Hummingbird has departed

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.
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Another jump?

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

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

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

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

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

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.