? She's the one who looked back and was turned to a pillar of salt. She didn't have a name. At least, she was not named in those scriptures.

And when you took history in public school, what did you learn about Benjamin Franklin? Did you know his wife's name was Debra? Did you know he went to Europe and lived as a diplomat for 12 years, never visiting Debra in Philadelphia, Pennsylvania USA where she oversaw his business ventures? That the only reason he returned then was because she was dead? You can read it in Cokie's book.

Women's stories DO need to be recorded for the generations of women who follow those women. How did women arrive at this modern moment in time? What did they have to suffer through simply to survive? What sacrifices did they make--have to make--to enable today's women to enjoy the opportunities that are available?

I don't know everything about Mom's life, but with my knowledge and with the assistance of recorded history, recorded herstory, perhaps I can create a composite of the chutzpah of women who have been dominated by patriarchy and rose above it. (My doctor tells me that "we don't live that way any more." I didn't say I agree with him.)

My mother did a lot of things, but she never realized the dreams she aspired to, was born to. Perhaps through me (her daughter), her granddaughters, the women who knew her, her dreams may be realized to some degree, to inspire the Self to strive for the greatest potential regardless of the biology of the body.

"You can do anything you want, achieve what you want, if you're willing to work hard to achieve it."

When did Mom become so tired? When did she realize there was no point in fighting any more because she wasn't ever going to win?

How can it be a complete white-out one moment, and just less than a second later the sun be shining and the red brick of the house across the street so sharply defined?

(c)2012 Cathy Thomas Brownfield ~ All rights reserved.

On learning about life

2011-10-30T09:31:00.000-07:00

Lessons are learned from the people who populate our lives. As children we learn from the adults who influence us. As adults we learn from the children we have influenced through their lives. We learn about who we are—or not—from the people with whom we have relationships.

My mother always made remarks that stopped me in my tracks…thought-provoking remarks. Some took me by surprise because I never would have seen them coming. Some were spoken soft and low, the two of us alone in my car, as if she were afraid God would hear and condemn her to Hell.

Mom was somewhere in the middle of her Alzheimer’s journey. She drove her car to my house to pick me up, probably to go shopping. And she said to me, “You can drive if you want to. You probably don’t trust me to drive.” She found her way to my house. I wasn’t afraid to ride with her. And I told her so. But the day did come when we had to take her car keys from her. She was SO angry about that.

“I’ve been driving since I was 16 years old,” she argued. “Much longer than you…You’ll know how it feels when your children do this to you.” I recognized the Alzheimer’s doing the talking.

I still can’t understand why Dad took her to renew her driver’s license the last time. Unless he thought the BMV wouldn’t renew her license. But they did. So we had to take on the responsibilities of protecting Mom and everyone around her who might be hurt if she drove her car.

I never felt like we did role reversal. I was never her mother. I was her daughter. I knew her, how she did things, what she expected, so I let her make decisions but used my own common sense to assure they were viable decisions with good consequences. She was satisfied that she had some control over her life.

I think about my abilities, when I will have to relinquish my driving privileges. (Driving is not a right. It is a privilege. And when we can no longer drive safely we must give up our keys, our cars, and rely on younger drivers who are safer drivers to get us where we need to go.) I’d like to own one more new vehicle and travel a lot before I have to give up those privileges. I may even have time enough to own two new cars.

A young woman, grown tired of neglect and emotional cruelty from her husband resolved to leave, “I am almost 40 years old. I only have one life. I’m not going to waste any more of it!”

An older woman asks, “How do you break promises to God?” And is told the promises were made to a man, not to God. And, anyway, it’s hard to comprehend the hold of patriarchy over a woman who has been neglected and unhappy for years but cannot bring herself to leave the unhealthy relationship even though she has been informed that God doesn’t want his children to live in a state of unhappiness. And the husband has broken his vows so their contract is null and void. But, but, but, she could be happy if her husband would be the man he needs to be…that she needs him to be. She can’t change him. And he’s not going to change. What is she going to do?

On Sunday I clicked a link to a story with this headline: “Thoughts of God make us slackers, study suggests.” (http://www.livescience.com/16784-thoughts-god-motivation-temptation.html). Why? “People ‘behave’ because God knows when they’ve been bad or good. Being reminded of the presence of an all-knowing God helps people resist temptations for fear they will be ‘caught’ by God and punished…”

THAT is patriarchy.

Making ends meet

2011-10-21T19:51:00.000-07:00

There are just some things you need to say, but you keep them bottled up inside. You don’t want to upset anyone. You want to keep your ship steady as she goes because the world around us is filled with so much chaos and you think if you can just adjust this, tweak that, you might be able to fix your little parcel of the world and all will be well.

But at this moment chaos reigns and there doesn’t seem to be a way to mend fences, reconcile differences, heal broken hearts, and get feet on solid ground. Winter is uncomfortably close, expected to be long and cold. When the buzzards depart Nov. 1 to winter in the south, maybe I wish I was flying away with them. Things that should have been taken care of weren’t. No garden, no harvest. I really wanted a garden. I wanted to put up tomatoes, freeze peppers, make jams and jellies beginning in June with strawberries and working my way through the fruit seasons. Someone has to clean out the rain gutters on the house where trees have begun to grow. Someone has to caulk the windows to keep out the cold of winter. Someone needs to patch the garage roof, find the reason why the security light kicks out the breaker every morning when the light clicks off, cut the dead branches out of the oak tree and that’s just the outside work.

I was searching online for information about senior resources and ended up researching a news headline: “Report: Drug dealers buying prescription painkillers from Ohio senior citizens.” It sounds like there are folks who have it worse off than the rest of us. Seriously? Selling their potent prescription painkillers to street dealers??? The Ohio Substance Abuse Monitoring Network reported, “Drug dealers around Ohio are developing new sources for prescription painkillers by buying them from senior citizens, sometimes as the patients leave pharmacies.” The said report “shows Ohio’s prescription painkiller epidemic is continuing and in some cases, may be getting worse. (http://blog.cleveland.com/health_impact/). The release is dated Oct. 4, 2011. “The network cites reports from Dayton, Toledo and Youngstown of drug dealers buying painkillers from seniors WHO OFTEN NEED THE MONEY TO MAKE ENDS MEET.” (Emphasis mine.) And that reportedly is the Youngstown area.

The drug dealers convince the seniors to go to the doctor, fake pain, get prescriptions for Oxycontin, etc., then take them to the pharmacy to get the medications, and then pay them for the drugs. I can’t…comprehend…This is the literal “last resort” to providing for an individual’s needs??? Why does this smack of irresponsibility? Drug dealing is illegal! Conscience—doesn’t anyone know anything about conscience and honor and doing the right thing? What if their own grandchildren were on the receiving end of those medications…and something terrible happened? Of course, they would never know. Not seeing the faces of the people who will use those drugs makes it alright?

Yet another news story caught my eye over the weekend. More Americans than Chinese are going hungry. Makes me ask if Washington DC really thinks we believe the Great Recession is subsiding. Really? As hard as some have worked to “dumb down America” maybe we’re smarter than “they” think. So, how are we all going to survive the winter?

I started out this blog entry complaining about the windows that weren’t caulked, the garden we didn’t grow, the tree branches, long dead, that fall to the ground when a gusty wind hits them just right.

Respect is Earned

2011-10-14T06:37:00.000-07:00

Mom insisted we should have an honor code. We would respect our dad because without him we would not have been born. We would be courteous, considerate of others and we would keep our troubles to ourselves because everybody has problems and they don't want to know about ours. If we look around, we can always find someone worse off than we are. Mom insisted we should live by the Golden Rule: Treat others the way you want to be treated.

Respect. That's what I've always wanted, to be respected. But it isn't something that is due us, a right. It is something we must earn. We earn respect through everything we say and do. That's a great lesson for young people, but how does it apply in the outside world?

The 1960s was a great time to grow up: the love generation. Or maybe as 1969 rolled around everything at our house was measuring up to the American Dream. Mom had always told me I could do anything I wanted, achieve anything I wanted to do if I was willing to work hard. It wasn't about biology, gender. It was about ability. And she believed I was loaded with ability, qualities I didn't consider special. Wasn't everyone like me? Wasn't I just human like everyone else? I really didn't think there was anything special about me. Besides, boys didn't like girls who were smart.

No, Mom said. I couldn't expect everyone to perform at the same level as me because everyone doesn't have the same abilities I do. I needed to be patient with those who aren't as capable as me. Some people misread me. They thought I was arrogant. (If they only knew!) But actually, don't my children deserve to have good things, too? What is different about their desires for their children and my desires for my children? That makes me arrogant? Oh, well. I digress.
l
The late 1970s were...hm...well, I remember when the steel mills in the industrial heartland locked their doors. I felt terrible for the families who lost everything they had worked for all of their lives. I thanked God it wasn't us. Oh, but I--and many around me--was about to learn some valuable lessons in economics, things like "trickle-down" and "ripple effect." When the mills closed, all of the industry that relied on domestic steel was hit. Domestic steel couldn't match the affordability of the Japanese imports. (Thanks, Uncle Sam in Washington, for giving away the store.) By 1991, my husband's job was on its way to Romania in Eastern Europe. (And you thought the loss of jobs to overseas markets was something new in the new century.)

With no paycheck we couldn't spend. The stores, businesses and professions, with no customers, began to fade away. Population dropped from 112,075 in 2000 to 107,841 in 2010, according to the U.S. Census Bureau as of June 3, 2011. Some other data from the county's census report include: 84.5 percent of 25-year-olds and older are high school grads, 11.8 percent hold bachelor degrees. The per capita income (2009 dollars) is $19,785; median household income, $38,004. Persons below poverty level, 16.4 percent in the county (17,686) at a time when the state poverty level is at 15.1 percent. Women-owned firms in Columbiana County are 28.1 percent and 27.7 percent in the state. Of the $90,592,062 federal dollars sent to Ohio, only $755,832 of it came to our county (2008). The land area of Columbiana County is 532.46 miles. Population is 202.5 persons per square miles (2010).

Admissions at the Kent State branches in Salem and East Liverpool go up when jobs go down. But when they complete their education, do the students stay or do they leave to follow the jobs? It looks like they leave. And what does that do to the fabric of the extended family?

What does all of this have to do with respect? There are different forms of respect, the most important being self-respect because if you don't feel good about yourself, how can you see good in others or in the world around you? When the jobs went away, people were robbed of their self-respect when they could no longer take care of their families and their obligations. When they were told they did not qualify for foodstamps so they should buy food and not pay their bills--AND THEY WERE--how do you suppose they felt? What did they think? Feel? How did they respond?

Yes, this blog entry is all about respect when you read between the lines and walk in the other man's skin for a while.

Funny that I found this article just hours after writing this blog entry. Maybe you will want to check this out: http://news.yahoo.com/blogs/lookout/more-americans-chinese-t-put-food-table-132752601.html

Next time: To Kill a Mockingbird...What is Courage?

(c) 2011 Cathy Thomas Brownfield--ALL RIGHTS RESERVED. Why am I so sure that someone somewhere on the planet will think the copyrights that belong to me don't apply to them? If you are interested in using my words, please contact me for permission.

Recovery Begins

2011-10-13T13:23:00.000-07:00

I recall some things my mother said, things that are very important to remember. These things are so important that I am recording them...In a novel. I see it as potential Pulitzer stuff. And when I have a complete body of work, the Nobel in Literature. I know. Some people will think that's pretty lofty goals, but I was told that God likes it when we dream big because he likes to achieve big. And since he provided me with a big brother named Jesus, and since those places in the sand where there was only one set of footprints was/is when he carries me, I guess it's OK to dream big.

My mother had Alzheimer's for, well, she was diagnosed in March 2001. Quite a year toward the end of 2001, wasn't it? Well, Mom shared a lot of things with me. As her memory became more impaired she might say, "I can't remember anything." I would answer, "That's OK, Mom. I will remember for both of us." She would smile and say, "OK." One day she said to me, "I am afraid to talk." We were in her room at the nursing facility. (I will never call them homes again.) "Why?" I asked. "I think I'm not making sense. Sometimes I can't think of the right thing to say, the right word. I am afraid I look foolish." "Don't you give that a thought, Mom," I comforted her. "We all love you. We understand. It's OK. I don't want you to ever stop talking to me. Do you hear me?" "Yes." Relief washed over her.

I remember when she said to me with tears in her eyes, "I think we are too close." It was just a few years into the Alzheimer's journey. "What do you mean?" I asked. "Well, when something happens to me you are going to hurt really bad." "Why don't you let me worry about that?" I suggested. "Mom, I want all the memories you can give me. They will get me through the times when I don't have you any longer." "Are you sure?" she asked. "Yes."

The lives of women have changed so much over the centuries...since the beginning of time! Women have been demonized, been designated second class citizens, not intelligent enough or too emotionally fragile to sit on a jury or vote in an election. Often they have been nameless. Never in history or social studies classes did I ever hear the story about Deborah Franklin, wife of statesman Benjamin Franklin. Never in literature classes did we read On the Vindication of the Rights of Women by Mary Wollstonecraft, published 1792. I don't recall a time when we read poetry by Anne Bradstreet or Phyllis Wheatley. The stories of women were not worthy of being recorded.

Early in the summer 2011 I had lunch with my friend and former English professor. I talked...no, I complained about my situation and asked, "How do you break promises to God?" I thought Patti was angry with me. Later I apologized for making her angry. She replied, "I wasn't angry with you. I am upset about the deep hold of patriarchy over you."

Well, that was quite a statement!

One of my sisters-in-law recently asked me, "Are you sure you aren't Catholic?" I have a strong command of Guilt, but no, I'm not Catholic.

Patriarchy may have very good purposes. But it also has done a lot of damage, preventing many women achieving their dreams and goals because of gender: they are "female." Surely everyone understands that intelligence is NOT biological! Why do some men have so much difficulty understanding that intelligent wives are wonderful assets to the family. Why are they so intimidated by intelligent women? And where on earth would a 40-year-old man get the idea in his head that it was OK to correct a 58-year-old woman?

I am not a feminist. But maybe I bend toward egalitarianism. It takes both partners in a relationship to make a relationship work. When times are hard, those two partners have to work together if they stand any chance at all of getting through the hard times and come out on the other, sunny, side together. Not so unlike those early hunter-gatherers who traveled in small bands, following the food, and everyone working together just to insure the survival of human beings. Respect doesn't discern gender. Respect is something everyone deserves if they are willing to work to earn it.

Maybe next time I will talk about Respect.

(c) 2011 Cathy Thomas Brownfield ~ All Rights Reserved.

Passing the Torch

2011-10-12T06:55:00.000-07:00

The Hummingbird is gone from us now. Her passing was sudden and unexpected..."failed to thrive." She just wasn't strong enough to recover. And I can't say that I am sorry to see her suffering end. But I do miss her. We all do. This week also saw the demise of her last sibling, the third death of siblings since February 27. Uncle Ed (Ira) passed away Feb. 27, Mom on Aug. 23, and Uncle Dale on Oct. 8. I just hope that's the end for a while. I steeled myself to go into the funeral home last night. Lucille was falling apart the moment she walked in the door. She's one of the Spruce Street Gang. So many losses in that neighborhood in just the past 2-1/2 years, and her own husband is among that number. I shook away my own grief and reached out to comfort Uncle Dale's family.

I do that a lot, put my own feelings aside. I've come to the conclusion that's not a good idea. When you don't allow yourself to feel your feelings, you become numb and lose contact with the person you are inside. I'm trying to change that. At my age, shouldn't I know who I am and why I am, and shouldn't the why I am be more than just taking care of everyone around me? Shouldn't there be something more?

So, the blog that I began to document my mother's journey through Alzheimer's will take a new turn. I will write more about...life. Family. Me. Not that I'm selfish. But maybe I'm too selfless. That's the opposite end of the extremes. I want to be more middle of the road. ;)

Will I pick up more followers? I don't know. I have a grand total of 2. (Bless you both for taking the time and interest.)

(c) 2011 Cathy Thomas Brownfield ~ All rights reserved.

Hummingbird has departed

2011-09-04T09:07:00.000-07:00

I don't want to mourn the death of my mother. I want to celebrate the life of the woman who gave the gift of life to two sons and a daughter.

When Mom received her Alzheimer's diagnosis in March 2001 she called me in tears to tell me the doctor wanted to speak with me about it. I offered to go to her house immediately, but she said no. She already was at work on her strategy to battle with Alzheimer's. She didn't want to be brain dead and later on, she often said her brain was dead, but it wasn't. She struggled very diligently to beat Alzheimer's at its own game.

I scheduled an appointment and went to see Dr. G. What I didn't know that day is that his mother-in-law had just been diagnosed with Alzheimer's also. Had I known that, I might have understood why he exploded, "Why is everyone so upset about this? This is something that happens to all of us sooner or later, unless we're one of the lucky ones that drops dead on a golf course."

We were upset because this was our mother, the woman WHO GAVE US THE GIFT OF LIFE!!! We expected a heart attack or a traffic crash. Never had any of us ever considered that Mom would develop Alzheimer's Disease. She was a creative mind! She mastered carpentry...built her own kitchen cabinets in 1968 when I was in high school...changed doorways and eventually took out the wall between the kitchen and dining room, opened up the stairway to upstairs which had been closed in when we moved into that two-bedroom house on West Spruce Street when I was 4 years old. She did the electrical wiring, the plumbing, the roof repair. (Sorry, Dad, just the facts. You always said, "I call 'em as I see 'em. I call a spade a spade." Well, I guess I'm my father's daughter at this moment.)

This woman went to the hospital with me and my husband for every birth...four daughters. She had to follow the ambulance from Salem Community Hospital to Akron City Hospital when I was ready to deliver the twins, one natural, the other c-section. The doctor wanted us to be near Akron Children's Hospital in case there were problems. Mom always reassured me. She had a steady hand. "Don't worry until I do, then it's too late," she'd say, when I knew darned well she was worried. She made tomato soup from a single can of tomato paste because that was all she had in the house. And her children raved, "That's the best tomato soup I ever had!" She was the best kind of mom. She raised us with love, acceptance and discipline.

On my wedding day we had tears in our eyes when we looked at each other. I was 19. (And I'm fond of saying that teens are brain dead until they begin to show signs of life again when they are about 22.) "Are you sure you know what you're doing?" she asked. "Yes," I answered.

How could I be anything but at her side when she began her Alzheimer's journey?

When Mom wasn't building something in her house or sewing something on her sewing machine, she was painting with oils. She studied at Kent State University with Dr. Elmer Day. He was amazed at her rapid growth as an artist and told her which paintings to put away, which to sell. But Dad didn't want her to paint. So she stopped. (He denied this, but I'm pretty sure Mom was right about that.) When she gave up painting she displayed her creative skills with quilting. I insisted she make a quilt for me. I have three. When quilting became too difficult, she began to crochet tablecloths and afghans. Not simple patterns. Difficult, advanced patterns. If she had nothing else to do she grabbed a shorthand textbook or a math textbook and worked with those for hours. Every morning, she got up, dressed, poured a cup of coffee and sat down on the sofa with the newspaper to skim through it...obituaries, police news, court news, crypt-o-quote. She copied the crypt-o-quote into her steno pad and worked on it until it was finished. She kept her mind active.

Many times Dad and I talked about what would happen to her when he was gone. He felt it was his responsibility to be her primary caregiver and he did much better than we ever thought he would. When he was hospitalized I stayed with Mom. I remember the night she was home alone. Dad was in the hospital and she called me at midnight to tell me that Dad had gone off and not come home and she was worried because it was so late. I gently reminded her that he was in the hospital. I asked if I should come stay with her. She said, no, she would write herself a note and leave it on the table so she'd find it in the morning. When we hung up, I walked the four blocks to her house (I didn't have a car at the time) and let myself in. She didn't know I was there, but I slept on the sofa that night so she wouldn't be alone when she woke in the morning.

At Dad's last hospital admission, I went to stay with her again. A week later he was gone. I lived with her for four months. I didn't want to put her in a nursing facility. (They are not homes. And they never will be. They are places where people go to wait to die unless they are fortunate enough to get better and go home, or drop dead on the golf course.) I knew my mother. I was trying to keep her in her home where she wanted to stay. My husband didn't want to move to Mom's. Mom didn't want to move to our house. And I was between The Rock and The Hard Place. But as the Alzheimer's progressed, like most patients with AD, she became comfortable with my presence and began to be angry, belligerent.

One morning she came downstairs, happy as can be. She got her cup of coffee, went to the living room, and after a little while said, "We get along so well. Our living together is working well." I agreed. My husband came in and sat down in Dad's recliner. My mother got up, walked through the dining room where I was working on the computer, and went into the bathroom, closing the door behind her. The same woman did NOT come out of that bathroom. The door opened and released an angry stranger ranting and raving at me. I didn't know whether to sit still and wait until she was finished ranting at my back or whether I should stand up and look at her. I stood up, and slowly turned. I was a bit taller, so she had to look up at me. She began to back down and before she walked away she said, "I want you to go home. I don't want you here." "OK, Mom," I said. "I will take care of that for you.

We moved Mom to a nursing facility (not home) in mid-July. She hated being there at first. Later she said things like, "I don't guess I'll ever go home. I will probably die here."

The long and short of it is that 25 months after she moved to the facility (not home), I got a phone call. "I realize you spent the afternoon with your mother, but she's restless. Her blood pressure is 65/55, her oxygen level is 87 percent. Will you come sit with her a while?" Of course! I contacted my brothers, my children, and we all gathered around her. She had been telling my middle daughter that she wanted to go "home" but she wouldn't tell me. Christie said, "You need to tell Mom, Honey. It's OK." But she wouldn't tell me. (My children call my mother Honey. It was a name Mom loved because she didn't have to share it with anyone else...like Grandma, Gran, Granny. It was HER name. And it fit her so well.) Mom spoke my name to Christie. Christie told her I would be OK. That Christie would see to it, promised she'd always make sure I was OK. "If you're worried about Mom, you don't need to be. I promise. I will take care of her, Honey."

"Mom?" I said. "Are you planning a trip without me, Mom?" I turned serious. "Mom, if leaving us is the best thing for you, it's OK. We don't want you to go. We will miss you like crazy! But it'll be OK. Don't worry about us. It'll be OK. Remember when you told Levi to go to Grandma and stay with her until you get there? He'll be right there waiting for you, Mom. Levi will be right there waiting. You'll get to see Dad. You'll get to see YOUR dad and your mother. It's OK, Mom. It's OK."

We tried to soothe her...held her hands...rubbed her arms. But she pushed us away. I decided she was working at clipping the strings that held her to this world and she didn't want our interference. Toward 3:15 a.m. my daughters went home because their husbands had to go to work in a couple of hours and their children needed them to be at home. Toward 3:30 a.m. I sat beside her, fighting to stay awake. I dozed off for just a moment. As if she'd been watching for that moment she snatched it. My brother Richard tapped me. "She's gone." I looked. The news story on TV was the same one. I couldn't have dozed off for more than a moment. And she was gone.

Alzheimer's is a terrible disease, not so much for the person who has it as it is for the family that loves that person. For months I asked God for two things: Please, be kind to my mother. She has always been loyal and true. And, please, don't ever let the Alzheimer's get so bad that she forgets her family, the people who love her.

Goldie Louise Baker Thomas passed from this world at 3:40 a.m. Aug. 23, 2011. (The death certificate logs a later time, but we were there. We know.) She loved deep and she loved hard. And she was so easy to love.

I miss you, Mom. So much.

Love you forever,
Cathy

Copyright - Cathy Thomas Brownfield ~ All Rights Reserved. May not be used without permission.
.

Another jump?

2011-03-17T17:41:00.000-07:00

I found Mom in the dining room. She was supposed to be eating lunch. Her spoon was in her hand, resting against the plate, her eyes were closed. My sister-in-law, there for rehabilitation, looked at me. “She’s sleeping.”

Not normal for my mother.

I tried to get her to wake up but she couldn’t. Her nurse lingered nearby, his cheeks flaming. He told me Mom complained that her feet hurt so he gave her a stronger pain medication. He said she had taken it before without problems.

My brothers and I were in agreement: She must have been overdosed on the medication.

There wasn’t much point in staying and watching her sleep. Later in the evening I called to see how she was, was she still sleeping? The nurse had to wake her for her evening meds. He promised to watch over her and call me if they needed me.

Watching her sleep, I was reminded of “Florence.” First let me say, since last July Mom has had four roommates, three of whom died. “Florence” was alert and aware when she moved into Mom’s room. She enjoyed Mom’s HD-TV and Richard mentioned he would program a remote for Florence so they both would have remote control convenience. When I visited again, Florence didn’t do anything but sleep. I remember thinking she seemed to be slipping away and would be gone soon. And it was so.

I worried that Mom, somewhere deep inside her gray matter that the Alzheimer’s hadn’t yet ravaged, had resolved that it was time to begin to clip the ties that bind.

“Mom?”

Her eyes fluttered open. “Yeah?”

“I’m going home to fix supper.”

“OK."

“Don’t leave me, OK?”

“I won’t.”

I remember when my grandmother was sick and Mom said she wasn’t ready to be the family matriarch. I knew my time would come. But I’m not ready. When I walk into her line of sight, her eyes light up with recognition.

The next day I went to check on her. She was bright-eyed and bushy-tailed. She’d had her hair done and went on the bus with other residents for a ride in the country. She was Mom and I was satisfied that she was OK.

“Hi! Do you know who I am?” I asked.

“My sister?” she answered.

“Nope. Try again.”

“My mother?”

“Nope. Try again.”

“I don’t know.”

“Have you seen Cathy lately? What’s she been up to? Do you know?”

“You’re her! You are Cathy!” She sounds happy to recognize me.

“Yep. That’s absolutely right!” I’ll take it while I can get it. I know the day is coming when she won’t have any recognition of me at all. We are so close I am pretty sure that I will be the last person she can’t remember.

I can’t make up my mind if I am being selfish in holding her here in this world. Would it be better, kinder, for her if she could just go to sleep and not wake up? I just know that I need her to be there even if our roles are reversed. I need to hold onto her. I don’t want to let go.

ALL RIGHTS RESERVED FOR THIS ALZHEIMER'S BLOG. For permission of use contact me, the author.

Pebbles Rippling

2011-03-08T07:36:00.000-08:00

We are like pebbles dropped into a pond, one speck in the universe so big we can’t even imagine. So often we convince ourselves that we can’t make a difference for anyone or anything. I am not so sure that is so.

My daughter and her boyfriend were visiting from North Carolina. They brought two puppies with them that we took with us to the nursing home to visit my mother. Mom has always loved dogs and she was really enjoying the puppies, Dakota and Danika. Their mother is a mix (Australian shepherd, collie, lab) and the father is a full-blooded Alaskan Husky. Dorothy, another resident with Alzheimer’s, looked as if she’d like to touch them. I asked if she was a dog person and wanted to hold one of them. Yes. So, I supervised the visitation on Dorothy’s lap. Then I traded puppies so she could get to know the second one, too. A pebble dropped into a pond, rippling.

“Thanks for coming to visit,” she said to each of them.

The aides were bringing an elderly man to the common area. I know he’s afraid of dogs because I’ve taken my collie with me a few times. Ashley and Bobby brought the puppies back to where Mom and I were sitting. When the man was settled in his chair, they took the puppies to him and let him take his time to touch them. A big, old grin came across his face all the way to his eyes and into his soul. He was so excited about those puppies! When they came back across the room he chanted with a smile, “Beautiful dogs, beautiful dogs.” I think he wanted to hold them again. A pebble dropped into a pond, rippling.

He began to sing with a joyful voice. The very first song was Jesus Loves Me. I don’t remember the others, but he sang, one after the other and it lifted MY spirits. I felt like I was witnessing a small miracle. And we know what Jesus said about faith and the mustard seed.

Betty is another resident with Alzheimer’s. She learned to play piano when she was a child, but I hadn’t heard her play in a long while. She got up and disappeared. But when I heard the piano, I knew where she had gone. I excused myself and went after her. She was at the piano, playing. I stood in the doorway listening. She noticed me, which surprised me because my mother can lose me sitting beside her. I went to her.

“I love to listen to you play the piano,” I said.

“Really?” she asked. “I think I’m making a lot of mistakes.”

“We all make mistakes,” I said, “but when I walk through the door and I hear you playing it makes me feel so good!”

“I’m glad you get pleasure from it,” she smiled. “You know, I play for God. That’s why I play. Do you have any requests?”

“Do you know ‘In the Garden’?”

She began to play without a thought. When she finished, “Do you know ‘Amazing Grace’?” She went right to it again. “Do you play polkas?” It wasn’t a specific song request so she was confused. She had the pile of meal menus right there and sorted through the “music sheets.” I didn’t mention that.

“Keep playing, OK?” I asked.

She promised she would.

Pebbles dropped into a pond, rippling.

I returned to the kids and my mom.

My sister-in-law is there as a resident. She hasn’t been well in some time. We took the puppies to her room because she loves dogs, too. We didn’t stay long because she is so ill. Still I tried to encourage her, “Feel better soon.”

Pebbles dropped into a pond, rippling.

Guilt-free today

2011-02-23T07:21:00.000-08:00

I remember when I used to be critical of people who put their elderly parents in nursing homes so they didn’t have to take care of them. In my idealistic mind I could take care of husband, children and home in a single bound, and even take on the wrenches that got thrown into the works on a daily basis. And never get my Super Mom cape dirty. I was adamant that neither my husband’s mother nor my mother would ever spend a day in a nursing home. What did I know?

His mother spent the last 15 months or so of her life in a nursing home. My husband didn’t tell me why. He’s not much of a communicator. All he would say was that “It’s not a good idea.” I was hurt and jumped to the conclusion that I wasn’t considered good enough to take care of a woman who was still sharp-minded and able to take care of herself. Seven years later I learned there were health issues. It had nothing at all to do with me. Why didn’t my husband tell me?

Now my mother has lived in a nursing home for 19 months. She is more docile now. I recall many difficult visits when she got angry because we wouldn’t bring her home from that place. Now she says, “If you have to be someplace like this, this is the place to be. They take good care of us here.”

The turnover in staff is high. That concerns me. When a family develops a relationship with the caregivers who look after their loved ones, and suddenly the place is filled with a lot of new faces, relationship building begins all over again. There is no security in knowing that the caregivers know Mom and care about her. And how many times do I have to ask, “Will someone help her with her teeth? They are a mess. She can’t remember to do it on her own and she would be so embarrassed if she realized what condition her teeth are in.” I wonder, if I took a mirror in to mount on the wall, would she notice then? Probably not. She can lose me sitting right beside her.

I used to feel guilty about Mom being there. Now I feel guilty because I can’t get there every day to visit with her for half an hour or so, to play Uno or Yahtzee with her, or draw with her, or just walk with her. It’s important that she have stimulation to keep the brain function she has. And it’s been said by staff members themselves that there is little of that for the Alzheimer’s residents. No wonder I was asked to come and volunteer there. But there are all of the other family obligations I have. And there isn’t a place closer to home that I know of so I can visit more often.

So, we just do the best we can from day to day. And now I understand why people have placed their elderly or special needs loved ones in a facility that can better see to the physical needs, even if they don’t see to the intellectual and emotional needs. Family can still see to those if they are willing.

No guilt today. But I do need to go and visit with my mom. I’ll take milkshakes and we’ll play Yahtzee, and I will remember for both of us. For today, my other priorities will have to wait.

Tears

2011-02-16T22:08:00.000-08:00

I’m…frustrated, reminded again of what I have lost as Mom journeys through the later stages of Alzheimer’s.

It used to be when something happened in the world that piqued my interest, Mom and I would talk, share our opinions, debate things like the nature/nurture debate and, well, just about anything. She was wise and knowledgeable, had a lot of common sense. And she always helped me to get things into perspective. I tried to do the same kinds of discussions with my husband, but he’s just not into that. I might as well talk to that wall.

So, someone posted a joke at one of my online writers groups. It set something off inside of me. Even as I was going to hit the enter key to post it I thought maybe I shouldn’t. But it seemed to be something that begged, perhaps needed to be said. Eh, well. You win some and you lose some.

What does that have to do with Alzheimer’s?

Well, the person with Alzheimer’s isn’t the only one who suffers loss. Family members and close friends suffer losses, too. When they forget, we remember. And where do we go to talk to someone who will be patient, understanding and non-judgmental? If our spouses don’t understand or take an interest in us, what are we supposed to do? How do we…put everything into perspective when we don’t have a sounding board…when we feel so alone?

Sitting here crying isn’t going to help anyone. It isn’t going to fix anything. It isn’t going to make the Alzheimer’s go away. But maybe the tears will be a cleansing thing so I will wake up in the morning ready for the next round.

It’s supposed to be cloudy and 60. Surely there is an ice cream place open year round so I can break Mom out of the nursing home for a while and get her a treat. She loves ice cream. And she says she loves being with me. I’m feeling the same love for her even if we talk about the same thing over and over 300 times.

Embracing It

2011-02-09T21:22:00.000-08:00

I visited Mom today. Next month will be 10 years since her diagnosis. In 2005 her physician said he’d read about Namenda and wanted to add it to Mom’s daily pharmaceutical cocktail. Up until then, he hadn’t prescribed any of the other four drugs for Alzheimer’s. When I walk into the nursing home, Mom’s face lights up when she sees me. She doesn’t remember anything we talk about, but when we’re talking she understands what we are discussing. Somewhere in the discussion we conclude:

I say to her, “Please don’t forget who I am.”

She says, “I will never forget you.”

“Promise?”

“Yes,” she always answers.

And when I talk to God I pray, “Please, be kind to my mother.”

Given that the average Alzheimer’s patient lives eight years with the disease and we are now at the 10-year mark and she still recognizes all of us, I’m confident that God’s hand protects my mother, is answering my prayers. And I am encouraged that God will bring another miracle to mankind through Mom.

So, my blog about Alzheimer’s is taking a kind of turn. I want to be on the cutting edge of Alzheimer’s technology, research, to understand it and help others understand it as we face the global epidemic of Alzheimer’s Disease.

“While there is no cure for Alzheimer’s Disease,” advises the Alzheimer’s Association, “there are five prescription drugs approved by the U.S. Food and Drug Administration (FDA) to treat it’s symptoms.”

• Donepezil (Aricept) ~ for treatment of all stages of Alzheimer’s.

• Galantamine (Razadyne) ~ for mild to moderate stages.

• Rivastigmine (Exelon) ~ for mild to moderate stages

• Tacrine (Cognex) ~ rarely prescribed because of possible side effects, including liver damage.

• Memantine (Namenda) ~ for moderate to severe Alzheimer’s Disease.

Aricept, Razadyne, Exelon and Cognex are “cholinestrerase inhibitors,” and are used to treat symptoms related to memory, thinking, language, judgment and other thought processes. These drugs increase the levels of acetylcholine. This chemical helps deliver messages in the brain.

“But Alzheimer’s Disease damages or destroys the cells that produce and use acetylcholine, thereby reducing the amount available to carry messages. A cholinesterase inhibitor slows the breakdown of acetylcholine by blocking the activity of acetylcholinesterase by blocking the activity of acetylcholinesterase. By maintaining acetylcholine levels, the drug may help compensate for the loss of functioning brain cells.”

The inhibitors may slow progression of the disease for six months to a year. Combining drugs would like result in greater frequency of side effects (nausea, vomiting, loss of appetite, increased frequency of bowel movements.)

Namenda is a “receptor antagonist,” the first drug of its kind. It is used to “improve memory, attention, reason, language and the ability to perform simple tasks. “ Namenda regulates glutamate which is essential in learning and memory. Glutamate is involved in information processing, storage and retrieval.” Too much glutamate disrupts and kills brain cells.

Statistically, Namenda (receptor antagonist) significantly improves mental function and the ability to perform daily activities, according to several studies. Reportedly, it doesn’t help those with the lowest cognitive function. (For more detailed information, please visit the Alzheimer’s Association website at www.alz.org.

My goal is to find a way to check Mom out of the nursing home permanently and bring her home to live with me. She deserves to spend the rest of her life piddling around in a garden in the backyard, setting up her easel to paint or sit at the organ playing the music she so enjoyed before Alzheimer’s stole her memories.

No more driving

2011-02-02T22:45:00.000-08:00

Mom’s doctor suspected Alzheimer’s Disease in early 2001. I have to say I was concerned when Mom said she didn’t recognize where she was, but all the other cars were turning right out of the parking lot so she did, too. When she got to the traffic light she began to recognize her surroundings.

When she went in the car by herself, Dad worried the whole time she was gone. Was she OK? Was she lost? Could she find her way home?

The doctor ran every test he could think of to eliminate the conditions that could have similar symptoms until he ruled everything out.

“The only way we can know for sure,” he said, “is to do an autopsy on the brain. Obviously we can’t do that while she is living.”

The family was divided over the issue. Mom was upset to know her brain was dying. Dad didn’t understand the disease. My brothers didn’t want to admit this was Mom’s condition. And I was trying to embrace the diagnosis so I could be a strong ally against it. Mom needed someone outside of herself to be on top of this. Inside I was screaming, “Not my mom! This won’t claim my mom!!!”

One of my brothers was particularly stubborn about accepting Mom’s diagnosis until Dad died. He stayed with Mom a couple of days a week so I could go to my home and reassure my husband he wasn’t being abandoned. One day this brother called our youngest sibling and said someone needed to come immediately because Mom had told him to “get the hell out of her house.” He finally came on board because Mom had never talked like that to any of us.

Dad didn’t know how to handle Mom’s progressive decline. He told me to take her car to my house so she wouldn’t drive it, but when she got difficult he made me take it back. My brother disabled it so it wouldn’t start. At a doctor’s appointment the doctor asked, “How are things going? What do you think?” Dad answered, “I think she’s a little better.”

“You need to understand,” the doctor said, “she’s not going to get better. Her condition is going to progressively get worse. This isn’t going to go away. It’s going to worsen.”

Dad nearly cried.

When Mom insisted she could drive, I finally said, “We will go to the doctor and talk to him about it. If he say it’s OK for you to drive, fine, you can drive.” We all agreed with that. And we scheduled an appointment.

The doctor gave her a list of things to remember. He had her repeat them as he said them. Then he asked another question immediately followed by a request to name that list of five items. She couldn’t remember even one. She argued with him, though, that she could still drive. He would not budge. She was not happy that she was no longer allowed to drive.

These days she no longer argues about driving. She will say, “I want to go to my own home, but I don’t suppose that’s ever going to happen. I’m going to die here in this nursing home.” And I still offer words of hope, “Mom, if it wasn’t for the Alzheimer’s you could be in your own home. If they can find a cure, a medicine that will give you back your memory, you can go home with me, immediately. You can live with me.” “I’d like that,” she says.

I am trying to find the congressman or senator who is pushing the FDA (Food and Drug Administration) to approve a drug that, in trials, is bringing people’s memories back. He has three family members with severe Alzheimer’s. The FDA reportedly said it has to insure quality of life, to which this man has asked what kind of quality of life is it for someone who can’t remember anything? If you saw this news report (I did not, but was told about sometime after the airing) or you know who this man is, please leave a comment and let me know.

Happy Birthday!

2011-01-21T20:42:00.000-08:00

Today is my mother's 80th birthday. I wanted to take her out for ice cream to celebrate, but the temperature was so close to frigid I just couldn't bring myself to take her out. So, my husband and I took flowers to her.

"Do you feel any different at 80 than you did at 79?" I asked.

"I can't believe I'm 80 years old!" she said. And I immediately thought about her mother's 80th birthday.

Grandma never told anyone her age. And when she had to go to the emergency room for treatment the doctor asked her how old she was. "Don't you know you aren't supposed to ask a woman her age?" She refused to tell him how old she was. But on her 80th birthday--which party was at my home--she kept saying, "I can't believe I'm 80 years old!"

I reminded Mom of that again. She doesn't remember. When I was there a couple of days ago she couldn't remember that Dad has been gone for nearly two years. "Did you see your dad go over there?" She pointed toward the other side of the room.

"No. Mom, Dad is gone. He will be dead two years in March."

Today I looked into her blue eyes. She still knows us, and I can't explain what I saw there. I looked at the table settings and asked who she sits with for supper. She asked, "Don't you remember Fred?" And I felt silly for asking the question I did. Nobody else was brought to her table. I wondered why as we got ready to leave.

She isn't argumentative as she used to be. Someone mentioned it was her birthday and other residents called Happy Birthday to her. And Sunday, we will bring her to my house for a birthday party with family and she will receive more greetings and enjoy food unlike what she eats at the nursing home. And maybe for a little while we will forget that things have changed so drastically. I understand she's top winner at Uno even though she tells them she has never played the game before.

Happy Birthday, Mom!

Reasons

2011-01-13T15:21:00.000-08:00

It’s a cold January day. I haven’t gone to see Mom for a few days. I’ve had that nasty cold that’s going around and I didn’t want to give it to her or anyone else at the nursing home.

When I sit down to post here, I am not sure what to write. Things are different. Our visits, Mom’s and mine, are never for more than an hour or two. She can’t follow conversation very well, and forgets we’ve spoken of things just a moment before so we speak the same things over and over and I try to answer differently each time, though I don’t know why because she won’t remember any of the variety of answers. And when I leave, she will not remember that I have been there. She will tell the staff that her daughter hasn’t been there to see her in a long time. I began to look for things to take with me for us to do together. Like jigsaw puzzles. The 750-piece puzzles are too much for her. The 300-piece puzzles also are difficult for her, but she does manage to find homes for some of the pieces. I think we’ll try a smaller number of pieces.

She doesn’t crochet as much as she used to. I asked her why.

“I can’t find my hook.”

I found it in a bag of yarn, and gave it to her. She was delighted! But forgot about it quickly.

I met with the staff last week for her quarterly care meeting. She’s gained 40 pounds since she went there. But much of the weight gain probably is because she was unable to walk and spent most of her time in a wheelchair. They noted that she doesn’t crochet as she used to. I explained she can lose me sitting beside her. She needs help to “see” the hook and yarn so she will do it. Just like she needs someone to guide her to the toothbrush and take care of her teeth. At Christmas dinner she had to go to the bathroom. I helped her to the sink. She was going to wash her hands with toothpaste.

Christmas dinner went so well that, after New Year’s, my daughters Christie and Beth and Beth’s daughter, Aubriana, and I, took Mom, aka Honey, to lunch. That went well, too. I can manage the walker, but the wheelchair was too big to fit into my car and I couldn’t manage it at all because of its size. They told me the wheelchair has been taken away because she doesn’t need it any more. Wonderful news! Now I can take her to lunch or bring her to my house to spend the day and visit here with family and eat supper with us before I take her back to her existence at the nursing home. I’m not sure I can call it ‘life’ there because I’m not convinced that anyone spends much time with her there. And I have asked that they do little things with her every day to help keep her brain functioning for as long as we can.

I had a terrible battle with guilt about putting Mom in a nursing home. I was told it would be better so I wouldn’t have to take care of her around the clock. Caregivers often are NOT taken care of. That I would be able to get my rest, too, and our visits would be better.

I often hear people say, “Things happen for a reason.” I believe it’s true.
One day Mom said to me, “I wonder if we’re too close.” She was sincerely concerned and troubled by that thought.

“What do you mean?”

“If something happens to me, it’s going to hurt you very deeply because we are so close.”

“Why don’t you let me worry about that?” I suggested. “We’ll make memories that will get me through the times I will have to face later. I’ll take the memories.”

That was a long-ago conversation. Years ago. Of course, I thought we were referring to her death…the death of the body. And sometimes now I think death of her body would be better, easier, than the slow progression of the theft of her mind by Alzheimer’s, that subtle thief that steals her memories from her and mockingly steals our mother and grandmother from us in its own sweet time.

When I walk in the door, her eyes light up with recognition and her smile spreads all over her, all over me, all over the room like warm sunshine.

“You know me?”

“You’re my daughter, Cathy. I will never forget you.”

Why does that make my throat close and send tears burning to my eyes. I so hope she is right.

Having her live separate from me is perhaps a tool to help me to begin to sever the earthly ties that bind us so when God does take her home I will be able to cope with losing Mom. And perhaps last year’s gout episode that kept her in a wheelchair for most of 2010 was God’s way of preventing me bring her home too much when I need to be preparing for the life changes ahead. And to not use Mom as a way to ignore the decisions in my own life that need attention. And to take time to breathe and just be, to smell the roses. To enjoy my grown children and their children, and to pursue my own dreams that have always been pushed to the back burner and off of the stove.

“Do you remember me?”

“You are my daughter, Cathy. I will never forget you.”

Time...takes care of all things

2010-12-29T19:28:00.001-08:00

Time takes care of all things. I remember Mom used to tell me that when I was upset or my heart was broken. She has been living in a nursing home for a year and a half. She doesn't remember when I've been there to visit. She can lose me when I'm sitting right beside her. But her eyes light up and a smile touches all of her features. "There's my daughter, Cathy," she will say. "I hope you never forget me," I answer. "I will never forget you," she says.

She doesn't seem to get angry any more, or call me to ask me to come and get her out of there. The staffers no longer call me to say Mom's a little agitated and will I talk to her for a few minutes and see if it calms her. I still write notes to her in her notebook to read when I'm gone. Last time the paper in the notebook was stained as if she had spilled a cup of coffee over it. A piece of a page was torn from it as if she might have needed to write something down, but has now forgotten all about whatever she had to write down...and, I think, even the notebook.

But our visits are pleasant. We discuss the same things over and over again. I took a couple jigsaw puzzles for us to put together. I thought it would help keep her brain active. I thought it would be something different to talk about. And I thought if the puzzle wasn't complete before I left, staffers and visitors and even her roommate would utilize it to talk with her. No. I finished it. Mostly in silence. There's so little for us to talk about because she remembers so little.

I helped her escape on Thanksgiving for dinner with some of the family at my #1 daughter's house. I helped her escape on Christmas for dinner with all of us at my house. I said to my daughters, "We haven't had a girls night in a while. It's time." Mom asked, "Can I go to girls' night, too?" "Of course!" I answered. As soon as the discussion was done, she forgot about it. And when I took her back to the nursing home, I carried her gifts in for her and set them on the bed. "Whose stuff is that?" she asked. "Yours," I answered and asked, "Do you want to open them again?" So we opened them again and I put her new clothes on hangers after I put her name on them. In a nursing home you have to put your name on your belongings and you shouldn't have anything that can't be washed in hot water. I think they wash everything in hot water.

Then I hugged her and told her how much I love her. And she hugged me back, kissed me on the cheek and told me how much she loves me.

I miss my mom. I miss her so much. We can't have those deep discussions any more. Or go shopping and to lunch where we laughed and plotted and planned things. We can't quilt together any more or make dolls for my girls or teddy bears for each other. We can't go on trips like Mackinaw Island, Michigan. We can't walk up the alley and back on a gentle summer afternoon.

Time...It passes so quickly!

Waiting

2010-08-17T18:18:00.000-07:00

The nursing home seems to be a place where one goes to wait to die. Everything you own is taken from you. You can't live alone so you can't have your house. You might get lost so you can't have your car. People even exchange your keys for keys that won't work. You can't keep your valuable jewelry because you might flush it down the toilet for safe-keeping. You can't cook because you might forget you left a pan on the stove with the burner on and could start a fire, burn down the house. And your kids have lives to live. They can't live those lives if you are a burden for them.

Mom calmed considerably when she went to live at the nursing home. There have been some Sundowners episodes, taken care of with a dose of Atavan. Her roommate died. They were neighbors for decades, roommates for a year. Mom didn't remember. Any of it. And wonders who the other woman is who sleeps in her room.

Dad has been gone nearly a year and a half. Mom complains to the aides, "When I get my hands on that man I'm going to kill him for dumping me here."

But when I am there she says, "Bill is dead, isn't he?" Yes. "What I really don't understand, though, is why my mother doesn't come to see me." She's gone, Mom. She died in 1983. "Oh. I didn't remember that. I just thought if that's the way she wants to be I won't go to see her, either."

And to her roommate, "I haven't seen my daughter in a long time." That's not true, Paula says. She was here to see you and left a note in your notebook for you. So Mom gets the notebook and begins to read.

My brother, Bill, insisted on a notebook so visitors could sign and date it. That way Mom would see that we'd been there to see her. Most of the notes are from me.

"I didn't know about the notebook," Richard said. I probably forgot to tell him. I don't have Alzheimer's, do I?

"I will probably die here," Mom says wistfully. She probably is right. The nursing home seems to be a place where one goes to wait to die.

Back on her feet

2010-02-19T19:31:00.000-08:00

December was a difficult month for Mom with several hospital visits. January found her bedridden with gout. It has been a long winter for her. She now has to work to get strength enough to be able to walk on her own again, 10 feet at a time. Last week she walked 25 feet, 40 feet. Today she walked 75 feet, moaning with pain with every step. But she did it. And was so exhausted when she landed in the recliner that she napped for the rest of my visit.

For some reason I can't explain, the staff seems to think I don't know much about Alzheimer's. Today the physical therapist said something about the Alzheimer's.

"I know. I stayed with her for 127 days before we brought her here. I've been involved ever since she got her diagnosis. " (That was early March 2001.) "I've shared as much of her journey with her as I can, from the beginning."

The Alzheimer's is claiming Mom one day at a time. Her movements are much slower than they used to be, but she was crocheting something the other day that she hadn't crocheted in a while. It was perfect.

I think it's certain that Mom will never be able to go back home to live. In all of these months, since July, (and I can speak only for myself), I have come to terms with the situation. I don't feel guilty for moving her there any more. She would not be safe alone in her home. And with all of my other commitments, obligations and responsibilities, I don't have time or energy or expertise to provide her care 24/7. This way, when we visit, we enjoy each other's company because I'm not the bossy daughter. She always lights up when one, or more, of her children show up to visit her.

We are making memories, but Mom will never retain them.

(c) 2010 Cathy Thomas Brownfield

Spread too thin?

2010-01-19T07:51:00.000-08:00

I entered my mother's room. She was sleeping. At two o'clock on a Sunday afternoon. She rarely slept the afternoon, but it wasn't completely unheard of. I relaxed in her recliner to wait until she woke. An hour later she was still sleeping. So many health issues in so few weeks: three hospital visits resulting in two admissions during Christmas week. When she is admitted I stay with her around the clock, except during relief by my brothers or sister-in-law, so she won't become confused, upset and need to be sedated. When she sees me or hears my voice, she calms down. It happened every night. I asked the nurses to set the bed alarm at night because she wouldn't argue with them the way she argues with me. The main thing was keeping her calm and feeling secure.

We got through the holidays. And then she was bed fast. I met with the head nurse and physical therapist. Does the nursing home staff expect me to believe they "are doing their jobs" when I can observe the signs they are not? THEY are the ones who said the doctor talked to the nurses on the floor via the telephone to determine her condition and subsequent care, to decide if she should be transported to the hospital for the ER doctors to determine her condition, it appeared, so he wouldn't have to be troubled with earning the fees he was being paid. I am the one who said, "He's on thin ice with me. HE is the doctor and he will use his own eyes, not the nurses' eyes to take care of her or I'll replace him." (I can do this because I hold the health care power-of-attorney and I won't hesitate to do what I believe is in my mother's best interests.

To get a call about orders for a salve to heal the rash in Mom's abdominal fold was disturbing. If they are bathing and powdering her abdominal fold daily there probably isn't going to be a rash there. I don't expect perfection from them. And I'm trying very hard to be reasonable. However, this is my mother...the woman who sacrificed everything to make sure we all had what we NEEDED...the woman who worked hard every day of her life for the good of the whole, not the part.

It occurs to me that maybe I need to become a nursing home patient advocate when my mother is no longer in need of me...when she has crossed beyond the grave to the loved ones who are waiting to welcome her home. Yes, I believe this. It comforts me to know she will be whole again when she makes that journey. Yet, not having her where I am will sorely hurt.

I visited her Saturday. She was in bed, her feet up, now healing, her crochet work in her hands. I sat in her recliner, feet up, researching with my netbook for something I was writing. We didn't talk a lot. When we talk, we speak of the same things over and over again as if it was the first time every time. We were content just being together. I said so. She agreed.

The winter has been long and troublesome. I feel drained to almost empty. I am saddened to think I offended Nancy on Saturday. She and her husband were inside McDonald's. I was in my car in the drive-thru. I wasn't 100 percent sure it was her. I didn't wave. I didn't mean to snub her at all. I am so drained I feel like I'm on 10-second delay. Please, God, don't let it be Alzheimer's. My memory is fine. I just have the slows!

The pace is rising. I have more responsibilities and obligations. I began today to babysit my 3-year-old granddaughter while her mother attends college classes. I want to do this because education is extremely important, and my parents helped me with my children so I could pursue my dreams, too. I have to visit Mom frequently to make sure she's getting the right care, consistently. I have my publicity job for Family Recovery Center that requires time each week. My house needs a thorough cleaning but with the recent changes (two college students are living with us again) I'm not sure where to start. Work schedules, school schedules, my schedule and mealtimes are challenging...and for me to be worth anything I need seven or eight hours of sleep at night, uninterrupted.

Why do I feel the need to share all of this? Because I don't want anyone to think I'm a spoiled, selfish, self-centered, worthless slug! It seems, right now, like the only one who recognizes this is my mother, the woman with an Alzheimered mind. Oh, Hummingbird, please, please, please, don't fly away!

Yet, minute by minute you are.

(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Contact author for permission of use.

Speaking up

2010-01-14T06:04:00.000-08:00

There is a fine line between taking care of a loved one in a nursing home and taking care of a loved one in a nursing home. You read that right. You don't want to make the people who work at the nursing home angry so they will take it out on your loved one, but you want your loved one to be taken care of properly, even when they insist that everything was being done but you just couldn't see it until you raised the questions.

"I don't have to tell you the reputation that nursing homes have," I advised the group of staffers who gathered for the quarterly care meeting for my mother. "There is a stigma, and those questions are always in my mind. And I have to believe the reason that doctor who 'typically doesn't come in on a Tuesday evening' came in because of what I said: He uses the nurses as his eyes and prescribes care over the phone. If he wants to take care of my mother he will have to be his own eyes or he is done. God bless nurses, but they aren't doctors. That is his job!"

What I also said several days ago was this, "I can handle anything when I get the truth. I don't handle well at all being lied to. I'm not saying anyone has lied to me. I'm saying it better not happen."

I haven't used my trump cards yet: I have media connections and I know how to use them. I have no qualms at all about calling state in to investigate. I haven't been hiding the fact that I'm a writer. It just never came up. But I've said several times, in the past week, that I am a writer. They might be saying to themselves, "Oh, NOW I know where I've heard her name."

What I know for certain is that my mother literally marched through Hell for her family when she was raising us. She went without--I'm not talking about luxuries here--so the rest of us could have what we NEEDED. She endured a difficult marriage when it would have been much better for her if she would have left it. But as she told me once, "You can't help who you love," meaning that we fall in love and there's not much we can do about it. And when "you make your bed, you have to lie in it" comes to light. My mother--and I'm sure others feel the same about their mothers--deserves the best care we can provide for her.

My family has to be able to trust them to take good care of Mom in our absence, though they told me there is someone from the family there every day of the week, sometimes more than one person shows up on the same day. I'm glad they notice that because they will tend to her care because they never know when one of us is going to walk through that door. There is a reason why I don't let them know when I am going to visit.

Should family members speak up? If you don't develop a relationship with the staff who take care of your loved one what do you have? When you open your loved one's life to a huge "family" at a nursing facility, you have to open yourself to that family, as well. How can your loved one regard the nursing home as "Home" if you don't? Family isn't just what you're born into. It's the circle of human beings that you belong to.

One of my daughters had a "discussion" with a friend. Afterward, she felt like a heel because she had questioned whether this person was truly her friend. I told her, and I meant it, when you have disagreements with someone, the fixing of things--the making up after a disagreement--strengthens the friendship. That's not a bad thing. In fact, that's a doggone good thing! That's when the misunderstandings and misinterpretations are cleared up.

Should you speak up or keep your mouth shut so you don't cause trouble? In my humble opinion, speaking up is a good thing. It doesn't have to be a knock-down, drag-out. It just needs to be clear: I am aware of the stigma of nursing home facilities. I am aware of what is best for my loved one. I am not trying to offend anyone. I'm trying to be fair, and I'm trying to make sure that my loved one--in my case, my mother--is well taken care of because she deserves to be well taken care of and I'm trying to honor those things she made me promise her when she was diagnosed with Alzheimer's nine years ago.

"I know the day is going to come when you will have to put me in a nursing home. It's OK. You do what you have to do. I know I'm going to argue with you, but it's the right thing so you do it. And when I don't know you any more, stop coming to visit me because I will be gone."

Yes, we moved her to a nursing home. Yes, she has argued with us about it. Will I ever stop visiting her? Probably not. Even when she doesn't know me any more I will continue to go if I am able. Even if all I can do is sit in the chair beside her bed and watch her sleep. But I pray, "Please, Lord, be kind to my mother."

(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Contact author for permission of use.

Weak or lonely?

2010-01-05T05:50:00.000-08:00

I walked into the nursing home and stopped at the nurses' station to see how Mom is doing. The nurse lowered her voice and said, "She's so weak. I'm worried about her." Oh. I thought she was doing better since she was released from the hospital. I went into her room. She was sleeping. I took off my coat and set it aside, then went to her and gently touched her with a hug.

We talked. It's the same conversation over and over again for me, but each time it is fresh and new for her. I don't mind. At least she is talking to me. And she knows who I am. The longer we talk the more she perks up. There is a small photo album on top of the mini fridge we keep stocked with bottled water and green tea. I don't think she remembers it's there any more than she remembers the box of candy I gave her at Christmastime along with the other gifts we gave her. So I got down the photo album and we went through the pictures. She told me who was in them and I remembered for both of us the occasions for each photograph. She enjoyed that conversation so much. By the time I had to leave, she had perked up a lot. Yes, the gout still had control of her foot so she couldn't put weight on it, so she couldn't get out of bed. I could see, though, that she wasn't weak as the nurse thought. But the nurse doesn't know my mother the way I do, even if Mom has lived there for six months.

Yesterday I went to see her again. I stepped into her room but she wasn't in bed or the chair. I went to the nurses' station. "Where are you hiding my mother?" I teased.

"She's in the dining room playing Yahtzee," someone answered. "We aren't hiding her."

I jaunted to the dining room, set my coat and purse on a chair and went over to hug her. As she always does when I suddenly appear out of nowhere, her eyes lit up and she said, "Hello!" Then she introduced me to the other players. "There's no denying that she's your daughter," they laughed. (I do look a lot like my mother.)

She was in a wheelchair. (Nobody had mentioned that to me. But they probably didn't think to tell me that.) I was glad to see she was resuming her place at the games. She loves to play Yahtzee and Bingo.

"She's a writer," Mom informed her friends and the assistant activities director.

"I didn't know that," Mary said.

"I was so impressed with the Yahtzee players I wrote about them in one of my stories. I call them the Hotsy Yahtzee Ladies."

Mary laughed.

It's true. They are fun to sit with at the Yahtzee table. And I am so pleased to see that Mom has friends. Dad never allowed her to have friends. Well, that's the way I understood things. I guess I could be wrong.

I am spread all over the place, trying to take care of my husband and home, helping my children with childcare when they need someone to babysit their children, writing, writing my Family Recovery Center articles, cooking, shopping...But I am trying to get to the nursing home more often. A couple of times a week doesn't seem to be enough. I wonder if that is considered frequent visiting, though. At the Social Security Administration they asked if we visit more than once or twice a month. What??? There are three of us siblings. If each of us is there a couple of times a week, there's someone checking on her welfare just about every day! The rep seemed surprised.

Mom doesn't remember a minute ago, these days. But she does remember who we are. Sometimes she has a little trouble swallowing. That's a little scary. She's still a fighter, though. Still mentoring her children and grandchildren, God bless her!

I pray every day, "Please, Father God, be kind to my Mother."

(c) 2010 Cathy Thomas Brownfield
All rights reserved -- Please contact author for reprint authorization

I wish I could go to my home

2009-12-03T19:55:00.001-08:00

The decision to move Mom to a nursing home did not come easily. And some lowlife jerk said our lives became easier when we dumped the old lady in a nursing home. I would LOVE for someone to introduce me to that person. I have something to share with him.

Mom has adjusted to living at the retirement center. That's what it's called, but even the staff calls it a nursing home. Much as we know Mom wants to be in her own home, she accepts that we need for her to be in a safe place because she wants us to keep living our lives. She doesn't want us to put our lives on hold to take care of her.

She looks very well. There are people who talk to her and then say to a staffer, "That woman does NOT have Alzheimer's." Well, if they were around for a little while they would see that, indeed, she does. She still talks about her trip to the North Pole. (She never went there.) It was actually a trip to Nova Scotia. Mom had painted a picture from Peggy's Cove that she found on a calendar. She wanted to go there to see it. Dad said he wasn't going, so she got into the truck (camper on the back) and drove herself to Peggy's Cove.

As my brother described AD, it's like the thoughts go along the track in the brain and short circuit when they reach the gunked up spots and when the short circuit occurs, thoughts become jumbled. That's quite a graphic to consider.

I was reading ADRC Pathways, the University of Pittsburgh Alzheimer Disease Research Center's fall 2009 newsletter. (You can probably read the same stories at www.adrc.pitt.edu.) Headline: ADRC Embarks on new study of brain aging in cognitively normal volunteers. Essentially, they want to use "state-of-the-art brain [imaging] of our volunteers who are cognitively normal as part of a new study on brain aging."

I have to tell you, I'm tempted to call them and say, "Let's do it!" I am terrified that I will be the next generation of AD in my family. When I visited Mom this evening everyone said they knew who I belonged to without even asking!

By studying the aging process of normal, healthy aging brains, they will study the subtle changes that occur to the brain over time and get a look at what leads to the development of AD/dementia. Perhaps it will even result in finding treatment for early diagnosed AD. And wouldn't that be a wonderful thing since it was announced at the July 2009 international Alzheimer's conference held in Vienna, Austria, that AD is at epidemic proportions globally?

Why can't I go home?

2009-08-26T11:47:00.000-07:00

“I don’t know why they won’t let me go home,” Mom said. “I wish I could go home, but it’s not likely that’s ever going to happen. I think I probably am going to die here.”

“If it wasn’t for the Alzheimer’s, Mom, you wouldn’t have any reason to be here,” I answer each time we have this conversation because it is the truth. It breaks my heart that Mom has to live at a nursing home, but the other truth is that she said I should go home and live with my husband because that is my place and the only way that could be was to place Mom where she would be safe.

“Is anyone staying at my house?”

“No. Your house is just the way you left it. Richard and the neighbors keep an eye on it.” I don’t tell her that I keep thinking I should see if I can buy her house, to keep it in the family, and to make sure it is still there if a cure for Alzheimer’s would come and she could return home.

“OK. Good.” She is satisfied with the answer. “I don’t think my Alzheimer’s is as bad as other peoples’. It’s not as bad as the doctor thought it would be by now.”

“It’s pretty bad, Mom, because your short term memory is gone. You’re still pretty good with the long term memory, though.”

“What is short term memory?” she asked.

“A minute ago, five minutes ago, half an hour ago.”

“I remember five minutes ago.”

The leading question: “Do you remember we were in the dining room?”

“Yeah.”

Now the trick question: “What did we do there?”

“I don’t remember.”

“Do you remember we played Yahtzee with Catherine, Effie, Helen, Mary and the activity director?”

“Oh, yeah? I don’t remember.”

“I know, Mom. That’s why it’s called Alzheimer’s and why you can’t live alone at home.”

“What did you say that was—what I don’t remember?”

“Short-term memory.”

“Yes. I’ll work on short term memory.”

“I don’t know if you can change it, but it won’t hurt to try, Mom. It won’t hurt to try.”

The visit was a good one. I enjoyed Yahtzee in the dining room. I enjoyed crocheting with Mom in the sitting room. So, why did I cry half of the way home?

My brothers and I moved Mom from her home to a safe shelter from the Alzheimer’s storm the day before my 56th birthday. One of my brothers said, “It’s kind of a birthday present for you.” I didn’t answer that because it pierced my heart so deeply. A better woman would have stayed to take care of Mom, because this woman was torn between taking care of her mother and eliminating the stress on her marriage; torn between two of the most important people in her life: her mother and her husband. What kind of birthday present was that?

In the six weeks since Mom moved to the nursing home I see I can be more objective…I see the Alzheimer’s progressing. I see my mother 25 minutes away from us. I see her slipping into the Alzheimer’s cocoon where we won’t be able to reach her.

“I’m sorry I don’t get here more often, Mom,” I say. Two or three times a week is the most I've been able to manage. Is it because August is such a busy month? And what about when winter comes and the roads are icy and the snow storms come? I'm afraid to walk on ice because of a fall a few years ago. I don't want to break a hip or something.

“Don’t you worry about that,” she says. And I recall how she said when she doesn’t know us any more we should stop coming to see her because she will be gone. I choke at the thought.

“I’m surprised I can still crochet,” she says.

“You learned it a long time ago when you were a child, Mom. That’s why you remember,” I said. I said nothing about the simple double crocheting she does now, and I fear she’s forgotten how to crochet the octagon-shaped blocks for the bedspread she was making before the move. The bag with that work is put away, out of sight, out of mind.

Please, God, I weep, please be kind to my mother.

I pray that prayer like a mantra, over and over again. And rush on to the next item on my to-do list. Keeping busy within my family distracts me from the grief of slowly losing my best friend, my mother.

© 2009 Cathy Thomas Brownfield

One day at a time

2009-08-20T18:47:00.000-07:00

"We are too close," Mom said one long ago day. "When something happens to me you will have a hard time. I don't want you to hurt so."

"The memories will keep me going, Mom. You let me worry about all of that when the time comes," I said.

I want to always have memories that assure me I was a good daughter, the best I could be for her, that I always was loved unconditionally. That I had a wonderful, loving mentor to encourage me, urge me to take chances when I would have not even tried because I was fearful that I would fail. My mother always has believed in me, and still does.

I visited her today at her new home.

"I'm so glad you came to see me today." She held my hand and I felt her nails piercing my hand, her grip was so tight. I let her hold onto me. If it gave her comfort and reassurance, so be it. "I love you, Cathy."

"I love you, too, Mom."

"You're the best daughter."

"You're the best mom."

"I don't know about that."

"I had to get it somewhere."

"Thank you."

"Thank you for being my mom."

We talked about the afghan she was finishing. A while later, following a few moments of silence, a lull in the conversation...

"I love you, Cathy."

"I love you, too, Mom."

"You're the best daughter."

"Even with all of my flaws?"

"You don't have as many flaws as you think you do."

"Do you think so?"

"Yes. I wouldn't trade you."

"I wouldn't trade you, either, Mom."

"I wish I could go home, but I think that probably isn't going to happen."

"If they come up with a cure for Alzheimer's, I will take you home in a heartbeat."

"I don't think my Alzheimer's is as bad as they thought it would be by now."

"It's an individual thing, I think," I said. "I credit the Namenda for holding the progression back."

I know the problem with Alzheimer's--her Alzheimer's--is that her short term memory is gone, has been gone for some time. The short term memory is important for her safety. She can't live alone because she can't remember putting something on the stove to cook. She can't dispense her own medications. She can't drive herself anywhere. Someone needs to be there to watch over her shoulder and keep her safe.

My cousin visited Mom and Dad a year and a half ago. When she was ready to leave to catch her plane she told me she didn't think Mom and Dad should be living alone. I began to watch them more closely. I visited more often. When Dad passed away we knew Mom couldn't live alone. When she insisted I go back to my home, our only option was a nursing home.

We wanted comfort for her, a place with caring staff, clean and pleasant surroundings. We found it. But still, is any nursing home good enough for our mother?

For now things are as they need to be. For now we are doing the only thing we can. The financial hit is costly. What happens to people whose homes have been sold if an Alzheimer's cure comes along?

Let's take things just one day at a time...

(c)2009 Cathy Thomas Brownfield

Moving forward

2009-08-10T10:22:00.000-07:00

It's been a challenging year. So many major life-changing events have occurred. In mid-July the decision was made. The one we so dreaded, and feared. Mom was not happy about moving to a nursing home. She continues to say that she wants to be at home because they aren't doing anything there to help her. Nobody, she says, comes to visit her. She wants to go home.

My middle sibling told her, "I can't do anything about it. My brother and sister are the POAs." Well, my first reaction to that was, "Um, it wasn't our choice. It was what Mom and Dad set up." My second reaction was, "Get on the same page with us!" The third reaction was, "You were in denial a long time. We've been with this since the beginning so we are more acclimated to it." My best advice to this sibling? "Don't visit later in the day when it's getting on to bedtime because of the sundowners thing." He was hurt that I didn't recognize that he'd been through nursing home stuff with his mother-in-law and the friend of the family who helped to raise his wife. "It's different when we're talking about our mother," I answered. "Go home. Rest and relax. She will not remember that you even were there."

I was right. She wanted to see me at that very moment to talk to me, but Bill said it could wait til morning. I knew she wouldn't remember by the time I got there. I was right. She did not.

"Nobody comes to see me," she said.

"Mom, that's not true. Richard and Dawn come to get your laundry and bring it back clean. They are here at least three times a week. I am here at least three times a week. And Bill, doesn't he come to visit with you while Deb is having dialysis?"

"I'm going to start writing down the dates and names of my visitors. You all keep telling me these things but I don't remember."

"I'll bring you a notebook," I said.

When we arrived she remembered that her brother Ira and his wife Evelyn had been to see her. That they'd had a nice, long visit. But by the time my husband and I were leaving, she did not remember they had been there. We must have missed them by only a few minutes.

"I don't like it here," she said. "Nobody talks to anyone else. I could sit alone at home and crochet."

"That's not what the staff tells us. You go and play Bingo and Yahtzee. Last week when I came to see you we went to the dining room for a sing and ice cream social with the folks from two local churches and a couple of days later when I came we had birthday cake and ice cream for the July birthdays. Richard said when he comes to see you he has to go looking for you because you're never in your room."

"I'm going to have to start writing things down because you all keep telling me these things but I don't remember them."

"That's because it's Alzheimer's, Mom."

"I was doing fine at home before I came here. I was living on my own, taking care of my house, doing my cooking."

"No, Mom. When Dad went into the hospital the last time I came to stay with you. When he died I stayed on and stayed with you for four months because you couldn't stay alone. I did the cleaning, the cooking...I made sure you got your meds and ate right. You finally said you wanted me to go home because I belonged where my husband was. The only way I could do that was to move you here."

"That's true," she agreed without any argument. "I just hate it here."

"How about we just take one day at a time. If they come up with a cure for Alzheimer's, we'll have you out of here in a heartbeat."

I didn't tell her that by that time the house will be sold to continue to pay for her to live at the nursing home. But she will always have a home with her children.

It's been an easier transition than I anticipated. But it's hard to go to her house when she isn't there. The neighbors told Richard how hard it was to look at that dark house so he goes over and spends time there with the lights on. He said when the house is sold he will have to sell his house and move, too, because he won't be able to handle seeing other people going in and out of the house that was home for 52 years...well, for him, 48 years. He and the neighbors sounded like they are hopeful that my husband and I will buy the house and live there. Does this mean you CAN go home again?

Alzheimer's. It is a devastating disease. Mom will forget, but we will remember for a long, long time.

(c)2009 Cathy Thomas Brownfield

Perspective...trying to hold onto it

2009-07-09T07:45:00.001-07:00

It's a bad day. It was a bad day when we went to bed last night. My daughters, trying to be supportive and helpful, gathered at my mother's house last night for a girls' night. We used to have them at McDonald's or East of Chicago pizza shop. I started it a couple of years ago to give support and encouragement and connection to my daughters because I felt like we were getting too far apart, not together enough. It's hard to love people you don't know any more. So my daughters have been my lifeline for this past four months while I've been staying with my mother.

So, last night we had girls' night. We sat in the kitchen around the table. Beth made healthy fruit smoothies. Christie and Annalyse went through the McDonald's drive-thru to pick up sweet teas for everyone. Christie brought a strawberry-peanut butter and jelly pie. I had baked from scratch peanut butter cookies the day before. We remembered a lot of funny things that happened when my children were growing up. And now my daughters are making those hysterical memories with their own children and shared them. Leslie snapped lots of photos with her digital camera. Ashley had to work and couldn't be with us. (I surely missed her.) We laughed a LOT. And it was nearly 12:30 when Mom went up the steps to bed.

As the hands of the clock crept past her usual bedtime I worried what it would do to her routine. She came downstairs at her usual time. I said, "You need to shower this morning because we're going to have lunch with some of my friends today, Patti, Roxanne and Maureen." "What time are we doing that?" she asked. "About 11:30." She went to the living room, sat down to read the newspaper and I knew right then she was NOT going to take a shower today.

I checked my brother, Bill's, schedule. His wife has a doctor appointment so I didn't even ask him to come here. How could he when she has to be there at noon? I emailed Patti to let her know I had to cancel. Then I called Patti's cell to let her know because I was afraid she wouldn't see the email.

Mom demanded to know why I made so much breakfast for her. "You always have two eggs, two slices of bacon and two slices of toast."

"I don't know why you're always yelling at me," she said. "You are all the time telling me I am doing things all wrong." "I don't know what you're talking about, Mom." "I enjoy having you here, but I don't like you all the time yelling at me." "I don't know what you mean, Mom. I don't yell at you." "Yes, you do." "Don't talk to me the way you talked to Dad. I'm not Dad. I'm not your sister. I am your daughter."

"I can't get this plug to fit in the sink," she said. "It won't go in that side," I said. "Yes, it will." "No, Mom, it won't." "Don't yell at me." "I'm not yelling at you." "If you don't like the way things are at my house go someplace else," she said. "I will take care of that, Mom," I said. "Good." "Mom, I'm here to help you, just like you asked me to all those years ago." "I did not." "I'm not going to stand here and reason with Alzheimer's." "Oh, go to Hell." "I'll meet you there, Mom." Should I have asked, "Isn't that where we are now?"

I don't know why I didn't start screaming at her. I kept saying, "I don't know what you mean. It's always quiet here." She insists I'm always yelling at her.

To prove to me that she is able to take care of herself she decided to do the breakfast dishes. Couldn't get that plug to work in the right side of the sink even though I told her it would fit only in the left sink. I finally risked her wrath and went to the sink to put the plug in and start the water. "I couldn't get it to work," she said. I walked away.

The problem is not a new one. Didn't I tell my family that Mom does much better one-on-one and very calm and quiet? Why didn't I think of that when my daughters said they were coming for a girls' night? Mom loves my girls. They adore her. But it was too much for her. I've told them all that we can't do any more girls' nights with Honey. They call her Honey. She always liked having a different name than the other grandmas.

My brothers insisted that we have to do something different. That I can't stay here with Mom any longer. They are amazed that I've stayed this long. I was trying to do what Mom wanted, to keep her in her home as long as she could stay. It seemed--and still does--that it was so little to ask when she sacrificed so much for us when she was raising us and even helped us so much when we were adults raising our children.

I talked to someone at PASSPORT. The process is begun. We will be moving Mom to a nursing facility. The person I talked to said, "This will let you become a daughter again instead of a caregiver. What I know for certain is that I don't want to argue with Alzheimer's. There is no winning an argument with Alzheimer's. And I can't live in isolation this way. It's not fair to my husband, my children, my grandchildren, or me. I'm not quitting. I'm just making adjustments that have to be made, my brother Richard has made me realize. He's my rock right now. I don't know how I'd have been able to do this without him riding in on that white steed wearing that shining armor.

Please, Father God, be kind to my mother.

(c)2009 Cathy Brownfield

Troubling

2009-06-30T06:07:00.000-07:00

It's a troubling time. All weekend Mom kept confusing me with her older sister, Grace, who died several years ago. It's not a new concept, or a surprise. It's common in Alzheimer's. But disturbing to me as I try to measure the progression, as we try to determine the next steps we must take. As I pray to God, "Please, be kind to my mom. She always has been loyal and true to you, to her parents, to her husband and family. Please, Lord, be kind to my mother."

Sunday evening we heard something knocking. It sounded like knocking on a window. I looked but saw no one, so I went outside to investigate further.

"You looking for something?" Carol and Fred called to me from next door.

"We hear knocking. It sounds like a critter between the walls."

"Oh, boy. There are squirrels that run the gutters on the house," Carol said.

Just then the knocking started again. My eyes followed the sound my ears heard. A critter was knocking at the basement window. "Let me out! Let me out!" his panicky tap-tap-tap seemed to say. How? The window doesn't open from outside and I wasn't going down into that cellar. But the front window would if I could find something to prop it open. I don't know if it escaped, but the knocking stopped.

I can't help but compare the event to Mom's condition. Like when I have to say, "I'm your daughter, not your sister."

"Oh. I wish my brain would work right."

"They call it Alzheimer's, Mom."

"I know."

Or when she goes over-the-top angry at something someone says--usually me, now that Dad is gone and I have taken his place as primary. Perhaps it's the only way she has now to beat on the glass, "Let me out! Let me out! I don't want to be trapped here. I need to be free!"

As many well-known names as have gone to bat for Alzheimer's research, I can't help thinking the answers should come more quickly. I can't help thinking that profit margins come into the picture--or rather, not coming into it so everyone would know it's all about profits. Isn't everything? I can't help thinking about the wonderful minds that have been lost to Alzheimer's and dementia at a time in a person's life when they would finally be able to enjoy chasing their dreams after raising a family and working for all of those years. And how many more will be lost between now and the cure on the open market, no doubt at a high cost. (I'll let you determine those high costs.)

How sad that I should feel such skepticism for this miraculous age when Floyd writes to me to say, "I call my sister less now. She has Alzheimer's. She doesn't even know her children now, has lived at the facility for a year..." I know it's just a matter of time for my mom. I can't change a thing. I can't prop open a window that will allow her to escape from the Alzheimer's.

Dog Days

2009-06-24T06:05:00.000-07:00

This has nothing to do with dogs. Or August. Or summer. If I were to associate this with any kind of season, it would be winter...cold, hard to downright brutal. I am overwhelmed...by life's unexpected, twisty, worse than pretzel turns. Guilt eats at me because I am not equipped to care for my mom in her greatest hour of need. I have a "visitor" aka sitter come to stay with Mom while I sneak out of her house and down the street to meet my brothers so we can go to look at nursing/retirement facilities. We don't know how to tell her what we're doing without upsetting her. And my brother asked the question, "How can we just take our mother and drop her off somewhere like that?"

The agent for Whispering Pines in Columbiana called me a few minutes ago to touch base with her. Last week she sent cards through the mail to both of my brothers and to me. The facility was the most affordable and the most beautiful that we've looked at. We all agreed that Mom would be very content there. But the doors are not kept locked. There are caregivers, but residents can walk out the door alone. Mom is in late stage Alzheimer's.

As much as she insists her Alzheimer's "isn't progressing as fast as they thought it would. I can live on my own. I don't need anyone to stay with me," the fact is, she doesn't remember something I told her one minute ago. If we have a visitor, she doesn't remember they were here five minutes after they are gone. If we go to visit someone else she says, "I never go anywhere. I can't. Bill died. He made sure I'd never be able to drive again." THAT she remembers. She remembers the doctor saying, "You used to have such a good brain." She doesn't remember calling me a liar. Or telling me, "Go to hell!" She doesn't remember to take a shower. When I bring it up she gets angry. "It's funny that I lived all of my life without you around to tell me when to take a shower!"

Mom always has been conscious and meticulous about her hygiene. I know I'm battling with Alzheimer's. I call it battling, but it isn't really a battle because I have stopped fighting with it for the most part. What is the point in upsetting my mother to the point of anger, belligerence and combativeness? What is the point in upsetting myself, driving my blood pressure up and having a stroke? I remember a bit of advice sometime long ago: Choose your battles.

I have talked with friends. They all advise me the same things: Place Mom where she will be safe. Those words cannot be taken lightly. Look at the global economy. Look at the budget cuts. Look at the reputations of the facilities vying for my mother's pocket book. Our state representative, Linda Bolon, says in today's morning paper, that the libraries aren't the only things that are going to be cut. Why do I feel like every facet of our current way of life is under fire and on the edge of a revolution? Am I the only one who sees that if we place Mom somewhere and all funding is cut we will have another crisis on our hands as her condition progresses? That's probably my writerly imagination at work. Sorry. We all know that the caretakers don't get away much. Without social stimulation from the outside world it's easy to become out of touch and have to entertain thoughts inside your own head that don't meld well with the outside world.

I had dinner with Matt and Mary Catherine Monday evening. Matt was my Spanish prof at Kent State. Mary Catherine was another student. We just kinda melded into a Three Musketeers trio. Aren't there programs out there to help you with your mom, Mary Catherine asked. Your mother wouldn't want you to be going through this if she knew, Cathy, Matt said.

So, yesterday I called the Area Agency on Aging. Ms. Davis forwarded me to the screening desk. A voice message said someone would be with me shortly. Calls were being answered in the order in which they came in. The second voice message said, "There is no one available to take your call. Please leave a message. Someone will get back to you within three business days." Oh. I suspect this will be a common issue as the economy spins out of control and past the point of no return. I left my name, phone number and a short message. Three days will be Friday. I doubt there is much help coming my way this week, especially not on a Friday.

I read a news story online. Sink holes in the Dead Sea. Water shortage in the "parched moonscape" is the "lowest point on the earth." A few days ago I read a news story online that a once-upon-a-time lake on Mars has been discovered. Oh. Are we doing to Earth what was done on Mars once-upon-a-time? Sorry. My sarcasm is showing.

I grew up with a strong faith in God. Great-grandma Alice Crawford instilled faith in my mother. She lived with the family and slept in the same bed as my mother. Every night she read the Bible to Mom until Mom dropped off to sleep. Mom didn't read the Bible to me every night before I went to sleep, but she did teach me about God and I have a very deep faith in Him. What do people who don't believe hold onto when they are in their darkest hours?

In the early 1980s there was a deep schism in our church. Two men fought over control of the little church. I was reeling from the horrible economy, what they called the Economic Malaise, and went to church for comfort and re-energizing. It was so bad at church that I felt worse when I came out than when I went in. That's not a place where God was. I stopped taking my family to church. Years later, I realized that we should have a minister who knows us, someone to perform marriage ceremonies and funerals. I didn't want a stranger to speak over my loved ones. So I went back.

But a year ago, the minister threw the last straw at the camel's back. We are NOT supposed to judge each other. What my mother taught me is NOT lies. Continually singing the praises of the "few faithful", the same "few faithful" time after time wasn't just offensive to the rest of us who were not deemed faithful, but I was embarrassed for the people he was naming. How can he say one time, "My church family is the most important family to me?" and another time say, "Sorry, but my family is the most important even above my church family"? What does he mean when he says, "Don't come to me with your problems. I can't help you with them. I don't know the answers. I can't advise you." But the most offensive thing he said, "We're in the saving souls business, not the helping the needy business." Wait a minute. Isn't that why the disciples appointed elders and deacons? The deciples had so much work to do in saving souls they appointed elders and deacons to take care of the needs of the people??? What did I miss here? And doesn't every minister know that when a family is worried about paying the rent today before they are evicted and how they're going to feed their children so the kids don't go to bed crying from hunger pains, the last thing on their minds and agendas is where their souls are going to spend eternity! This minister holds a master's degree in mathematics. He never attended seminary. What does he know about being a minister? What does he think the word even means? That minister has not called. Has not come to visit me. I don't know why he came to my dad's calling hours because he never came to visit my dad. Didn't visit my dad in the hospital. He has never been here to visit my mother. Must be appearances. His wife said, "Oh, don't hug me. I've been sick." But she hugged my grandsons. Yeah. That's what I thought. Ministers like this one now leave a bad taste in my mouth. If that's what heaven is made of, maybe I don't want to go there. I just don't think that's what heaven is like. That's not how God operates.

So, here I am. No church family to rely on, no minister to minister to us. I am at the Physician, heal thyself status. It's me and God to lead my family. That's not exactly true. Friends, near and far, talk to me, even if it's just in email. They are blessings to me. But it still doesn't solve my dilemma: the best care in my mother's best interests. What am I going to do? What am I going to do? And the others still judge me. I got a card from Shirley and Bill, "I hope you find your way back to God," she wrote. Find my way back to God? I left that church so that translates into leaving God??? Uh...no.

Caregivers are so isolated. I've always known that. When I get through this experience, finish this journey with my mother, I will seek out the caregivers who need the support of others who understand. I will help them because I will know what they are dealing with.

I apologize for whining. Mary Catherine said I should be myself. I shouldn't put up the facade of a strong woman who never cries. Well, I won't go that far. I've been crying a lot lately. Alzheimer's is a heartbreaking, tear-jerker disease. I am saturated by it so it overflows into my writing. All of my writing, in one way or another.

Please, God, forgive me when I fall short. I'm doing that a lot lately. Please, God, help me to forgive the church family that I feel has let me down. I surely must be looking at this all wrong. Please, Lord, give me eyes to see and ears to hear and an understanding heart. Please, Lord, be kind to my mother. Please, Lord, bear me up and make me steadfast and strong, not just for myself, but for the people who depend on me, who look to me for wisdom and knowledge, who don't have the abilities to see and hear and understand as well as some of the rest of us. Lord God, please don't forget about us wayward humans who think we know everything and still don't even know all of the questions. Your will be done, Lord God. Amen.

Barry Manilow

2009-06-22T13:33:00.000-07:00

This post...you may wonder what possessed me to write it in my Alzheimer's blog. It IS related.

My sister-in-law heard a radio spot promoting the July 6 Barry Manilow concert at Mellon Arena in Pittsburgh and called my brother. "That has my sister's name written all over it," he said. Then he came to see me.

"I want to give you a birthday present."
I was a little suspicious about the way he said it. "What kind of birthday present?"
"Tickets to the Barry Manilow concert at Mellon Arena on July 6."
"I don't know my way around Pittsburgh. I'll get lost!"
"I'll set you up with my GPS. It'll take you right to the place."
So, I checked with my husband. He likes some of Barry's music, but I wouldn't call him a fan. He agreed to go with me. My brother said, "You'll have Cathy alone for a while." Alone with how many other fans filling that place???

The point is, my brother and his wife have noted that I am with Mom around the clock. I finally gave up sleeping on the sofa and moved upstairs to the extra bedroom so I'm getting a restful sleep.

"You don't do much. You are always here. You need to get away. This is perfect for you." He handed me cash. "For parking. And you have to buy a t-shirt. You have to. That's a requirement at a concert."

I have NEVER gone to a concert. I am so overwhelmed with emotion that my brother and sister-in-law are doing this for me. I know I chose to take care of our mom. I'm the only one who doesn't have a full time job or a sickly spouse to take care of, so it's just logical to me that I be here. Having my wings clipped, though, limiting my activities when I've just graduated from college, is a big adjustment for me. You know, it took me 28 years to get that degree. I'd like to do something with all of that knowledge!

The ONLY thing that could make this event better is if Barry himself said, "Come on down out of that balcony and sit here in front." And if he sang "Time in New England" or "When October Goes" or "Magic." I've GOT to stop at my house and pick up my Manilow CDs. Dad may be gone, but his CD player is right beside me when I am working on my computer. Only thing is, when that music is playing I'm singing along and on my feet movin'!

The concert is still a couple of weeks away, but the anticipation of it has re-energized me. I've spent a lot of the day working on the sequel to my first novel that is in the hands of a publisher as I write these words, going through the readers. Then, I did something I haven't done in, well, I can't tell you how long because it's BEEN so long! I baked chocolate chip cookies! Mom's nose led her to me and the kitchen. LOL. She really liked the aroma wafting through the house and I noticed the twinkle in her eye that I haven't noticed much lately. I know she's leaving us a bit at a time, but there are still moments that reach out and wrap themselves around us and she knows. When will I ever stop the tears flowing when I think of these moments I have to write down before they are forgotten and later I will pull out the journal or the stories and read them and remember the moments for both of us.

Emotions. They run rampant with me. I'm a writer, a creative mind who long ago said to God, "I want to feel the full extent of all the emotions so I will understand and be able to write the things that will touch hearts and minds and let them know they are not alone.

So I'm sitting here crying small tears about my mom and the way she tries to keep using her brain. And she comes around the corner with some money folded in her hand.

"Cathy, I want you to take this and use it toward your schooling."

"Mom, I'm finished with school."

"I thought you said you were going to go some more."

"In a year."

"Then you tuck that away and use it when you go. If I can give you more I will. I just don't have a lot to give you."

And I thought of the woman in the New Testament. She threw her pennies into the collection basket and was criticized because it was so little. But Jesus said she was blessed because she gave all that she had.

Mom has given all that she has for the family she has loved all of her life, even when she wasn't sure she was loved back. She still has given her all. And that is why I am staying here. That's why I look after her. That's why I won't give up on her. I have her back. Lord God, I have her back. And you have both of us in the palm of your hand.

And I'm bawling my eyes out. Mom, too.

(c)2009 Cathy Thomas Brownfield

Home away from home

2009-06-16T05:55:00.001-07:00

We've started to look at nursing homes. And it feels like betrayal. In understand this is common for family members who face this hurdle in the Alzheimer's game. I am remembering something Hazel Burnip told me a LONG time ago. She said to find out about things I'm going to need to know before we arrive at an emotional crisis point when we can't think clearly because of the immediate stress we are coping with. At the time we were in the midst of the Economic Malaise, circa 1980. My family was one that "fell through the cracks" of the federal government system. The advice is still good today.

We went to the Alzheimer’s facility about fifteen miles from home. We visited unannounced. Surprise inspection.

• Away from the main road.
• Pleasant surroundings.
• Doors kept locked.
• Peaceful throughout the building.
• No lingering unpleasant odors.
• Residents seem content.
• Two people to a room.
• Hair salon
• Caring staff, by all appearances.
• Facility like a hospital…sorta.
• Missing: home and family.
• Issue: Distance from family and home.

We drove into town to check out the retirement community. I had heard good things about it.

• Beautiful surroundings.
• Beautiful rooms, one resident to a room.
• Homey, family atmosphere.
• Beauty salon.
• Small store for essentials like shampoo and toilet paper.
• Residents bring their own belongings/furnishings and personalize their rooms.
• I could stay with her for a few days while she settled in.
• Friendly staff.
• Missing: doors are not locked. I fear they are not equipped to handle advanced Alzheimer’s.

The facility is beautiful and I think Mom would like it there, but with advanced Alzheimer’s we don’t want to get her settled in somewhere just to yank her out and move her somewhere else. We have other places to check out. Personally, I want to buy the nursing facility in our town that is moving to new digs in another community. I’d like to make it an Alzheimer’s facility, one person to a room where desired, roommates when desired. Homelike atmosphere, one wing at a time. It had strong roots but has fallen into disrepair. It’s close to home. And there is only one other place in our town.

Last night we talked awhile, my sister-in-law Dawn, my daughter Christie and me. Dawn said we have to think about Mom’s safety. Can’t argue with that. But it still feels like I’m betraying the woman who sacrificed for all of us forever. She made sure we had even if it meant she went without. “That’s what Mom is supposed to do,” she said. Richard may remember some of the things that happened, but he was so young. I know he doesn’t remember a lot. Some happened before he was born. Our mother…she was a warm, smart, intelligent, compassionate, generous, strong woman. When we play the Alzheimer’s Peek-a-Boo game, she still is. Those moments are fewer these days.

Mom said to me, not too many days after her Alzheimer’s diagnosis, “The day will come when you will have to put me in a nursing home. Do it. I will probably argue with you. But I trust you to do the right thing. And when I don’t know you any more, stop coming to visit. I will be gone. All that will be there is an empty shell.”

As if…

As if I could not go and sit and hold her hand and remember all that she was “in the days.”

As if I could leave her alone in a silent world, isolated from everyone and everything.

I say these last words facing the unknown of the Alzheimer’s progression. For, although all AD patients share some symptoms, each case also is individual.
In my heart I keep thinking about causes. Why did this happen to my mother? I pray to God it wasn’t created in a laboratory somewhere to be exploited by pharmaceutical companies for profits.

Remember on the X-files, the woman who said (just before she disappeared), “No matter how paranoid you think you are, you probably aren’t paranoid enough.”

(c)2009 Cathy Thomas Brownfield ~ All Rights Reserved

2009-06-10T08:08:00.000-07:00

Nobody said life would be easy. In fact, Mom said it was not easy. But she expected us to do the best we knew how. To be responsible and reliable, dependable. To be honorable.

I ponder the lessons of my growing up years, all the things Mom taught her children. She had high standards for us, and we tried so earnestly to work our ways through those youthful years of peer pressure (two wrongs don’t make a right and if those kids all jumped off Canton Bridge, would you jump, too?), bullying (that boy who tormented me 50,000 times a day in the corridors of David Anderson High School), and the problems at home (why did Dad do some of the things he did that caused extra issues?)

Mom insisted, “He’s your father. You will respect him because without him you would never have been born.”

Yes, Mom held us up to high standards.

I remember the day she said to me, “The time is going to come when you will have to put me in a nursing home. I know I am going to fight you about it, but you have to do what you have to do. I expect you to do what you know is right. When I need to go to a nursing home, do it. And when I don’t know you any more, don’t come to visit me because I won’t be there. I will be gone. There will be only a shell there in my place. I trust you to do the right thing.” She had just been diagnosed with Alzheimer’s at that time.

I promised that I would always do the best I knew how to see to her best interests. And look at where we are now.

On Monday I said, “Mom, you wanted me to remind you to take a shower this morning.” She complied and I thought I had won that silent battle. However, when she came out of the bathroom, fully showered, she said, “It’s funny how I lived all of my life without you around to tell me when to take a shower.” Things escalated from there. I knew how long it had been since she had showered. But she would have none of that. I was a liar, she said, and had no business telling her what to do. Well, at least she had taken the shower and shampooed her hair.

On Tuesday she came to me. “Where is my checkbook?”

“Why?”

“I have bills to pay.”

“Your bills are all paid.”

“I want my checkbook.”

“Sorry, no.”

“It’s my checkbook.”

“Yes.”

“It has my name on it.”

“Yes. And Richard’s and mine.”

“You are living in my house.”

“I am staying at your house so you can stay in your home. But if you want me to leave, that’s fine. Here are your options: me, Bill, Richard or a nursing home.”

“I’m not going to a nursing home.”

“The time is going to come when you can’t make that decision.”

“I want my checkbook.”

“When Richard gets home we will talk to him. If he says to give you the checkbook I will give you the checkbook.”

“If you don’t give me my checkbook I’ll tell Richard.”

“OK.”

Not even two hours before this Day 2 battle (two days in a row) she had called to me, “Does my crocheting bother you?”

“No.”

“Bill didn’t like it because I crocheted.”

I ventured to the living room and sat down to talk. “He’s gone and you can crochet all you want to. Does it bother you that I spend so much time with my computer? Fred thinks I’m having an affair with my computer.”

“You can play with your computer as much as you want to.”

Her eyes twinkled. She was smiling and content. Well, maybe we were past the battles for the time being. Uh, now I see that twinkle and smile and contentedness and think, “She’s looking for something to fight about.”

She says, “I am so bored. I would like to do something exciting.” But she doesn’t know what she would like to do. When she said she wanted to go to see her brother, I took her. When my grandson has a ballgame, I take her. When my children and grandchildren have a cookout or family event, I take her. If she wants ice cream we go to the Dairy Queen or McDonald’s drive-thru. I took her to the community choir’s spring concert. By the time we get back home she has forgotten that we even went. I still take her, even though I know she will remember it less than a minute. At the concert she insisted that they had forgotten to sing two songs on the program.

“No, Mom. They did sing them.”

“I don’t remember.”

The time is come that my brothers and I have to keep the promise that I made to her that long-ago day. I can scarcely handle the idea. I cry every time I think about it. My grandmother took care of her mother in her home until the day she died at age 86. My mother took care of my grandmother in her home until the day she died at age 84. Shouldn’t I be taking care of my mother in my home until the day she dies? As far as I know, my great-grandmother never showed any violent tendencies. I was 10 when she died. I remember the day. My grandmother was docile as her days dwindled. She didn’t linger long because she didn’t want to be a burden to her family. I remember the day she passed.

But Mom is over-the-top angry in an instant. The episode on Tuesday—I had my back to her and remember thinking I probably should face her. She used to pummel my dad when he took her in the car until he told her, “If you don’t behave I will take you back home and I won’t take you in the car again.” My husband was with us, so I wasn’t as concerned as I might have been had it been just the two of us.

No, I am not equipped to handle my mother’s care much longer. And so we, my brothers and I, are looking at facilities in our area to place her. I know it has to be done. Why do I feel like a traitor?

© 2009 Cathy Brownfield ~ All rights reserved.

Don't wanna be a tattle tale

2009-05-27T06:17:00.000-07:00

I've found it difficult to write this blog. It feels like a violation of privacy. Alzheimer's is such a private disease, even as it exists in the public domain. Things have changed, there has been progression. I must vent somewhere, not just to reach others who struggle with the disease, either as the one who has the condition or as a caregiver, but for myself.

How did we arrive at this moment in time?

Many times, when I walked through the door, Mom sat at her end of the sofa with her crochet hook in hand and Dad sat in his recliner grumbling because all she did was sit there and crochet. He would look up, see me coming into the house, and an expression of relief crossed his face as if he were thinking, "The cavalry has arrived!" (Is that what my brothers see on my face when they walk through the door?) Dad and I always ended up at the kitchen table, talking over tea. He always made sure there were teabags for me because I'm not a coffee-drinker. At some point he began to drink tea, too.

I think he tried to manipulate me some. So I determined early on to be an encourager to him, but honest with him. The crocheting complaint: "Do you want her brain to die? The crocheting and the Game Boy and the newspaper puzzles are what keep her brain alive. Do you WANT her brain to die? Then leave her alone. Let her crochet! Let her play her games!" I have noted the progression of the AD by the level of difficulty of the patterns she uses. At least she can still hold a crochet hook and make those blocks for a bedcover even if she can't figure out how to join them together. I will do that. We will call it one of our partnership projects. We've had a lot of those over the years before she needed any help from anyone.

"I don't think I can do this," he often said, though the rest of the family believed it was his penance (he was Catholic, the rest of us are not)for all of the times that he let her down.

"She stood beside you through a lot, Dad. When it would have been in her best interests to go, she stayed. You owe it to her to stand by her now. It's not like she chose to have Alzheimer's."

He would grumble. I would listen. And I would ask questions to get him started talking about local history, his family, funny things from his childhood. I didn't ask nearly enough questions or learn nearly enough about his family. We didn't get to spend that much time with those discussions. But for a brief time the stress was lifted and he relaxed, and was perhaps re-energized to go at it all again. At least he was at home.

We spoke often about what would happen to Mom when he wasn't here to take care of her any more. There was no way she could live alone. I kept telling him he had to stay, he had to keep living because I wasn't ready to let go. And there were moments when I told myself to make the most of my freedom because it was just a matter of time when it would be gone.

That sounds like a terrible thing to say. Dad didn't think I understood what it was like, what he was living. He didn't realize that he was getting a taste of what Mom and legions of women through the ages had lived. I know what it's like to be limited where you can go and what you can do when you have children, a family to take care of. I knew I would be passed the caregiver torch, so I didn't fight it. I embraced it, even as I was thinking, "I'm not getting any younger. In 15 or 20 years, will I be my mother?" There isn't much consolation in the 50s being the new 40s. I am terrified of being the next generation Alzheimer's patient.

Dad passed away in mid-March. It is nearly June. I have stayed here most of the time since Dad's last hospital admission, sleeping on the sofa. I sleep on the sofa at Mom's house for a couple of reasons: 1.) To sleep in the little bedroom would mean I have moved into my mother's house. I have my own home, a husband, a yellow lab, a tabby cat, flowers to plant, walls to paper, woodwork to paint. I must remember all the reasons I have for being there. That's where my permanent life is. I sleep on the sofa at Mom's house because 2.) If Mom begins to wander--which she did a little when Dad died--I will hear her before she can wander far. This is my temporary life.

My daughters have said to me that their dad could/should treat me better, that he doesn't appreciate what he has, what he could lose if he doesn't take care of me. So this time of temporary life in my mother's house is also a time of reflection about the things that are most important in a life, to a life.

(c)2009 Cathy Thomas Brownfield

Progress

2009-05-01T07:31:00.000-07:00

Progress can be good or it can be bad. Maybe it can even be good AND bad.

For some time I told my parents that when something happened to Dad, Mom would not be able to stay alone. She insisted she wanted to stay in the house where she raised her children...We moved here when I was 4 years old. I am the eldest.

Dad passed away on March 18. We found that with repetition, Mom came to the point where she could remember that Dad is gone. She may say, "Where's Bill?" But almost immediately she will say, "Oh, that's right. He's gone, isn't he?" Not bad for someone in late stage Alzheimer's.

Mom has created a new task for me. She is still crocheting, at work on a tablecloth. But she can't get the individual pieces (blocks) to fit together right. So after I graduate from college in two weeks she is going to crochet the blocks and I'm going to piece them together. I guess they aren't really blocks. They are circles, so when they are pieced together, smaller blocks/circles will fill in the empty spaces between the circles. We will do this together, just as we've gone through the AD together.

There are difficult days, as anyone who has dealt with AD or is dealing with it now can tell you. One moment my mother can be delightfully happy. She walks into another room and less than five minutes later can return over-the-top angry and combative. I remember that Dad told me when they were in the car and he was driving, if he made her angry she didn't just hit him, she pummeled him. He stopped taking her in the car unless he absolutely had to. She hasn't threatened me in any way, but she has been angry with me.

Fortunately, I have two fantastic brothers. When I text them and say, "Need you now," they are here as quickly as they can get here. (Fast.) My sister-in-law and my daughters are here to back me up when I need to go to class. Neighbors are available to sit with Mom if I need them. There is a wonderful support system here.

But how long will our arrangement work? Well, we take things just one day at a time. Sometimes we take things one hour at a time, or one minute at a time. So far this is working.

Bless you, wherever you are, as you deal with your Alzheimer's situation.

Listening

2008-08-20T06:58:00.000-07:00

There is a reason for everything.

God is in control.

Sometimes the bet thing you can do is just listen.

I didn't want to take a speech class that required me to stand in front of the class to speak, so I took "Listening." That's correct. Listening. We, as a society, don't listen well, and we don't read well, either. We see what we want to see, not always what is. How many times have you said something in an e-mail post and when the reply came into your inbox you knew the person read only part of what you wrote? You can tell by their answer they skimmed through what you said. They didn't read the whole thing.

The listening class taught me to listen; to look a little deeper than just the surface, to pay attention, to momentarily put aside what you are doing, look at the person you are talking with and listen with your full attention. Really listen.

Is this one of the lessons I'm supposed to be learning? Applying to my life? I have the book learning. Have I put it to practical use?

My husband doesn't usually go with me to my parents' home. I don't know why. I appreciate it when he does go, though, so he can sit with Mom and talk--or listen to the same stories over and over again, while I listen to Dad as he vents his frustrations. Everyone needs someone to just listen and encourage them. I try to do that for Dad. It's harder to do, though, when I go to see them by myself.

The latest question: If Mom talks about her parents and brothers every day, the same stories every day, should she continue to go to the elderly nutrition site? Dad is enjoying going there every day. He gets to talk to Frank and others that he knows. I'm thinking that they know about Alzheimer's so it's not really a big deal. But I told Dad to let me know when he's ready to have the meals delivered to the house instead.

He told me, last night, that he's thinking he wants to go back to church. He sits on the sofa on Sunday mornings to watch for me to go to church. He notices what other people wear to church, too.

"I can't believe how people dress to go to church," he said. "They aren't showing respect for the Lord!" When he was a child his mother insisted he wear a suit, dress shirt and tie, even if he was serving as altar boy, entering or exiting through the back door where nobody was going to see him. It was showing respect for the Lord. "You aren't going to church looking like a bum," his mom would tell him.

Dad isn't sure where he wants to go, Catholic Church or the church I attend. At one time I would have said an adamant, resounding NO! to Catholicism, but I have to say that Father Bob has shown more interest in my family than our minister of seven years who has preached several times, "We are not in the helping the needy business. We're in the saving souls business." I disagree with him. If the daily needs of the needy are not addressed--secure roof over their heads, food in their children's bellies, no utility shut-off notices--things that keep them on the rollercoaster of just rolling with the punches because there isn't time to plan ahead--those people aren't going to have time to think about where their souls are going to spend eternity. And all people living in poverty aren't there because they are too lazy to work. Anyone take a good look at the job market in the U.S. these days?

Listening, really listening, to Dad created a little extra something in our relationship. Dad and I have never really talked about religion. We never really talked about anything much. So this chance conversation--I only stopped in to pick up onions he'd pulled from the garden--was of value.

Listening. Sometimes it's the best thing you can do.

Tension

2008-08-16T20:28:00.000-07:00

As I'm learning more about Alzheimer's through my mother's progression through it, I am learning more about writing fiction. I can write about our experiences with a passion. How can I not when this emotional rollercoaster continues to peak higher and lower all the time. And how would I hurt inside if I didn't have gift enough to put the words down somewhere so I can release them, release the anger that overtakes me when my mother chooses a time to jump all over me about something. And a few minutes later she has no idea what I'm talking about when I say, "I don't want to fight with you any more, Mom."

I stopped blogging here. Notice the date of my last post, a year ago this month. It seemed wrong for me to spell out the privacy of my mother's life in such a public display. My intentions were to reach out to other caregivers, other family members, even those with AD who are in the earlier stages and CAN remember.

No one can know the full sorrow of AD until they have experienced it. I have grieved. And told myself that my grieving is done so I can do what needs to be done. The friends at the AD support group online say my mother is gone. But I can see that she still plays peek-a-boo with me. Some days she remembers things. Some days she has trouble. She still knows our names, though.

I ask, "Where do we go from here?" but I think I don't really want to know. I think I prefer to take one day at a time. That's best, one day at a time.

She used to worry...

2007-08-20T09:54:00.001-07:00

...that she would get to a point where nobody would be able to stand being around her.

Dad has his own dragons to slay. He's with Mom 24/7/365. When he can't handle things any longer he goes to the garage or the backyard to putter. To relieve his frustrations he waits until we are alone to roll his eyes and vent. I know he loves Mom or he wouldn't still be there with her. He feels a strong commitment to being there. It might have something to do with the day I said, "She always stood by you, Dad. It wasn't always easy. You need to stand by her, now. She needs you to do that, now."

But I know that it's hard for him to be there all the time, to hear her say the same thing a dozen times...What time is it? What day is it? What time is it? And it used to be hard to tell when something she said was really so or a story. Now the stories are obvious. Dad gets upset with her. The rest of us -- who don't live there 24/7/365 -- just go along with what she says without getting the least bit perturbed. We can walk away, leave them in the safety of their four walls, and not have to go back for a day, a weekend, or a week.

Awhile back I asked Dad to get the motorhome running so we can go camping. Mom keeps saying she'd like to go camping. He told me a couple of days ago that he's almost got things ready so Mom and I can go camping. If I can manage it, we will go camping on weekends until the weather won't permit it any longer, because that's what Mom wants and it seems the very least I can do when her days and years are waning. Waiting another year til next spring may be too long. We've spent too long already thinking, "Someday..." Someday never comes.

Dad deserves time off for being there all the time. He needs to be able to kick back and put his feet up and just be without being on duty constantly to prevent fires on top of the stove when she forgets to shut off burners. And clean out things that Mom won't tend to and gets mad at him when she sees him working around the house.

I'm returning to the college classroom to complete my BA in English...minor in writing...Honors College. I'm trying to finish in a year so my parents can see one of their children graduate from college...with honors. They have always been there, always done their best for their children. I want them to see this.

She's looking for hope.

Stormy weather

2007-08-10T10:49:00.000-07:00

Stormy weather hit our town and everyplace else across the state yesterday and motivated its way over Pennsylvania, Maryland, Delaware and D.C. And lots of other places across the country. The humidity and heat is record-shattering, and one can't help the global warming/greenhouse effect issues coming to mind.

Mom and Dad are staying inside as much as they can. But the steamy windows bother Dad. The central air was on cooling the inside of the house, but the heat outside was so intense, it created vapors on the windows. And they got into a bickering match about it. It's no big deal if the windows steam up. But to Dad it was.

I bought Omega 3 Fish Oil a couple of weeks ago and gave a bottle of it to Mom. If the Alzheimer's research people are doing a clinical trial for this, there might be something to it. It can't hurt. Might help. Mom started to take it immediately, as did I. But remembering to take the time for gulping down these horsepills is an issue for me. It's not so much forgetting as taking the time. Slow down for 30 seconds and take it. What's 30 seconds? Half a minute.

And it's all like chasing the wind. Why am I in a hurry going nowhere?

Mom is always happy to see me when I walk in the door. I need to walk in the door more often. Dad's happy to see me too. He told me he doesn't know how he'd handle all this without me. Well, someone else would help him...maybe. I don't know. I am concerned how I'm going to go to college 12-15 hours a semester for the next 1-2 years and help him and Mom, too. But my brother said I have to live my life for me, so I will do this. Educate a woman and you educate a family.

Disappointing meeting

2007-07-25T17:34:00.000-07:00

I'm writing an essay about the meeting in Canfield. I thought we were going to be able to get Mom into a clinical trial for one of the two Alzheimer's medications that are in the news. The clinical trials on Flurizan and Alzemed are closed. There is no recruiting going on for them. A man asked, "When will the medications be available?" The two researchers, one from the University Memory and Aging Center at Case Western Reserve and the other from Alzheimer Research Center at the University of Pittsburgh, concurred that it will be at least three or four years. The man spoke so everyone could hear, "That's not soon enough."

When we started out, I thought I had to be at my mother's side from that very moment. She took the news so hard. But she and Dad insisted that it was not the time. They didn't expect me to be there every day because I have a family and home of my own to take care of. And so I backed off. It took a lot for me to back off. But, I did. Now I'm at the juncture in the road where I think it's time for me to be there more. And that's OK.

I was going to look for a job. We need a new kitchen range/oven and refrigerator. I need a car. I'm thinking of asking Mom how upset would she be if I used her car for a while. That would take care of that need. I think I need to take my computer to work at their house. It would make things easier for Dad if I'm around. Everything else has settled down pretty much, I think. DD4 will move to the college campus next month. DD3 is either working, with her fiance, or friends or her sisters so I think it's OK now for me to be at Mom & Dad's.

It's not that I want to stop living my life to take care of them. It's that I need to blend their needs into my routine. I need to be there for them because someday I will be the needy one and I hope that there will be someone who will want to take care of me.

Clinical trials

2007-07-09T05:40:00.000-07:00

Mom and Dad were excited about something they read in the June issue of AARP Bulletin. The name of the article: Closing in on Alzheimer's. The drug Flurizan is the buzz word, a very promising buzz word, in this article. But a couple of days ago an Alzheimer's newsletter arrived in postal mail. I didn't open it until yesterday afternoon. And now I'm excited.

When Mom showed me that AARP article, I brought it home, called the doctor's office and asked about it. Mom had said, "I want to get in on the clinical trials." Gina checked with the local pharmacy but Flurizan is not on the market yet. She said to bring a copy of the article down to the office and they would look into it.

Then this newsletter came in yesterday. There are clinical trials open in our area. There will be a meeting in Canfield about these clinicals and the meds in them. I'm going to make the reservations for us to go. I think Mom and Dad both will be excited, too.

To find clinical trials in your area, call 800-439-4380. This government agency, Alzheimer's Disease Education and Referral Center, will help you find studies and and answer questions about them. Online you can find information at www.nia.nih.gov/Alzheimer's or www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials. The Alzheimer's Association is online at ww.alz.org.

Week's End

2007-07-06T06:56:00.000-07:00

Dad has physical therapy today. He's wrapping up three weeks of it for his stiff neck. Mom has her mammogram and some blood work done today before Dad goes to physical therapy. We'll drop him off and go to Wal-Mart to run around while he's doing his thing.

I'm getting ready to paint their bathroom. I was going to do it this weekend but the 4th of July celebration was postponed to tomorrow because there were thunderstorms forecast on the 4th. In fact, we were under a tornado warning until 9 p.m.

There isn't much more to say about Mom and Alzheimer's today. She still is interested in getting into a clinical trial of AD medications showing promise. Like Flurizan, which has reportedly made a difference in AD patients...restoring quality of life. But even that won't give her back what she had before the stroke. She wants to drive, but I told her to drive she has to be able to use her right leg without lifting it into and out of the car. I know my mother. She'll work at strengthening that leg. I don't know if she can realistically do it, but she'll try hard because she wants to drive again.

Thinking

2007-07-02T09:06:00.000-07:00

I can see that the wheels still turn in my mother's brain. When she looks at me and I look back into her eyes I see that she is still fighting to keep her brain function. She still crochets, though the patterns are very simple ones...like the basic granny square. She still works the sudoku puzzles even if they take her much of the day and never are completed. She still reads articles about Alzheimer's hoping that some breaking something will announce a cure or a medication that will give her recovery of what she has lost...or to hold onto what she has still.

AARP Bulletin, June edition, included an article entitled "Closing in on Alzheimer's." It speaks of a new medication MPC-7869, aka Flurizan. For some patients who participated/are participating in the clinical trials, the medication gave them back their memories and quality of life.

"I want to be in on the clinical trials," Mom said. "It sounds like what I've been looking for. I want to try it."

I called the doctor's office to ask about it. The nurse there called the local pharmacy. It isn't on the market yet, but if I take the article in the doctor's staff will try to find out more about it. So, I made a copy of the article and walked it to the office in high heat and humidity, a 15 minute walk from my house. The office was closed...early. I carried the article back home and it's still on top of the entertainment center because the demands are many and the time is limited. But I've added it to my to do list for today.

Notes on a steamy summer day

2007-06-26T19:22:00.000-07:00

It was 94 degrees today, and has been like this for most of the month of June. We rely on A/C to keep us comfortable. A song by The Eagles or was it Don Henley...The heat is on...

When we returned from North Carolina Mom had the June 2007 issue of AARP Bulletin in which there is an article about "Closing in on Alzheimer's." There have been clinical trials for a new medication, MPC-7869 aka Flurizan. It seems to be giving back patient memories, improving quality of life. And Mom wants in on it.

I called the doctor's office. I figure if anyone will know, it will be Dr. G. The nurse said she'd look into it. She called the pharmacist and there was no listing for it. Gina asked me to bring the article to the office. I printed it out and walked it to the office, since I needed the exercise. But the office was closed when I got there, locked up tight. And it was only 4:14 on a day that they should have been open until 4:30. Oh, well.

Tomorrow is another day. Dad asked me to go up to make sure Mom gets her medicine and breakfast in the morning and on Thursday morning while he goes for physical therapy. I'll take the article with me and drop it off.

And we'll see if there is some magical something that will help Mom keep her memories until the day she dies.

New strides ~ New hope

2007-06-18T05:56:00.000-07:00

I stopped to visit my parents last night. Dad asked if Mom had shown me the paper they got in the mail about Alzheimer's. It's actually a publication called AARP Bulletin. The June 2007 issue features an exclusive report on Alzheimer's and the new drugs that offer real hope for reversing the disease. Mom wants to get in on the clinical trials. So I brought home the publication and I'm going to do an online search for more information.

It makes sense that Mom would want to do this. She was one of the early successes for restoring hearing through a particular kind of surgery for otosclerosis. And Dad was an early success for hip joint replacement surgery, and later on, for drugs that improve quality of life and comfort for people with emphysema. So, her request to get in on the clinicals makes sense to me. If there's a chance for her to get back her memories and live out the rest of her life with her excellent brain restored, well, we're going to do it.

Interesting? Are you interested, too? Phone: 1-800-438-4380 (Government's Alzheimer's Disease Education and Referral Center to find out about clinical trials and studies in your area), www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials (help to locate studies and answer questions about them) and www.alz.org to access information about the Alzheimer's Association, trials information and more about the disease.

Good luck!!

A spring evening

2007-05-29T10:52:00.000-07:00

I know that the tasks that my father has undertaken are overwhelming to him sometimes. Was it a year ago that he said to me, "I can't stay. I just can't handle this any more." He spoke of another man in town whose wife became wheelchair-bound and was moved to a nursing facility. When he couldn't handle things any more, that man told his wife he wanted a divorce. Dad said thought the woman had Alzheimer's and he thought the man was wrong, but this day Dad wasn't so sure.

I corrected him about what was wrong with the man's wife, Multiple Sclerosis, not Alzheimer's. And I reminded him that wedding vows are about sickness and health til death. I don't have much respect for that man now. If he thought the MS was inconvenient for him, how did he think his wife felt? Nobody gave her a choice. She didn't get to say "Sure, that's what I want." She doesn't have the option of getting up and walking away. She is a prisoner in that wheelchair through no choice of her own. And HE wanted a divorce? Sorry. I shouldn't be judging anyone. But I don't understand how he could abandon her that way. The message that I got was, "I love you as long as you can walk and talk and make love and cook for me and clean for me and take care of me. but I won't love you any more when you can't do anything for yourself any more because I just can't take it."

Dad decided to stay when I was finished. "Mom always stood beside you no matter what."

But the burden is getting greater for him as Mom's condition progresses. And he is growing more frail himself. And my brother said, "You can't put your life on hold to take care of Mom and Dad," and I am thinking, "Someone has to. What other options are there?"

Summer is here. This is the last week of school. There are Little League baseball games to attend. A college student to help get everything set for her to go to live on the campus in the fall. Stories and articles to write. Parents to spend days with to help them enjoy quality of life for the rest of their days.

My husband couldn't keep up with the rapid fire thoughts that my mouth couldn't even keep up with. He said, "I'm starting to worry about you." The remark made me angry. "You don't have to worry about me," I answered. But further down the street I said, "Yes, you do! Maybe you SHOULD be worrying about me." I listed a ton of things I'm responsible for and how little help I get with things that my family could do to help me cover all of my bases. And I was amazed for the rest of the day as he made efforts to be concerned about me, to help me. Oh, that he would do that every day.

I don't know why...

2007-05-25T05:41:00.000-07:00

Dad called. Mom had a lump on the left side of her head, just behind her ear. She thought she was getting another one on the other side. He'd been trying to get through to the doctor's office, but kept getting a redial message. I called and set up an appointment for 2:45. "I'll meet you there," I told him.

I don't know how they got past me. I was sitting in the parking lot waiting...and writing. That explains how I missed them. When I open that notebook and begin to write I lose sight of everything else. I get lost in my work. I looked up and saw the car. Doggone it! I hurried inside.

I peeked over the counter and asked, "OK. What did you do with my mother?"

"Probably the room at the end of the hall." Kelly laughed and pointed.

"Thanks." A good rapport with the staff at the doctor's office is important. I can think of times when I was so frazzled by so much responsibility--job outside the home, family to take care of, endless chore lists for a large family--there was so much that one little wrench thrown into the works could topple me. This humorous moment was a welcome one.

"Ah-ha! You thought you could slip past me, huh?" I greeted Mom, Dad and Gina, the nurse.

When Gina had finished with the statistical data--blood pressure, pulse, temperature, etc.--she left the three of us alone. Mom looked up at me. I could plainly see she was glad to see me. A slight pang of guilt struck me. I'm still spreading myself thin trying to take care of the people I love. Just because the youngest are now 20 doesn't mean that my life isn't busy. I keep asking myself how I had time to do everything I do and still work outside the home a minimum of 40 hours a week!

Mom said, "I don't understand why I got Alzheimer's."

I looked back at her and answered quietly, "I don't know, either, Mom." I didn't add how difficult it is to see her so frail. She always was so sharp. I keep saying that! I need to be there more. I need to go up and walk with her every day. But there are so many other things I'm trying to do. So many other places I need to be also. I'm trying to get those things taken care of while I can...but my mother needs me, too. She is dependent on her family to get her out of the house. She says she can still drive, but we all know that her driving days are over. And I'm thinking that it's time to remove the Internet from her computer, to save the money that she's paying for the service.

But though I should be there for her, I became overwhelmed when I fell so short. And I stopped going up to their house all the time. That was a stark difference from earlier on when Mom didn't want me to be there all the time because she was perfectly able to take care of herself, she said. In retrospect, I thought when the diagnosis was made that meant I needed to be on top of everything right then. But the process has been a gradual thing, a subtle thing. But when your brain is tired, or you are too close to the situation, it's hard to distinguish where the lines are and when you've crossed over them.

And I think about Dad...how he's taking so much of the responsibility for Mom's care...how they ask for so little.

But my brother told me I can't put my life on hold for our parents. But someone has to keep an eye on them. Someone has to be on the inside to understand what is going on and get help for them when they need it. They have to have someone they can trust. And they don't have friends. I tried to talk Mom into going to Senior Citizens but she wouldn't go. I tried to talk them into going to the Elderly Nutrition site to have dinner with other senior citizens, but they won't go.

Several months ago I was visiting. We were talking. Mom said, "I think God is mad at me."

"Why?" I was puzzled by that concept. Why would God be mad at my mother? This woman who has done the best she could with what she had...often not enough to work with. This woman who had been deaf for a number of years--never heard her babies cry...she felt us cry...but never gave up on God. She always knew when the time was right he would heal her ears. And he did. This woman who, when her sister accused her of not executing their mother's estate fairly, still executied it fairly, evenly divided everything so all five got an equal share. This woman who has always done the best she knew how...Why would God be angry with her?

"I haven't gone to his house. It says in the Bible that we're supposed to go to God's house and I haven't for a long time."

The idea puzzled me since I learned ages ago that each of us is a temple of God. He lives within us, so we are in him and he in us all the time. The church building isn't anything but a meeting place for those who believe the same.

"I don't think that's right, Mom. I don't know how God feels about you, but my best guess is that he's not mad at you. But if you want to go to church, you can go. I'll even stop and pick you up if you want me to."

She hasn't gone yet. Maybe it's time for me to call Saturday night to remind them of church. Then call them Sunday morning when I get up so they can get ready, and then leave early enough that I can go to their house and walk them to church. That will require my being less selfish and self-centered in the mornings.

I treasure my mornings at the computer. The window is in front of me, behind my desk so I can see the world as I work...the trees on the hillside across the creek, separated from me by all of the houses and garages between here and the Middle Fork of Little Beaver Creek. And when I'm writing I lose all track of time and place. I get lost in my work because I enjoy it so much. And it has worth. And it completes me, something my husband doesn't seem to grasp. something that hurts him somehow.

"I don't know why I got Alzheimer's," Mom said. Maybe it was God's way of giving her family notice that we need to be a family again instead of letting time and space get between us. We don't know each other any more. But this event in our matriarch's life is bringing us back to center. But how do I explain that to her? How do I explain that to anyone? Maybe I should just accept it as a gift and not say anything...just enjoy the nurturing and be a nurturer. And when will everyone accept that this is more important than dollars and cents?

Am I even making sense?

I can still drive

2007-05-14T10:07:00.000-07:00

Uh, no, Mom. You can't. You had that stroke and still have trouble with your leg.

But I still know my way around.

But your reaction time is much slower than it used to be and there are a lot of crazy drivers out there.

Silence. Crochet hook working.

Guilt. Sadness.

But in a few minutes we've moved on to something else. And I know it's OK. And when I leave her house she will still say, "I love you, honey, and I wouldn't trade you for anything."

A couple of weeks ago she said to me, "Did you say you have a grandbaby to rock?"

I didn't, but I do have a grandbaby to rock. So, she gave me an afghan that she'd crocheted in white, pink and blue. I brought it home, treasuring its simplicity because at least Mom is still crocheting!

A couple of nights ago she said, "Do you have a grandbaby who needs an 'afigan'?" She gave me another blanket, this one white, red and blue to give to my daughter whose baby is five months old.

I was heartened when I went into her house that evening. She was crocheting with size 30 crochet thread. "I haven't worked with this for awhile," she said with a smile. And every time she says, "Your dad doesn't like me to crochet," I tell her, "It's OK. I told him it's OK for you to crochet as much as you want."

The morning was beautiful this morning, but the clouds have rolled in this afternoon. I don't know if it will rain. But I know that we still have Mom, for the most part. And I'm going to take these articles I printed from the Internet so she and Dad can read them. There are strides being met and my prayers are that the answers will come soon...for our family and everyone else's who is struggling with memory impairment.

The most difficult I've ever done

2007-05-01T13:56:00.000-07:00

Mom says that a lot these days. And has for awhile. I've told her all along that as long as she's crocheting I'm not going to worry. But how sad it is for this heart of mine to see her now crocheting granny squares. Simple granny squares when she used to crochet advanced patterns!

I did some accidental research on the Internet today.

Reversing Alzheimer's memory loss may be possible
http://news.yahoo.com/s/nm/20070430/hl_nm/alzheimers_memory_dc_4

Many Alzheimer's caregivers seek help in God
http://www.latimes.com/news/local/la-me-alzheimer14mar14,1,3165400.story?coll=la-headlines-california

Open the door to curing Alzheimer's
http://www.washingtonpost.com/wp-dyn/content/article/2006/06/26/AR2006062600978.html

Paying for Alzheimer's
http://www.washtimes.com/op-ed/20050706-094909-5349r.htm

So where are we headed? One day at a time.

Live day to day

2007-04-24T12:45:00.000-07:00

One thing I've learned from repetition: Live each day and let tomorrow take care of itself because yesterday is done and tomorrow never comes. It's always today. And there are a lot of reasons to be aware of our surroundings: the people who populate our lives, the things that truly are important to us rather than the things we've been THINKING are important to us and those things that bring peace, joy and tranquility to us.

Mom said, "I don't know why I'm still here." I know she didn't mean to make any of us feel guilty. And I was the only one who was there, so my brothers aren't aware of any guilt trips. I don't get up to Mom and Dad's house as often as I should/could/would. Is it because my youngest brother said, "You can't put your life on hold for Mom and Dad"? Well, maybe I can't but someone has to be there for them. Who else is going to do what needs done?

"We still need you, Mom," I said. But she was probably thinking, "Then why aren't any of you around so I can feel needed?"

"God isn't done with you here, yet," I added. "When He's ready..."

When I hugged her before I left her house, she said, "I love you, honey. I wouldn't trade you for anything."

"I know," I said. "You tell me that all the time. It's so good to be loved."

And I vow I'll get up to see them more, but life intervenes and I'm feeling like I'm scattered all over the place. At my age I'm feeling like I need to be focused on my writing because it's now or never. In 20 years I could be the next version of the woman in front of me...the woman I have loved, admired and respected every day of my life.

The next day (yesterday) I had to take her to a doctor appointment. She held onto the corner of the house where the steps lead from the porch to the sidewalk. She's changed from the confident woman she used to be. As much as I've been looking to simplify my life, the simplicity that is pooling around her was not what I had in mind. She made her way to the car, and I was stricken by the thought that she is becoming frail. The time was when she would scurry to my car and we'd take off for shopping excursions or work on quilts together or take a trip together.

When we walked up the ramp to the doctor's appointment she said, "I'm getting so frail." So, she realizes that. I felt a tug at my heart. Inside the exam room while we waited for Dr. Getzinger she said, "I want another dog but they won't let me have one."

We've talked about that time and time again. "I don't think you can take care of a dog."

"I took care of Josh. He was no trouble."

"You got Josh before the Alzheimer's, Mom. There's a lot of work to taking care of and training a puppy. I just don't think it's a good idea. You have trouble taking care of yourself."

"I can take care of a dog."

Ten minutes ago she was talking about how frail she's getting.

Dad's having trouble with his COPD. He told her the way things are going, she won't have to worry about him much longer. She still knows that Dad is the only reason she is still living at home, the home she's lived in for 50 years. She knows if he dies first, she will have to come and live with me. Dad is working so hard to keep himself going so they can both live out their lives independently.

I remember a couple of years ago when I went to Florida with Maureen. There was a story in the newspaper there of a firecall. Of the firefighters who needed to speak with a counselor when they watched the elderly couple inside that vehicle burn up because the driver had locked the car, set it on fire and refused to unlock the doors.

It sounded to me like the man had driven his wife to the beach so they could watch the tide. Maybe it was their favorite place, someplace that they had shared many times. Maybe the lost look in her eyes was the Alzheimer's at full-blown pitch. Maybe he worried what would happen to her if he died first and he just couldn't handle that thought.

We all need to live just for today. Because today is all that we really have. And every today after this one.

Spring...and thoughts turn to...

2007-04-21T05:33:00.000-07:00

Joyce sent me an e-mail: "I saw this and thought of you." "This" was the submission guidelines for the Cup of Comfort anthology about Alzheimer's. I decided on the spot that I need to write about it, especially when I began to write my response to her. Yes. I have to submit, even if it isn't accepted. I'm not sure what it pays, but a lot of folks will probably buy that anthology because there is so much AD.

Late March saw a wonderful couple of weeks of nice, warm weather. I am sure I'm not the only one who knew it was too early to expect that weather to stay. And, it didn't. But yesterday the thermometer rose to the low 70s again after three weeks or so of wind and snow and rain. And the same forecast of warm weather holds through the entire weekend and into the the new week. I'll take it!!!

My home office is a small room just off of the master bedroom. There is a window behind my desk that allows the light to wash this room. I can see the broad expanse that is the sky. It's blue and cloudless this morning. And the sun, rising in the east, is casting it's welcome warmth and brightness against the homes and garages and gardens. It's a feel good kind of day. One of those days when I feel carefree and energetic...and hope that I shouldn't be looking over my shoulder for another shoe to drop. Seems like a day that I should get Mom outdoors for a walk, and putter around in the flower beds.

I love you, Honey

2007-04-17T18:24:00.000-07:00

Every time I hug my mom she says, "I love you, Honey. I wouldn't trade you for anything."

Sometimes I wonder what is going through her mind when I walk out the door to return to my home. Her diagnosis was five years ago. But she remembers things that I didn't expect her to remember at this stage of the game. I attribute that to the medication she takes, Namenda. It may not work for everyone, but it has slowed down the progression of the AD.

Guilt manages to overtake me at moments like this when I know I was busy taking care of things at my house, writing that article I had to get finished for my employer, the article for my senior living web site, and the general daily tasks that a wife and mother has to do. I still feel like I should be popping in daily to make sure everything is OK.

"You can't be here all the time," Dad says. "You have your own life to live."

My youngest brother says, "You can't put your life on hold to take care of Mom and Dad." But if I don't, who will take care of things? Who will make sure that the medications are dispensed properly? Who will see that they are OK, getting their bills paid on time, that they eat nutritionally sound meals?

I've determined that I should just take one day at a time. Sometimes one minute at a time. That I should just do what I can each day and forgive myself for my shortcomings. If I'm doing the best that I can, the best I know how, what more is there?

I love you, Mom. I wouldn't trade you, either. You've always been there when I needed you. How can I do anything less for you?

When the day looks gray

2007-04-04T08:23:00.000-07:00

Yesterday the world was filled with color and thermometers soared to 80 degrees. Hearts were light and all was well with the world. Today...where did all of the color go?

That is a metaphor. I recall the wonderful, warm memories of my youth and motherhood...and daughterhood...womanhood. I look from this special place to my mother and the direction my life is still taking. I look from this special place to my daughters and the direction each of their lives is taking. I've decided to just live for each day. Have some long-range goals and hold onto the dreams, but just take one day at a time. I want to live each day to the fullest, just like the song...Live Like You Were Dyin'.

Mom cried when I visited her early this week. She hates what is happening to her. She remembers her doctor saying to her, "You used to have such a good brain." She has fixated on that statement and it haunts her. And I think, as smart as her doctor is, sometimes he says stupid things that would be better left unspoken.

She still crochets. I told her long ago, as long as she is crocheting I don't have to worry about her. Dad has often complained about the hours she spends crocheting. And I've told him countless times to let her do it. If it helps to keep her brain alive, it is a good thing. A year ago she was still crocheting complicated advanced patterns. She makes attempts now, but spends hours tearing out and crocheting again to complete the projects. Now she is working on a design of her own made with the simple granny square.

What I know is that she and Dad are not going to be able to live alone for much longer. I think it's time for DH and I to consider moving in with them so they can stay in their home. Dad is trying valiantly to handle everything, but he isn't getting any younger, either. He needs some help.

A couple of friends keep telling me I shouldn't have to take care of my parents. I don't understand. My parents struggled through difficult financial times to take care of us. My mother lost sleep at night when we were sick. My parents have always been there for me when I needed them. Do I have a lesser obligation than they did? How many times did Mom say, "Let me help you now because the day will come when I'll need you to help me"? And don't I want my children to have the same compassion for me? Then I owe compassion to these two special people who brought me into this world, have loved me unselfishly for so long.

It's a gray day in Northeast Ohio. If the sunshine doesn't return on its own, I may have to get out my paint and brushes and put color back into the world around me.

There's a metaphor in that statement, too.

Rainy daze

2007-03-23T08:40:00.000-07:00

It's amazing how there is no color in the world when clouds obscure the sun. One can board a jet in a colorless world, then take off through the clouds to sunlight above them. The sun is always there. We just don't always see it.

It's a rainy day in no, not Georgia. Well, it may be raining in Georgia, but it's also a rainy day in Northeast Ohio, at least in our little town, the heart of the county. I heard birdsong in mid-to-late February. I recognized the robin's song as soon as I heard it and it gave me hope that spring would not be long in arriving. And I've been pretty ticked off at Punxy Phil. He lied!

I had to be out running a couple of days ago, so I stopped to visit my parents for a few...I'm never sure if I'll be there for a few minutes or a few hours. I hate to just drop in, visit a few minutes, and be on my way again. But sometimes that's how it is. I think even the few minutes are good for my parents and good for me.

We were talking. I looked at Dad and said, "I'm a workaholic!"

He looked back at me. "I know what you're saying."

I used to give him a terrible time about always working. It was like he was driven to work as much as he could to make as much money as he could. He didn't do bad for someone with only an 8th grade education. He was a crane operator for a tire manufacturing concern, NRM Corporation, for many years. When I started working in the shipping/receiving department in 1972, he put a bid in for the truck driver position and got it. It was nothing for him to work 7 a.m. to 10 or 11 at night. We never knew if he was going to be home for supper or not. So, I gave him some static. Not a lot. I was afraid to say much. We'll just say I had a healthy respect for my parents and rarely talked back. I just knew Mom wouldn't tolerate mouthy disrespect. And I loved her too much to want to be a disappointment to her.

So, yes, when I admitted that I'm a workaholic, I wasn't surprised that Dad knew exactly what I was talking about. And maybe it told him that I understood exactly what he was talking about the day I said, "I am going to quit my job and stay home full time."

"What are you going to do with all of your time?" he asked. "Are you going to be able to keep busy?"

Workaholics, from my POV (that's writerly for 'point of view'), are people who are so driven to take care of responsibilities, particularly the financial ones, that they don't know how to relax, take a breath and actually breathe, to stop and smell the roses or to sit down and enjoy a movie, a tv show, a cookout with the family, an afternoon sitting lakeside while the spouse tosses a line in the water.

Mom piped up, "You are a workaholic."

I was surprised. And I have to chuckle at that. My parents keep telling me they don't want to bother me because I'm so busy. And I keep telling them that I'll always have busy work because I can't sit still without something to do--crocheting, reading, and especially writing. But I can always set my busywork aside for things that are more important, like talking to my children, going to a hamburger joint and a movie with a grandchild, visiting with my parents, helping my parents, and anything else I want to do.

Mom...I'm so blessed to have her. Our family is so blessed that the AD is progressing so slowly. It's five years since her heart-breaking diagnosis. And nearly three years since the doctor prescribed Namenda. I don't know what's in the Namenda, but it's a miracle for my mom. She keeps saying, "My brain is so dead," and it's true that she isn't as sharp-minded as she once was. Sometimes what she says isn't exactly right...can be totally wrong...but she's still Mom and she still has wisdom and knowledge that I value. And sometimes she is still right on the money. The difficulty is in being able to tell which is which.

When I pray before I go to sleep, I ask God to take care of her. I ask Him not to let the AD totally take control of her. And I trust Him to take care of her, not to let the AD take total control of her. That she'll always recognize us. And always know how much we love her.

Yeah. It's a rainy day in Northeast Ohio. And rainy days always turn my thoughts to philosophy of life. Deep thinking. But if the sun doesn't come back out soon I'm gonna have to turn on all the lights and simulate sunshine.

Another over the hump day

2007-03-21T06:05:00.000-07:00

The over-the-hump days come so rapidly these days. The weeks are flying. It's March 21, the first day of spring. The first quarter of 2007 is nearly done.

I remember when I was a child the weeks seemed to drag out for so impossibly long times. But those days probably ticked off as rapidly for older folks then as they do for me now. Must be because I'm so "busy."

Mom and Dad say they don't call me because they know I'm "busy." I keep telling them I'll always have "busy" work to keep my hands "busy." But the thing about busy work is that it can be set aside when I have something important to do...like helping my parents when they need me. They don't call very often. And I'm going to start inviting them to dinner at our house at least once a week. They came for birthday cake last week when the twins turned 20. My babies. Who grew up way too fast. In fact, I can't figure out how time flew so quickly.

Anyway, my parents came for birthday cake for the girls, and they were so tickled to be here. So I'll have them to dinner a couple of times a week. With warmer weather coming, I want to cook out on the grill. Looks like we'll be able to afford to fill the propane tank for the grill this spring. YES! I think we'll use the patio a lot this year. Hm. We'll need a new picnic table, too.

The days don't drift. They fly by. We need to take advantage of the time we have while we have it because the day will come when time runs out and Mom and Dad will be gone. We won't be able to go back and retrieve it. I don't want to wait until they are gone to appreciate them.

Besides, Mom perks up when she has visits with family. I think that helps her.

Onward with the day.

What do you do?

2007-03-20T16:38:00.000-07:00

When you learn that a loved one, say your mom, has Alzheimer's, what do you do?

First, you cry. It's so hard to think about the person you admire so much is going to slowly slip away from you without dying. The shell will still be there and even if she does say, "When I don't know you any more, don't come to visit. I'll be gone."

Wow. Mom said that to me once. And it was from the heart. Sometimes when she says things I know it's not really what she means. But she meant that one. I don't think I can ever stop going to see her, though. No. My prayers are that God will not let her be completely taken over by Alzheimer's, that He'll let her stay where she is at this moment of the disease's progression until the day she dies. That it will never completely rob us of her.

My brothers wanted to deny that AD had entered the picture. I accepted it pretty quickly because I had to accept it in order to start looking for ways to help her, to slow down the progression, prevent it if I could, but to embrace it and look for answers, to be there for her with knowledge that could help her. There was no time to lose, especially as I looked back and saw all the red flags we had missed early on. They were there...but the changes were so gradual, so subtle. Unnoticeable until we looked back.

My knee-jerk reaction was that I had to step in immediately and take over the handling of Mom and Dad's affairs. It wasn't that I was trying to be controlling and bossy. It was that I wanted to help them. Mom wanted to stay independent, to live in their house until she dies. I thought I had to immediately get to work to make that happen. It took awhile for me to understand that they will ask for help when they need me. They will accept help when I offer it at the times that I can plainly see that they need me.

That's another thing. I have to be so alert to their words, their expressions, the look in Mom's eyes when she doesn't want to admit that she needs help. And when I'm not there all the time, when days pass before I go back to visit, I lose touch and don't know what they need. And they feel like I've abandoned them. I don't know how to take care of things at my home and their home at the same time. I don't know how to be everywhere at once.

Is that why I've taken to hiding away in my office? Away from everyone and everything? Why doesn't anyone understand what I need? If I go to my parents' house, I neglect things that need to be done at my house. If I stay home, I am not around when they need me and they don't want to bother me because I "have so much on your plate." And if someone else needs something from me, I feel that much more stress and guilt because I can't cover all the bases and I have no one willing to take up my slack.

But they don't want to move to my house. And their house isn't big enough for us to move there. Maybe next year when one daughter is living at the college and the other is married and the newlyweds can live here with the dogs and cats and DH and I can live with my parents. I don't know.

What do you do? You take one day at a time. You do the best you can with today. And all the todays after this one.

New week, new day, new blog

2007-03-19T11:18:00.000-07:00

I had a blog about Alzheimer's. I think I deleted it. No, I don't have AD, but my mother does. My objective is not to violate her privacy, but to share with others the AD experience because it's different for everyone. Which is why I deleted the other blog...if I deleted it. I can't find it anywhere.

AD...I remember a sunny day in March several years ago. I remember Mom called me and said her doctor wanted to talk to me. He wanted to talk to me because he had diagnosed Mom with Alzheimer's. I remember being stunned. Oh, it didn't affect me too much at first. It's so easy to think, "She just misunderstood something he said. It can't happen to my mom." But later, every time I sat down at my computer to write, I would freeze, think about my mother's diagnosis and the tears would fall.

My siblings didn't believe it. They were in denial for a LONG time. One still insisted at Thanksgiving 2006, "I don't believe Mom has Alzheimer's." The other said, "Take a good look at her. You're talking about things she's saying to you. Is that normal for her?" "No." "That's the Alzheimer's."

It breaks my heart to see someone I grew up admiring, respecting...she was so sharp-minded. Nobody could pull anything on her. She was always at the top of her game. Now, even she will say, "I hate my brain. It doesn't work right. It's dying. I can see that it is."

Well, I don't know if I can share everything here. But I will share what I can without violating privacy of others. What I know for sure is that I don't want my mother to slip away from us. Hummingbird, don't fly away!