"How much does this cost you?" That was the question Mother had today. She was lying in bed and chewing on her skin. She grabbed the loose skin at her wrist between her teeth and pulled it out. She repeated both the question and the chewing. It struck me as such a typical Alzheimer's moment.
She had been lying there thinking in some manner about the cost of her care. She has no sense of money anymore. She will tell you that a soft drink costs one hundred dollars or that a car costs twenty-five dollars. It is all jumbled in her mind, yet she had a moment of awareness that her care in the home cost money. She was worried. I told her she had enough money and not to worry. She smiled and kept gnawing away at her arm.
I put the small terrycloth wrist band on her arm so that she could chew that. She told me it didn't taste good. She pulled if off and went back to chewing on her arm. (Last week I had to throw away a shirt that had a hole in the shoulder from her chewing.)
"My inheritance will pay for this." Inheritance? There is no inheritance. And truth be told, she doesn't have enough money for her care. But I cannot tell her. It would only worry her more, and the chewing would increase. She is just lucid enough today to think about money and care, but not lucid enough to know that there is no money or that she is chewing away her clothing and her arm.
Last week she grabbed my hand and pleaded, "please take care of me." Of course I will. I do in the best way I know how. There is no road map to follow, so I do the best I can from day to day. I tell her not to worry. She will be ok. She doesn't have to worry about the cost. We will take care of her. Somehow. It will work out.
Monday, October 8, 2012
Sunday, September 23, 2012
Faded Memories
Mother's memory is becoming a shadow. She has only lingering glimpses from her past. Like faded wallpaper slowly peeling away from the sure structure of the wall, her memory is peeling away from the structure of her life. She can no longer share the memories large or small from her past. She can only ask questions.
"When I was little, we had popcorn and Pepsi every Sunday evening while we watched TV," I say.
She smiles and sips her Pepsi through the straw because drinking from a can is difficult and says, "Was it good? Did we like it? Was it fun?"
I've stopped saying "do you remember." I just tell her how things were, and she asks questions. I tell her how much she enjoyed popcorn or old movies or working in her garden. Sometimes a light of recognition comes on. Just a faint remembrance - a shadow that flits across her mind. She will nod, but just that quickly the memory is gone.
I visited a museum once where people walked in front of a light that would capture their shadows. They could step away and see their shadow lingering on the wall, but very quickly those shadows faded and nothing was left to say that they or their shadows had existed. Mother has only the shadows of her life left, and those are quickly fading.
"When I was little, we had popcorn and Pepsi every Sunday evening while we watched TV," I say.
She smiles and sips her Pepsi through the straw because drinking from a can is difficult and says, "Was it good? Did we like it? Was it fun?"
I've stopped saying "do you remember." I just tell her how things were, and she asks questions. I tell her how much she enjoyed popcorn or old movies or working in her garden. Sometimes a light of recognition comes on. Just a faint remembrance - a shadow that flits across her mind. She will nod, but just that quickly the memory is gone.
I visited a museum once where people walked in front of a light that would capture their shadows. They could step away and see their shadow lingering on the wall, but very quickly those shadows faded and nothing was left to say that they or their shadows had existed. Mother has only the shadows of her life left, and those are quickly fading.
Tuesday, September 18, 2012
Steal Away
There is a new normal for our visits with Mother. We are learning to tolerate more aberrant behavior as her mind becomes more scrambled and her behavior becomes more unpredictable. It amazes me that her behavior, which I would have found so horrifying a few years ago, has become just a blip on the screen during my visits.
Yesterday was a good day. Mother was up and looking out the window, so I asked if she wanted to go outside. She did! This is the first time in a while that she was willing to go out and get some fresh air. I walked with her arm and arm down the sidewalk through the fenced area to the bench where we could see trees and sky. As we walked, she turned to me and said, "We are a newlywed couple just strolling along." When I walk with her I always have her grab my arm because she is somewhat unsteady on her feet, but yesterday she was hustling along as fast as her little shuffle could take her. We sat on the bench for a bit and looked at the thunderheads building up. She was enthralled with the big, bright clouds and shouted and pointed. Then just as suddenly, she said, "Can I look down your dress?" She pulled at my neckline. I told her no, that it wasn't polite. She turned away and asked again and pulled at my clothing. The third time, she asked and said, "Please, please, please, please, please!" Not only is that bizarre behavior, but it was something I now take in stride because I know she doesn't know what she is saying. I distracted her with the clouds. She said, " I will just steal away." We sang Steal Away to Jesus her voice soft and sweet as she watched my mouth to see what the words were.
A visit so horrifying and so sweet at the same time. I watched her look at the clouds so innocently, yet I cringed at her pulling at my clothing like some old letch. How can her mind be both? How can she jump so quickly from wanting to look down my dress to singing Steal Away to Jesus? Maybe more horrifying is that that behavior is possible for any of us when disease strips away our inhibitions. We cringe not just because the behavior is so strange, but deep down we must admit that it is inherent in us all. Mother, any person with Alzheimer's, shows us what our primitive selves are like. The hopeful part is that no matter how base and ugly some of what we do is, we still have some part that can steal away and sing.
Yesterday was a good day. Mother was up and looking out the window, so I asked if she wanted to go outside. She did! This is the first time in a while that she was willing to go out and get some fresh air. I walked with her arm and arm down the sidewalk through the fenced area to the bench where we could see trees and sky. As we walked, she turned to me and said, "We are a newlywed couple just strolling along." When I walk with her I always have her grab my arm because she is somewhat unsteady on her feet, but yesterday she was hustling along as fast as her little shuffle could take her. We sat on the bench for a bit and looked at the thunderheads building up. She was enthralled with the big, bright clouds and shouted and pointed. Then just as suddenly, she said, "Can I look down your dress?" She pulled at my neckline. I told her no, that it wasn't polite. She turned away and asked again and pulled at my clothing. The third time, she asked and said, "Please, please, please, please, please!" Not only is that bizarre behavior, but it was something I now take in stride because I know she doesn't know what she is saying. I distracted her with the clouds. She said, " I will just steal away." We sang Steal Away to Jesus her voice soft and sweet as she watched my mouth to see what the words were.
A visit so horrifying and so sweet at the same time. I watched her look at the clouds so innocently, yet I cringed at her pulling at my clothing like some old letch. How can her mind be both? How can she jump so quickly from wanting to look down my dress to singing Steal Away to Jesus? Maybe more horrifying is that that behavior is possible for any of us when disease strips away our inhibitions. We cringe not just because the behavior is so strange, but deep down we must admit that it is inherent in us all. Mother, any person with Alzheimer's, shows us what our primitive selves are like. The hopeful part is that no matter how base and ugly some of what we do is, we still have some part that can steal away and sing.
Wednesday, September 12, 2012
Bit by Bit
The thing one must understand about Alzheimer's is that it is a terminal disease. That sounds like a no brainer, yet the disease steals Mother in such tiny bits that sometimes the the major change is upon me before I realize it. She has ups and downs, good weeks and bad weeks, days of fear and days of joy, but I realize that my definition of a good day has changed.
It used to be that a good day was one where we could have an actual conversation, be it ever so brief. Now a good day is a day when she smiles. It used to be that a good day was getting her teeth flossed and brushed every day because she wanted to have a clean mouth. Now a good day is getting a few of her teeth flossed once or twice a week because she fights the whole process.
So my sisters and I have to make choices. End of life choices, although the end of life might be years away. Many families have to make gut wrenching choices about care and treatment, but for many that process takes place over a few hours or days or weeks. With Alzheimer's, we make those choices over and over and bit by bit for years. We have to make a series of gut wrenching decisions, and each one seems to be worse than the previous one.
First taking the car keys way. That was difficult, but looking back, it was a piece of cake. Getting Mother to the home was traumatic for everyone because she went kicking and screaming - literally kicking and screaming. That was just the beginning. Now we face the difficult choices of stopping or changing some of her treatment, but that too will come bit by bit and with each decision comes gut wrenching uncertainty. Even though we consult with the health professionals, we wonder if we are making the best decisions for Mother. It is difficult. We must do it; we just have to do it over and over and bit by bit.
It used to be that a good day was one where we could have an actual conversation, be it ever so brief. Now a good day is a day when she smiles. It used to be that a good day was getting her teeth flossed and brushed every day because she wanted to have a clean mouth. Now a good day is getting a few of her teeth flossed once or twice a week because she fights the whole process.
So my sisters and I have to make choices. End of life choices, although the end of life might be years away. Many families have to make gut wrenching choices about care and treatment, but for many that process takes place over a few hours or days or weeks. With Alzheimer's, we make those choices over and over and bit by bit for years. We have to make a series of gut wrenching decisions, and each one seems to be worse than the previous one.
First taking the car keys way. That was difficult, but looking back, it was a piece of cake. Getting Mother to the home was traumatic for everyone because she went kicking and screaming - literally kicking and screaming. That was just the beginning. Now we face the difficult choices of stopping or changing some of her treatment, but that too will come bit by bit and with each decision comes gut wrenching uncertainty. Even though we consult with the health professionals, we wonder if we are making the best decisions for Mother. It is difficult. We must do it; we just have to do it over and over and bit by bit.
Friday, August 31, 2012
Remebering Too Much
Sometimes stimulating Mother's memory is worse than watching her forget. This week I found a coffee table book with beautiful pictures of our part of the country. It was filled with photos of the places close to her home and scenery from the region that were stunningly beautiful. I thought she would enjoy the book, so I took it with me when I visited.
Mother was in a quiet mood and just wanted to lie on her bed, so I sat beside her and in bedtime story fashion I held the book while we looked at the pictures and talked about the places. She got excited about some of the scenes and even seemed to remember some of the places, or at least she reacted to the names when I told her what the photo was. Then what seemed like a pleasant experience just broke my heart.
She started crying and howling as she does when she is upset. "I'm getting homesick," she said. I closed the book, but it was too late. The beautiful photos had caused her pain, and worst of all it caused her emotional pain. I moved the book out of sight and diverted her attention to her new wind chimes. Like a small child she was easily distracted, but the experience has haunted me.
Some memories are still with her, and she is still aware enough to know that she can't participate in those places or times again. It is difficult to know where to go with helping her remember pleasant times, but I have found one line I will not cross again. It is okay to remember briefly a time and place from the past, but immersion in it is only painful for her. I can remember, and I will remember her cries of homesickness for a long time.
Mother was in a quiet mood and just wanted to lie on her bed, so I sat beside her and in bedtime story fashion I held the book while we looked at the pictures and talked about the places. She got excited about some of the scenes and even seemed to remember some of the places, or at least she reacted to the names when I told her what the photo was. Then what seemed like a pleasant experience just broke my heart.
She started crying and howling as she does when she is upset. "I'm getting homesick," she said. I closed the book, but it was too late. The beautiful photos had caused her pain, and worst of all it caused her emotional pain. I moved the book out of sight and diverted her attention to her new wind chimes. Like a small child she was easily distracted, but the experience has haunted me.
Some memories are still with her, and she is still aware enough to know that she can't participate in those places or times again. It is difficult to know where to go with helping her remember pleasant times, but I have found one line I will not cross again. It is okay to remember briefly a time and place from the past, but immersion in it is only painful for her. I can remember, and I will remember her cries of homesickness for a long time.
Sunday, August 26, 2012
Happy Birthday to Me
Mother just had a birthday. We had talked about it for days, but when the day arrived, she didn't remember that it was her birthday. We arrived with cupcakes, presents and some of the family to celebrate with her, but her room was empty. I went looking for her and found her sleeping in another room in someone else's bed. But she roused, and I told her it was her birthday and there was a party for her in her room. I sang Happy Birthday to her as we went down the hall. When we arrived at her room she announced, "Happy Birthday to me, me, me, me, me, me, me" while beating her chest and smiling. We sang again and ate chocolate cupcakes. Like a small child, she had frosting all over her face and hands and thoroughly enjoyed each bite. We called my sisters so that she could talk to them, and then she opened her present. By then, she was tired, but happy. I know that by the time we were in the parking lot she had probably forgotten all of it, but she was so happy. When we gave her her package she said, "My family is my best present." That is why I try to visit almost everyday. She forgets so easily, but she still remembers her that her family is important to her, and I want to her have those moments as often as possible.
Monday, August 6, 2012
Piece of Mind
The brain, the walnut shaped organ that allows us to be, is a mystery. I try to read what I can about brain function, growth, learning, etc., but no matter how much I think I might understand, how the brain actually works in any individual remains a mystery to me. Mother's brain, ravaged by dementia, is even more of a mystery than the brain of my thirteen year old grandson. My grandson's teenage brain at least follows a pattern that is recognizable; Mother's brain snaps and flashes in ways that leaves me grasping for some kind of pattern or for some kind of sense.
Yesterday, Mother was listening to a recording of my youngest grandchild singing. He had learned a song at Bible school and sang it so sweetly that I recorded it and played it for Mother. Her face lit up as she listened. I told her who was singing and what the song was. It was an old song, and she was familiar with it. She mouthed the words as she listened. Then she looked up and said, "And he is only six years old!" How did she remember that? He had just had a birthday, and most of the time she doesn't know who he is or who his parents are. We had told her about his birthday, but it made no impact- or so we thought. Somehow, that tiny piece of information stuck in her mind and for that moment, she could remember.
I told her she was right and reminder her that she had a birthday coming up soon herself. "When is your birthday?" She gave me a date. It was wrong. She has no idea when she was born or how old she is. Yet for that one split second she could remember that her great-grandson was six. Her mind is in pieces, and we never know what piece will be working. Neither does she. How terrifying to live with only random pieces, yet we keep feeding her broken mind information. Who knows what she might remember. It is a mystery.
Yesterday, Mother was listening to a recording of my youngest grandchild singing. He had learned a song at Bible school and sang it so sweetly that I recorded it and played it for Mother. Her face lit up as she listened. I told her who was singing and what the song was. It was an old song, and she was familiar with it. She mouthed the words as she listened. Then she looked up and said, "And he is only six years old!" How did she remember that? He had just had a birthday, and most of the time she doesn't know who he is or who his parents are. We had told her about his birthday, but it made no impact- or so we thought. Somehow, that tiny piece of information stuck in her mind and for that moment, she could remember.
I told her she was right and reminder her that she had a birthday coming up soon herself. "When is your birthday?" She gave me a date. It was wrong. She has no idea when she was born or how old she is. Yet for that one split second she could remember that her great-grandson was six. Her mind is in pieces, and we never know what piece will be working. Neither does she. How terrifying to live with only random pieces, yet we keep feeding her broken mind information. Who knows what she might remember. It is a mystery.
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