Sometimes a decision about care for Mother almost overcomes me. Right now we are struggling with her oral hygiene. Basically, her teeth are rotting out of her mouth. She has been in assisted living or in the nursing home for almost two and a half years, and now we are seeing her mental decline manifested in a new way. She tries to brush her teeth, the staff try to help her and we try to help too. When she will let us, we floss her teeth and help her brush. I put on the gloves, trying to not get bitten, and I am as gentle as I can be. The problem is that she is constantly eating something sweet, and the brushing and flossing is just not adequate. Every dental appointment reveals more cavities. This time there was even a crown missing - apparently she swallowed it. Teeth will have to be pulled.
The dilemma comes for us when once again we have to decide what it best for her quality of life. How much money do we put into dental work that may be in a tooth that has to be pulled in a few months? How will this affect her diet and one of the few pleasures she has - eating? Can she tolerate the dental work? Just going to the dentist for a cleaning is a major event. It takes two people to get her there, and we have to hold her hand and reassure her. She becomes fearful and exhausted.
Sometimes I wonder if I am up to this task. A friend said to me today, concerning her parents, that she thought she knew about these things, but she is discovering that she knows nothing. I empathize with her. I sometimes feel that I don't know what to do or how to do it. Watching a parent die of Alzheimer's and dealing with the terrible, slow decline is horrifying. At each step there is one more element of decay to deal with. I am helpless before it. I just keep taking one step at a time and try to keep moving in what I think is forward motion.
Sunday, November 20, 2011
Monday, November 14, 2011
Going Home
Without a doubt the hardest thing we have had to do so far is making the decision to move Mother to assisted living and then to the nursing home. Leaving the home she loved was absolutely wrenching for her and for all of the family. Her home was more than just a house and a piece of land. It was and is who she is. Her identity is rooted in that soil, distilled into that water. Her spirit was fed by every tree and animal and bird in the woods and meadows. She walked the woods and fished the pond. She chopped the wood and cleared special areas for sitting and communing with nature. She planted her garden and made a home made swimming pool out of boards and black plastic that the grandchildren thought was better than any pool they had ever seen. She taught her grandchildren about God and about nature in the woods. She roasted pork loins over an open fire pit she built herself. At 70, she was on the house putting on new shingles. She never wanted to be gone from her home. She even wrote a song about her home in the woods. Sometimes we thought she might love that place almost more than she loved people. It has been everything to her.
Now, she often doesn't remember it at all. If you ask her where her home is, she names her childhood home. She can go months without talking about it. But when she does, I once again experience the ache and the gut wrenching feeling that I have somehow betrayed her. Yesterday when we visited she grabbed our hands and asked to go home. She said she had to get out of that nursing home and go home. I told her I really wished I could take her home, but I just couldn't. Then she held my hand, leaned forward and said. " Pleeeeeeeease. Oh pleeeeeeease. I am so homesick." My heart shattered into a thousand sharp fragments. My heart was broken, but I heard myself saying, "It is too late. We can't go. I wish I could take you, but I can't." The look on her face pierced me through. I comforted her with hugs and told her that my sister looked after the place. I assured her that we put the light bulb in the well house, swept the porch, and cleaned the house. She smiled and said okay. That was it. The thought of home was gone, and today she was happy. But my heart still aches today. I can't get the look on her face as she pleaded with me out of my mind. I would give anything to be able to restore her to her home and her mind and her life. It is a bitter heart ache, and I mourn for her loss and for the pain we share together.
Now, she often doesn't remember it at all. If you ask her where her home is, she names her childhood home. She can go months without talking about it. But when she does, I once again experience the ache and the gut wrenching feeling that I have somehow betrayed her. Yesterday when we visited she grabbed our hands and asked to go home. She said she had to get out of that nursing home and go home. I told her I really wished I could take her home, but I just couldn't. Then she held my hand, leaned forward and said. " Pleeeeeeeease. Oh pleeeeeeease. I am so homesick." My heart shattered into a thousand sharp fragments. My heart was broken, but I heard myself saying, "It is too late. We can't go. I wish I could take you, but I can't." The look on her face pierced me through. I comforted her with hugs and told her that my sister looked after the place. I assured her that we put the light bulb in the well house, swept the porch, and cleaned the house. She smiled and said okay. That was it. The thought of home was gone, and today she was happy. But my heart still aches today. I can't get the look on her face as she pleaded with me out of my mind. I would give anything to be able to restore her to her home and her mind and her life. It is a bitter heart ache, and I mourn for her loss and for the pain we share together.
Monday, November 7, 2011
It Happens
Mother has adjusted fairly well to life in the nursing home. Occasionally she asks about her house, but most of the time she asks where she is. She just can't remember where she lives. And as sad as that is, sometimes these everyday forgetting episodes take a funny turn.
Last week when I visited was one of those days when Mother didn't know where she was or who the people around her were. Her solution to not knowing is to give the people she lives with the identities of people from her past. I think for her it is a comfort to have old friends and long-dead relatives "living" there too in her mind.
One of the residents who wanders constantly was in the sitting area with us. She tried to move furniture and pushed the coffee cart out from the wall and was carrying on a conversation with someone. She approached us and told us to "come on" or we would be late. She then walked across the room and walked directly into the wall! Poor thing! She wasn't hurt, and she came back and sat with us and talked about so-and-so not coming and something about a cash register not working. It was nonsense, but she expected an answer. I replied, "Well sometimes that just happens." She looked at me and yelled, "S- - t happens!" I said, "Yes, it does." She yelled it again, got up and wandered out into the hall. Mother then proceeded to tell me which "family" member she believed the woman to be and said, "She doesn't know anything. She has lost her mind."
Sometimes you just have to laugh. I think maybe the woman spoke for everyone who has Alzheimer's that day. It happens.
Last week when I visited was one of those days when Mother didn't know where she was or who the people around her were. Her solution to not knowing is to give the people she lives with the identities of people from her past. I think for her it is a comfort to have old friends and long-dead relatives "living" there too in her mind.
One of the residents who wanders constantly was in the sitting area with us. She tried to move furniture and pushed the coffee cart out from the wall and was carrying on a conversation with someone. She approached us and told us to "come on" or we would be late. She then walked across the room and walked directly into the wall! Poor thing! She wasn't hurt, and she came back and sat with us and talked about so-and-so not coming and something about a cash register not working. It was nonsense, but she expected an answer. I replied, "Well sometimes that just happens." She looked at me and yelled, "S- - t happens!" I said, "Yes, it does." She yelled it again, got up and wandered out into the hall. Mother then proceeded to tell me which "family" member she believed the woman to be and said, "She doesn't know anything. She has lost her mind."
Sometimes you just have to laugh. I think maybe the woman spoke for everyone who has Alzheimer's that day. It happens.
Tuesday, November 1, 2011
Eating Daisies
From time to time I find the progress of Mother's Alzheimer's disease, just too much to think about. Last week as I left the home after visiting her, I found myself in tears. It is usually the small changes that make me weep. I think it is because I expect the big changes - incontinence, forgetting, having trouble walking - but the small changes are like a slap across the face.
The leaves have been so beautiful, and I thought I could share some of them with Mother. She has always been an outdoor person and loved the trees and the fall colors. I walked the backyard and chose the most perfect yellow and red leaves I could find. But it was one of those days, and when I showed the leaves to her, she yelled, "Cookies!", snatched them from my hand and had them in her mouth in a split second. I was stunned, but managed to get the leaves out of her mouth. Silly me, I tried it again. I held them away from her and pointed out the colors and pattern, and within a second they were in her mouth again. Once again I got them away from her and went and found a cookie for her.
Eating the nonedible (paper, dirt, flowers) is called pica, and it is a disease. In Mother's case, it is a result of the Alzheimer's. Last year she began to eat flowers from arrangements in the home. This summer, I had to stop taking her flowers because she was eating them. This is what made me cry. Mother loved flowers. The last few times I took flowers to her, she cried and kept saying "how beautiful." Now that is gone. Of course I can take artificial flowers, but it is not the same. Alzheimer's is stealing even the small pleasures of beauty from her. I weep. I rage. But that part of her remains stolen.
The leaves have been so beautiful, and I thought I could share some of them with Mother. She has always been an outdoor person and loved the trees and the fall colors. I walked the backyard and chose the most perfect yellow and red leaves I could find. But it was one of those days, and when I showed the leaves to her, she yelled, "Cookies!", snatched them from my hand and had them in her mouth in a split second. I was stunned, but managed to get the leaves out of her mouth. Silly me, I tried it again. I held them away from her and pointed out the colors and pattern, and within a second they were in her mouth again. Once again I got them away from her and went and found a cookie for her.
Eating the nonedible (paper, dirt, flowers) is called pica, and it is a disease. In Mother's case, it is a result of the Alzheimer's. Last year she began to eat flowers from arrangements in the home. This summer, I had to stop taking her flowers because she was eating them. This is what made me cry. Mother loved flowers. The last few times I took flowers to her, she cried and kept saying "how beautiful." Now that is gone. Of course I can take artificial flowers, but it is not the same. Alzheimer's is stealing even the small pleasures of beauty from her. I weep. I rage. But that part of her remains stolen.
Friday, October 21, 2011
A Spoon Full of Sugar
Maybe you've seen the movie where Mary Poppins sings about a spoon full of sugar helping the medicine go down. If only it were that easy. It is never easy to get a reluctant patient to take medicine be they children or older folks or the family pet.
One of our first clues that Mother was suffering from dementia was her refusal to take any kind of medicine. For most of her life she has only taken the occasional aspirin and her vitamins and calcium. As the Alzheimer's set in, and she had to begin taking more medicine, getting her to take her daily meds became a struggle. If she were handed the pills, she either tucked them in her cheek, spit them out, hid them or threw them. Many a time I would find little stashes of pills around her kitchen.
At the same time, she sometimes took her pills too close together. She would remember to take her pills, and then a few minutes later she would get up to go take them again. Since someone wasn't with her all of the time, this became a major concern. Our initial solution was to get her an automatic pill dispenser. This machine was on a timer and would beep when it was time for her medication, and the little slot would open and there the pills would be. This worked for a short time, but soon we still had the same problem. She would take the pills out of the machine, but she would stash them around her kitchen. The problem then was she would see them at a later time and take them, but it might be right before or after the next dose.
The problem worsened, and it was one of several issues that led the doctor to tell us it was time to place her in nursing facility. Once there, of course, her meds were monitored by the nursing staff. However, the problem continued. The pills would be in the cheek, stashed around her room, spit on the floor or hurled at the staff. We tried putting them in pudding, jelly, jello, etc. but that spoon full of sugar didn't work. Now her medication is powdered and placed in a paste, which she takes from a wooden spoon like we used to use when we ate ice cream from the little cups. From the look on her face, it is not like ice cream or a spoon full of sugar. It reminds me of pinching a cat's cheeks to get it to take a pill. She takes it but licks at the roof of her mouth. At least we know she is getting her meds appropriately, but I wish Mary Poppins could sing Mother into a happier way to get the medicine to go down.
One of our first clues that Mother was suffering from dementia was her refusal to take any kind of medicine. For most of her life she has only taken the occasional aspirin and her vitamins and calcium. As the Alzheimer's set in, and she had to begin taking more medicine, getting her to take her daily meds became a struggle. If she were handed the pills, she either tucked them in her cheek, spit them out, hid them or threw them. Many a time I would find little stashes of pills around her kitchen.
At the same time, she sometimes took her pills too close together. She would remember to take her pills, and then a few minutes later she would get up to go take them again. Since someone wasn't with her all of the time, this became a major concern. Our initial solution was to get her an automatic pill dispenser. This machine was on a timer and would beep when it was time for her medication, and the little slot would open and there the pills would be. This worked for a short time, but soon we still had the same problem. She would take the pills out of the machine, but she would stash them around her kitchen. The problem then was she would see them at a later time and take them, but it might be right before or after the next dose.
The problem worsened, and it was one of several issues that led the doctor to tell us it was time to place her in nursing facility. Once there, of course, her meds were monitored by the nursing staff. However, the problem continued. The pills would be in the cheek, stashed around her room, spit on the floor or hurled at the staff. We tried putting them in pudding, jelly, jello, etc. but that spoon full of sugar didn't work. Now her medication is powdered and placed in a paste, which she takes from a wooden spoon like we used to use when we ate ice cream from the little cups. From the look on her face, it is not like ice cream or a spoon full of sugar. It reminds me of pinching a cat's cheeks to get it to take a pill. She takes it but licks at the roof of her mouth. At least we know she is getting her meds appropriately, but I wish Mary Poppins could sing Mother into a happier way to get the medicine to go down.
Monday, October 17, 2011
Sitters and Walkers
There seems to be two kinds of ambulatary folks in the Alzheimer's unit - sitters and walkers.
Walkers pace the hall. Some "see" things on the floor and stoop to pick up the imagined object. Some look for spouses or children and may stand at the doors and pound on them. Mostly they just walk endlessly from one end to the other occasionally sidetracking into the lounge or dinning room or someone elses room. They tend to be quiet, mumbling only to themselves or occasionally asking a question.
Mother is in the other group. She is a sitter. She sits in her swivel rocker occasionally, but mostly she sits in the lounge and sips a glass of tea or lemonade and watches people or the tv. I often find her there just sitting and watching. Another resident from the general population comes in on Wed. afternoons to hold "church" for the Alzheimer's patients. Sometimes she really gets into church, and she shouts Amen and slaps her knees. Other times she jumps up and says,"Get me out of this. These people are crazy." She sits and visits with the aides and nurses. Sometimes they work puzzels or look at the ads from the newspaper. But most of the time she just sits in her world of the moment. That is mostly what she has - just the moment. Yet, she seems to make a life and some sense of those moments. She can't remember anything for more than a couple of minutes, so sitting and experiencing each moment is all she has. The joy of the moment is real joy, but the moments of fear are real fear too. Yet I know that it is all fleeting - its only the moment. She has to live in the present and the distant past because that is all she has. She sits and waits for the next moment.
Walkers pace the hall. Some "see" things on the floor and stoop to pick up the imagined object. Some look for spouses or children and may stand at the doors and pound on them. Mostly they just walk endlessly from one end to the other occasionally sidetracking into the lounge or dinning room or someone elses room. They tend to be quiet, mumbling only to themselves or occasionally asking a question.
Mother is in the other group. She is a sitter. She sits in her swivel rocker occasionally, but mostly she sits in the lounge and sips a glass of tea or lemonade and watches people or the tv. I often find her there just sitting and watching. Another resident from the general population comes in on Wed. afternoons to hold "church" for the Alzheimer's patients. Sometimes she really gets into church, and she shouts Amen and slaps her knees. Other times she jumps up and says,"Get me out of this. These people are crazy." She sits and visits with the aides and nurses. Sometimes they work puzzels or look at the ads from the newspaper. But most of the time she just sits in her world of the moment. That is mostly what she has - just the moment. Yet, she seems to make a life and some sense of those moments. She can't remember anything for more than a couple of minutes, so sitting and experiencing each moment is all she has. The joy of the moment is real joy, but the moments of fear are real fear too. Yet I know that it is all fleeting - its only the moment. She has to live in the present and the distant past because that is all she has. She sits and waits for the next moment.
Sunday, October 9, 2011
Running Away
Mother has always been something of a go-getter. She is independent and growing up on a farm, she had plenty of space to explore and play. But as a toddler, it wasn't safe for her to wander about without a parent around. So, when her mother was working in the garden or hanging clothes on the line, she rigged up a baby "leash" to keep mother safe. She put a belt on Mother and then tied a rope to the belt and hooked the other end to the line of the clothes line. Mother could run up and down the length of the clothes line and out as far as the rope was long. She had the freedom of some movement, but she was safe, and her mother could get her work done.
Mother is once again on a type of leash. Early on in her disease, she kept saying she wanted to run away. It didn't matter where, she just wanted to run. I think she felt changes in her mind and the only response she had was to "run away" from what she felt. She would sit and talk of "running away" to Hawaii or to Idaho. Sometimes she said she just wanted to get in her car and go, but she didn't know where to go. Once she even drove her car into the far pasture on her farm just as it was getting dark. She wasn't sure where she was, but she did make it back to the house. This has been a major issue as the disease has progressed.
When she first went into an assisted living facility, she did get out and run away. One January day she inserted herself into a group of visitors who were leaving, and she slipped out the door with them. Staff noticed and followed her, but she led them on a merry chase into nearby buildings, through parking lots where she checked for an unlocked car to get into, over a vacant lot where she picked up a piece of PVC pipe and threatened the staff that followed her and finally into a hotel where she tried to "check in". She wasn't wearing shoes only socks on her feet and had walked through mud and crossed a small creek.
Now she lives in a nursing home in the Alzheimer's unit. Her "leash" is an electronic ankle bracelet that sounds an alarm if she gets out. For a while she still tried to run away, but she could be bribed to go back in with chocolate. Now she is fairly content where she is and never tries to run away. In fact, many times she is not comfortable going outside. It is too overwhelming. Now she is safe, but I miss that spunky woman who knew what she wanted and wasn't afraid to go find it.
Mother is once again on a type of leash. Early on in her disease, she kept saying she wanted to run away. It didn't matter where, she just wanted to run. I think she felt changes in her mind and the only response she had was to "run away" from what she felt. She would sit and talk of "running away" to Hawaii or to Idaho. Sometimes she said she just wanted to get in her car and go, but she didn't know where to go. Once she even drove her car into the far pasture on her farm just as it was getting dark. She wasn't sure where she was, but she did make it back to the house. This has been a major issue as the disease has progressed.
When she first went into an assisted living facility, she did get out and run away. One January day she inserted herself into a group of visitors who were leaving, and she slipped out the door with them. Staff noticed and followed her, but she led them on a merry chase into nearby buildings, through parking lots where she checked for an unlocked car to get into, over a vacant lot where she picked up a piece of PVC pipe and threatened the staff that followed her and finally into a hotel where she tried to "check in". She wasn't wearing shoes only socks on her feet and had walked through mud and crossed a small creek.
Now she lives in a nursing home in the Alzheimer's unit. Her "leash" is an electronic ankle bracelet that sounds an alarm if she gets out. For a while she still tried to run away, but she could be bribed to go back in with chocolate. Now she is fairly content where she is and never tries to run away. In fact, many times she is not comfortable going outside. It is too overwhelming. Now she is safe, but I miss that spunky woman who knew what she wanted and wasn't afraid to go find it.
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