I wish I could go to my home

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?

(c) 2009 Cathy Thomas Brownfield

Why can't I go home?

“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

"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

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

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

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

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

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

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

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

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

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.