Mother lay in her bed half asleep, her chin tucked against her chest. The heating unit hummed away blasting tropical temperatures into the room despite the ice and snow outside the window. Mother stirred as we entered and reached out her hand to me. So like a little child wanting to be picked up and cared for.
I sat on the bed beside her, and my husband sat in the chair beside the bed. Today was a quite day. Only one or two words formed slowly on Mother's lips, and even her smile was slow in coming. But the iron grip of her good hand was as strong as ever. She grabbed my hand and tucked it under her chin. If I moved at all, she grabbed again and held my hand tight against her as if she needed the security of our presence.
So, we sang to her. We sang Joy to the World, Jingle Bells, White Christmas, Hark the Harold Angels Sing in uneven harmony, and then she began to sing in a growling whisper, "We three kings...." That was all she could manage, so we took up the song for her. Her lips would form a word now and then, and she would look at us with the fascination of a child keeping her eyes on our lips and trying to figure out what would come next. Then she closed her eyes, still gripping my hand, and there it was. The faint half crooked smile like a baby just falling asleep. She was happy and content. Music, touch and a room the temperature of the tropics. Merry Christmas, Mother.
Sunday, December 22, 2013
Saturday, December 7, 2013
Into the Dark Future
I have found it difficult to write about Mother this fall. Her decline is more profound and pronounced, and there are days when she sleeps so soundly that she never knows I have been to visit her. I sit by her and hold her hand, but she doesn't stir.
I spoke with her physician, and there is nothing to do but keep her happy and clean and comfortable. The disease has stolen so much of her, yet when she is awake, her smile is still there. But the disease has stolen her speech; she has lost her words. Occasionally she speaks a word or two. I ramble on in a monologue telling of the events of our daily lives. She smiles and occasionally raises her eyebrows in response, but I am not sure she understands anything I say. The sound of my voice, the idea of conversation is something she can connect with at some level.
Perhaps this is the most heart wrenching. I can't tell how much of her is still with us. I can't tell how much she understands and how much is just a reaction. She is more and more like a very small child. A piece of chocolate, a soft drink, a silly song- these give her joy. But more and more she is beginning to stare into space. No reaction. No facial expression. No Mother.
I want to hold her close and keep her from going. At the same time,I want to be able to let her go. We are caught in a limbo world that could go on for years. We are moving through the foggy places of the dark future where we can't see what is to come, and there is no defense for what is to come. We can only hold hands and travel together.
I spoke with her physician, and there is nothing to do but keep her happy and clean and comfortable. The disease has stolen so much of her, yet when she is awake, her smile is still there. But the disease has stolen her speech; she has lost her words. Occasionally she speaks a word or two. I ramble on in a monologue telling of the events of our daily lives. She smiles and occasionally raises her eyebrows in response, but I am not sure she understands anything I say. The sound of my voice, the idea of conversation is something she can connect with at some level.
Perhaps this is the most heart wrenching. I can't tell how much of her is still with us. I can't tell how much she understands and how much is just a reaction. She is more and more like a very small child. A piece of chocolate, a soft drink, a silly song- these give her joy. But more and more she is beginning to stare into space. No reaction. No facial expression. No Mother.
I want to hold her close and keep her from going. At the same time,I want to be able to let her go. We are caught in a limbo world that could go on for years. We are moving through the foggy places of the dark future where we can't see what is to come, and there is no defense for what is to come. We can only hold hands and travel together.
Friday, October 18, 2013
Tangled
Tangled. That is Mother's mind. Like a thin, gold chain, some days the knots and twists in her mind are impossible to get beyond. Just when you think you have identified all the twists, another wraps itself around the chain and pulls tightly. Tangled. And the chain will not give in to even the gentlest probing; the knots only tighten and become unyielding.
Now the tangles are taking Mother's speech. On good days, she can say a word or short phrase understandably and loudly enough to be heard. On bad days, she only blinks her eyes, or nods her head or points with her chin; there are no words. But the worst days are when she whispers. She hisses and slurs words so softly I can't make them out. She becomes frustrated because I can't understand. I become helpless before the tangle of sounds unable to respond to her requests, only guessing what she might be trying to say.
The tangles in her mind and the small stroke from a year ago are taking her body. The clenched and contracted hand no longer responds to therapy. Her shoulder and arm are beginning to contract. On some days her legs work, and she can shuffle along, but now she occasionally must use a wheelchair. The tangles might be in her brain, but they have long tentacles that reach to all of her body slowly wrapping it up in their tight bundles. And I have no tool to untangle the knots in her mind and body. I can only sit and hold her hand and watch.
Thursday, October 3, 2013
The Thing Is . . .
Guilt. It has plagued me since we first moved Mother to assisted living and then to the nursing home. I am not a guilt prone person. It has always been something I avoided or rationalized away. But for the last five years, I have felt guilty almost every day. I've felt guilty when we had to take Mother away from her beloved home. I've felt guilty when I could only stay a few minutes to visit her. I've felt guilty if I couldn't go see her. I've felt guilty when there was a family celebration and she couldn't be there because she was in the nursing home.
None of this guilt makes rational sense. I can't control the Alzheimer's disease. I can't spend all of my time at the home with Mother. I can't ignore the rest of the family. I have to take care of my own health. Yet, the guilt persisted.
But I am beginning to learn to let the guilt go. After being either in the hospital or confined to my own bed for two weeks, I had time to think. Guilt does me no good. Guilt does Mother no good.
I am trying to let go of the guilt of not seeing her every day and to replace that guilt with gratitude for the times I can visit her. I am trying to learn to let the visits be a part of my life instead of letting the visits drive my life. The thing is . . . this is difficult.
So today I had the time to visit Mother. Yet, I still feel the need to let my body recoup from my recent illness. I had to balance the choice. I had to consider. The guilt started. I looked at the situation rationally. I stayed home. But then again, there is time later today . . .
Saturday, September 28, 2013
Dignity Lasts
Mother's behavior is deteriorating once again. As a person progresses through dementia, there is a time when she may be accusatory or destructive, hallucinatory or aggressive. For Mother, who at one time or another has been all of the previous, these stages have passed. She has been more docile and happy. Instead of throwing things at windows and doors trying to get out, she finds comfort in her room. She sometimes gets confused just in the one hallway behind locked doors, which is her Alzheimer's unit. We thought the wild behaviors were behind us. We thought she had reached a quiet state where she smiled and was happy. That is not to be.
Once again, as the tangles in her brain increase, odd behaviors emerge. Some are harmless. She wants to touch her nose to our noses or to the table in front of her. Some are more worrisome or dangerous. She fights being led to the bathroom. She tries to sit down as she walks, and she wants to scoot on the floor. It is as if she slips more and more into infantile behavior.
Yet through all of this, we and the staff at the home try to maintain her dignity. But it is difficult. How can having a teething ring because she chews everything in sight - clothes, papers, towels, flowers, tissues- be dignified? How is scooting on the floor and screaming dignified? How is trying to lap up a drink because you forgot how to pick up a glass dignified? How is eating with your fingers because you don't remember how to use a fork or spoon dignified? No amount of physical or occupational therapy, no amount of talking, no amount distraction can make those things dignified.
Still, there is dignity. There is the deep love and respect for the woman Mother was. There is respect for her being the kind of parent who made us behave in public, who disciplined with love, who taught us tolerance for those different from ourselves, who gave us self-confidence, who taught us faith, who taught us to laugh at ourselves and who loved us no matter what we did - good or bad.
It is love and respect for who she was that allows me to gently say no when she bites, to feed her when she tries to use her fingers to eat soup, to encourage her to stand up straight and tall when she wants to sit and scoot. Perhaps dignity is something that remains even when our mind has gone because we built it long ago.
Once again, as the tangles in her brain increase, odd behaviors emerge. Some are harmless. She wants to touch her nose to our noses or to the table in front of her. Some are more worrisome or dangerous. She fights being led to the bathroom. She tries to sit down as she walks, and she wants to scoot on the floor. It is as if she slips more and more into infantile behavior.
Yet through all of this, we and the staff at the home try to maintain her dignity. But it is difficult. How can having a teething ring because she chews everything in sight - clothes, papers, towels, flowers, tissues- be dignified? How is scooting on the floor and screaming dignified? How is trying to lap up a drink because you forgot how to pick up a glass dignified? How is eating with your fingers because you don't remember how to use a fork or spoon dignified? No amount of physical or occupational therapy, no amount of talking, no amount distraction can make those things dignified.
Still, there is dignity. There is the deep love and respect for the woman Mother was. There is respect for her being the kind of parent who made us behave in public, who disciplined with love, who taught us tolerance for those different from ourselves, who gave us self-confidence, who taught us faith, who taught us to laugh at ourselves and who loved us no matter what we did - good or bad.
It is love and respect for who she was that allows me to gently say no when she bites, to feed her when she tries to use her fingers to eat soup, to encourage her to stand up straight and tall when she wants to sit and scoot. Perhaps dignity is something that remains even when our mind has gone because we built it long ago.
Friday, September 13, 2013
Fragrance Past
They say smell is a strong trigger for memories. I believe it is true. The smell of a gas cook stove and bacon sends me right back fifty years into my grandmother's farmhouse kitchen.
Mother's mother died young, and Mother put some of Grandma's clothes in a plastic bag to keep. One day I found the bag and asked Mother why she was keeping the clothes. She confessed that from time to time she would open the bag to smell the clothes. Then she let me smell them. The clothes smelled like my grandmother, and Mother was keeping that smell, that part of Grandma locked up for as long as she could. It was a comfort to her.
Now when I visit Mother, I find myself smelling her hair and inhaling her scent when I hug her. It is the one part of her that hasn't been lost or become changed beyond recognition. Her smell, despite the nursing home and the institutional soap, is still the same. It is still her. I can close my eyes and remember the Mother who comforted me as a child when I was sick or afraid. I can still smell the Mother who walked in the woods. She still smells like the Mother who made my clothes and ironed my dresses for school. I can still smell the Mother who kept me from wiggling in church by resting her hand on my knee.
The smell is the same, and sometimes, for just that briefest of moments, I can have my mother back. It is a comfort to me.
Mother's mother died young, and Mother put some of Grandma's clothes in a plastic bag to keep. One day I found the bag and asked Mother why she was keeping the clothes. She confessed that from time to time she would open the bag to smell the clothes. Then she let me smell them. The clothes smelled like my grandmother, and Mother was keeping that smell, that part of Grandma locked up for as long as she could. It was a comfort to her.
Now when I visit Mother, I find myself smelling her hair and inhaling her scent when I hug her. It is the one part of her that hasn't been lost or become changed beyond recognition. Her smell, despite the nursing home and the institutional soap, is still the same. It is still her. I can close my eyes and remember the Mother who comforted me as a child when I was sick or afraid. I can still smell the Mother who walked in the woods. She still smells like the Mother who made my clothes and ironed my dresses for school. I can still smell the Mother who kept me from wiggling in church by resting her hand on my knee.
The smell is the same, and sometimes, for just that briefest of moments, I can have my mother back. It is a comfort to me.
Tuesday, August 27, 2013
Bits and Pieces
Mother turned eighty-five recently. She has always been physically strong, but as her mind fails, so is her body failing. She rarely seems to notice the changes. Sometimes when she walks, she will say, "I'm dragging my foot." She notices that the small stroke took her sure stride, but she just smiles. Her teeth are beginning to break, and she is getting cavities, but she just smiles and howls louder when we brush and floss. She ability to speak is diminishing. The stroke didn't affect her formation of words, but she just can't find the words. She stares or speaks in a whisper or simple mouths the words. Sometimes she just blinks, and I must figure out if that means yes or no. Her left hand curled tightly to her body doesn't seem to exist for her. She rarely moves the arm at all any more.
In bits and pieces she is leaving us. I wonder when what is gone will be so great that we will not recognize what is left. Where is that tipping point? Or will there always be enough bits and pieces to recognize?
In bits and pieces she is leaving us. I wonder when what is gone will be so great that we will not recognize what is left. Where is that tipping point? Or will there always be enough bits and pieces to recognize?
Wednesday, July 17, 2013
I'm Dying
It has been months since Mother told us she was dying, but that is what she said again yesterday. I found her dozing when I arrived, and it took her a bit to awaken and focus on me. But her first words to me were, "I'm dying." In the past she has been able to describe what she was feeling. She has described it as being in a boat in the fog or as a sinking feeling. Sometimes she has said it is like things are fading. Yesterday she could not tell me what she felt. She just repeated, "I'm dying."
The look on her face was not terror or pain. She just looked anxious, and her eyes had that far away stare that dementia patients get. That "the lights are one but no one is home" look. She grabbed my hand. I told her I thought she was okay for now, and she relaxed. I stoked her hair and put lotion on her face. I told her about my day and fed her peanut butter crackers and gave her a Coke.
Usually, some hugs and kisses and some food helps her decide that she is not dying. But yesterday was different. She remained in her "I'm dying" mode. It was as if she were holding herself close to keep what mind she has left intact. Yes, she smiled and told me the crackers were sooooooooo good and the Coke was strong and burned. She said the lotion felt soooooooooo good. She pinched my arm over and over. It was the usual routine, but there was something new there between us.
She is dying. And it is a slow, horrible process that will take years, and she is sometimes aware of it. That is even more horrible. Crackers and Cokes, hugs and kisses can't change the process. I can only hold her hand and be there through the shadow times.
The look on her face was not terror or pain. She just looked anxious, and her eyes had that far away stare that dementia patients get. That "the lights are one but no one is home" look. She grabbed my hand. I told her I thought she was okay for now, and she relaxed. I stoked her hair and put lotion on her face. I told her about my day and fed her peanut butter crackers and gave her a Coke.
Usually, some hugs and kisses and some food helps her decide that she is not dying. But yesterday was different. She remained in her "I'm dying" mode. It was as if she were holding herself close to keep what mind she has left intact. Yes, she smiled and told me the crackers were sooooooooo good and the Coke was strong and burned. She said the lotion felt soooooooooo good. She pinched my arm over and over. It was the usual routine, but there was something new there between us.
She is dying. And it is a slow, horrible process that will take years, and she is sometimes aware of it. That is even more horrible. Crackers and Cokes, hugs and kisses can't change the process. I can only hold her hand and be there through the shadow times.
Sunday, July 7, 2013
How I Do Love Thee
I love you when all you can do is smile.
When you forget how to raise a glass to your lips and bend over the glass and slurp and sip, I love you.
When you press your nose to mine and blink and stare like a child playing a game, I love you.
I love you when you chew holes in your clothes or chew the buttons off your pajamas.
I love you though you howl and bellow. I love you though you don't always know who I am.
When you cry because you think your food or your jacket is dead, I love you.
When you fight having your teeth flossed, and you breath can knock me over, I love you.
I love you when you ask the same question ten times in as many minutes.
I love you when your face is dirty and your hair is a mess.
I love you when you throw your water on me or pinch my arm.
I love you when you tell me I am a bad girl.
That is not always you. I love You.
I love the you who gave me time when I was a child. Who brushed my hair and ironed my dresses.
You who teased and prodded and made me do my best.
I love you who held me when I cried and kept me safe from so many of the traumas of life.
I love the you who played with me. The one who taught me to cook and to grow a garden.
I love the you who taught me kindness and fairness and faith.
I love the you who wore underwear with holes and old dresses so that I could have shiny new shoes.
You who celebrated every accomplishment in my life. You who were always there with advise.
You never left or failed me, and I will stay with you because that is how I love you.
When you forget how to raise a glass to your lips and bend over the glass and slurp and sip, I love you.
When you press your nose to mine and blink and stare like a child playing a game, I love you.
I love you when you chew holes in your clothes or chew the buttons off your pajamas.
I love you though you howl and bellow. I love you though you don't always know who I am.
When you cry because you think your food or your jacket is dead, I love you.
When you fight having your teeth flossed, and you breath can knock me over, I love you.
I love you when you ask the same question ten times in as many minutes.
I love you when your face is dirty and your hair is a mess.
I love you when you throw your water on me or pinch my arm.
I love you when you tell me I am a bad girl.
That is not always you. I love You.
I love the you who gave me time when I was a child. Who brushed my hair and ironed my dresses.
You who teased and prodded and made me do my best.
I love you who held me when I cried and kept me safe from so many of the traumas of life.
I love the you who played with me. The one who taught me to cook and to grow a garden.
I love the you who taught me kindness and fairness and faith.
I love the you who wore underwear with holes and old dresses so that I could have shiny new shoes.
You who celebrated every accomplishment in my life. You who were always there with advise.
You never left or failed me, and I will stay with you because that is how I love you.
Tuesday, June 25, 2013
The Cost of Dementia
My sister recently gave me a newspaper clipping that talked about the high cost of dementia. The article by Karen Kaplan from the Los Angeles Times states that the cost of dementia is higher than the cost for treating people with cancer or heart disease.
What Kaplan says is true. I've seen it in other families, and we are experiencing it ourselves. Most people with dementia will run through their own resources very quickly. I know that Mother's nursing home and medical costs top $50,000 a year, which is more than her income. When people run out of money, medicaid helps with the cost, but think of what that costs our society when according to the article, 14.7 percent of Americans over the age of 70 have some type of dementia. And medicaid does not cover the cost of dental care, or clothing. The $30 a month allowed for personal care is minimal too. Even with Mother's income and medicaid, the family still picks up several hundred dollars worth of expenses each month. Kaplan says that when informal care for paying bills, buying groceries, cleaning the resident, etc are tabulated, the cost of care rises even more.
But the cost of dementia goes way beyond money. For me, despite the financial pressure of dementia, the emotional cost is even greater. When a parent who has always been loving hits you, or curses you, the emotional toll is tremendous. The daily grind of having to cajole the parent into brushing his teeth or keeping his clothes on grinds away at your heart. The pain of not being recognized by your parent tears at your soul. Watching your parent slip into the fog and not being able to hold on to them is devastating. And families deal with this day in and day out year after year after year.
The most difficult part is that there is little to be done. We have to pay the money, we have to brush the teeth, we have to bear the insult of being unknown to our parents, we have to move forward day by day. We just put one foot in front of the other and take the next step.
What Kaplan says is true. I've seen it in other families, and we are experiencing it ourselves. Most people with dementia will run through their own resources very quickly. I know that Mother's nursing home and medical costs top $50,000 a year, which is more than her income. When people run out of money, medicaid helps with the cost, but think of what that costs our society when according to the article, 14.7 percent of Americans over the age of 70 have some type of dementia. And medicaid does not cover the cost of dental care, or clothing. The $30 a month allowed for personal care is minimal too. Even with Mother's income and medicaid, the family still picks up several hundred dollars worth of expenses each month. Kaplan says that when informal care for paying bills, buying groceries, cleaning the resident, etc are tabulated, the cost of care rises even more.
But the cost of dementia goes way beyond money. For me, despite the financial pressure of dementia, the emotional cost is even greater. When a parent who has always been loving hits you, or curses you, the emotional toll is tremendous. The daily grind of having to cajole the parent into brushing his teeth or keeping his clothes on grinds away at your heart. The pain of not being recognized by your parent tears at your soul. Watching your parent slip into the fog and not being able to hold on to them is devastating. And families deal with this day in and day out year after year after year.
The most difficult part is that there is little to be done. We have to pay the money, we have to brush the teeth, we have to bear the insult of being unknown to our parents, we have to move forward day by day. We just put one foot in front of the other and take the next step.
Thursday, June 13, 2013
Dignity
One of the most valued of human rights is dignity. Dignity signifies that a person is valued and worthy of respect. It can also mean the self respect we project to the world. There is very little innate dignity in Alzheimer's.
Those plagued with dementia have lost much of what the rest of us call dignified behavior. Residents may walk out of their rooms naked or wearing only their diapers before staff can get them back into clothes. Sometimes a resident will take off her clothes while watching TV or while waiting for dinner to be served. Sometimes a resident will play with himself while sitting in the common area until staff can get him distracted or out of the room.
There is little dignity in incontinence and having to have someone change one's diaper. There is little dignity in being next in line for a bath and having to be belted into a PVC pipe chair to be bathed. There is little dignity in not being able to tell which plate or cup is yours and eating after everyone else. There is little dignity in howling over and over because you have lost your mind, and you don't know that you are howling.
Yet, even in the midst of all of the undignified behaviors, there is dignity. There is dignity in the kindness of an aide that says, "Let's go get your pajamas on if you don't want to wear clothes." There is dignity in an aide saying, "Well, Mr. Smith, let's take you to the bathroom and help you get cleaned up." There is dignity in the patience that is extended everyday to those whose behaviors are undignified. Despite the indignity of Alzheimer's, Mother and others are treated with great respect. They are still valued and loved, and by the way they are treated, we preserve the dignity they cannot give themselves.
Those plagued with dementia have lost much of what the rest of us call dignified behavior. Residents may walk out of their rooms naked or wearing only their diapers before staff can get them back into clothes. Sometimes a resident will take off her clothes while watching TV or while waiting for dinner to be served. Sometimes a resident will play with himself while sitting in the common area until staff can get him distracted or out of the room.
There is little dignity in incontinence and having to have someone change one's diaper. There is little dignity in being next in line for a bath and having to be belted into a PVC pipe chair to be bathed. There is little dignity in not being able to tell which plate or cup is yours and eating after everyone else. There is little dignity in howling over and over because you have lost your mind, and you don't know that you are howling.
Yet, even in the midst of all of the undignified behaviors, there is dignity. There is dignity in the kindness of an aide that says, "Let's go get your pajamas on if you don't want to wear clothes." There is dignity in an aide saying, "Well, Mr. Smith, let's take you to the bathroom and help you get cleaned up." There is dignity in the patience that is extended everyday to those whose behaviors are undignified. Despite the indignity of Alzheimer's, Mother and others are treated with great respect. They are still valued and loved, and by the way they are treated, we preserve the dignity they cannot give themselves.
Saturday, June 8, 2013
Physical Slide
I didn't see Mother for six days out of the last two weeks. A brief stay in the hospital. Visiting a sister who had cancer surgery. Spending time with grandchildren and children. These are all vital and a part of my life, but when these other parts of life call, I have to miss some visits with Mother. I often feel so very torn at these times. I wish I could be two places at once, but because that is impossible, I have to rely on the care she receives from the staff at the home to be enough.
The one positive thing about being gone is that I can get some perspective on Mother's condition. This time I noticed that Mother is slipping physically. When she was first diagnosed, she had no other health problems. Now she has had a mini-stroke and her hand is clenched. She coughs frequently. Walking is becoming more difficult. At first, people told me that it was too bad that she had such perfect health. And now I understand better. With perfect health, Mother was trapped in the hell of dementia with a strong body. Now, she is still strong, but I am beginning to see her body beginning to fail.
I don't know if this is a blessing or just a part of the cursedness of Alzheimer's. On most days, Mother stays in her bed and naps. She will sometimes sit with the other residents or be willing to go outside, but mostly I sit and hold her hand. I massage her arms and legs and moisturize her face. She smiles and whispers. I have to get very close to hear her, and sometimes it is impossible to know what she is saying.
Her physical decline is just as devastating as her mental decline. The long goodbye, is how Alzheimer's has been labeled. It is true, and it is a torturous journey.
The one positive thing about being gone is that I can get some perspective on Mother's condition. This time I noticed that Mother is slipping physically. When she was first diagnosed, she had no other health problems. Now she has had a mini-stroke and her hand is clenched. She coughs frequently. Walking is becoming more difficult. At first, people told me that it was too bad that she had such perfect health. And now I understand better. With perfect health, Mother was trapped in the hell of dementia with a strong body. Now, she is still strong, but I am beginning to see her body beginning to fail.
I don't know if this is a blessing or just a part of the cursedness of Alzheimer's. On most days, Mother stays in her bed and naps. She will sometimes sit with the other residents or be willing to go outside, but mostly I sit and hold her hand. I massage her arms and legs and moisturize her face. She smiles and whispers. I have to get very close to hear her, and sometimes it is impossible to know what she is saying.
Her physical decline is just as devastating as her mental decline. The long goodbye, is how Alzheimer's has been labeled. It is true, and it is a torturous journey.
Sunday, May 26, 2013
The Lesser of Two Evils
Sometimes in this journey through Alzheimer's, we are faced with choosing the lesser of two evils. That was the case this week for me.
Mother's left hand has become even more contracted, and she can rarely open it and it hurts her. The aides at the nursing home have to pry her hand open each morning to take off the brace she wears at night. She screams.They have to pry her hand open to wash her hand because she keeps it in such a tight grip that her palm gets yeasty and can get infected. She screams. They have to pry her hand open to cut her nails. She screams. They have to pry her hand open to put a rolled up wash cloth in it for the day, and if she pulls it out with her teeth, they have to do it again. She screams. They have to pry her hand open to put the brace on at night. She screams.
The doctor suggested botox injections to help her muscles relax and to release the contraction in her hand. I thought it was worth a try. But I was not prepared for the process of getting the shots for her. I explained over and over what was going to happen. The doctor explained. Mother looked at her arm, but none of what we said made sense to her. I held her arm. My husband held her other hand and tried to distract her. The doctor placed the needle in her arm, and she screamed bloody murder. The look on her face broke my heart. She was terrified and angry. She tried to bite me. She was like an animal who doesn't understand that it is only a small sting. She screamed at the top of her lungs.
After four or five shots, it was over. She was fine, and amazingly, she had absolutely no memory of the shots. She was calm and smiling at everyone. Her arm didn't hurt. She was happy, and she had no grudge towards me or the doctor. It was as if she were trying to figure out what we were all doing there.
But in my mind I can still see her face contorted in terror and pain. I can still hear her scream. It will take two weeks to know if the botox will help with the contraction, but I don't know if I can put her through those shots again. But therein lies the dilemma. Do I put her through the trauma of botox shots or the daily trauma of prying open her clenched hand. Which is the lesser evil? Which is the more loving? There are no easy answers to most of life, and there are definitely no easy answer here.
Mother's left hand has become even more contracted, and she can rarely open it and it hurts her. The aides at the nursing home have to pry her hand open each morning to take off the brace she wears at night. She screams.They have to pry her hand open to wash her hand because she keeps it in such a tight grip that her palm gets yeasty and can get infected. She screams. They have to pry her hand open to cut her nails. She screams. They have to pry her hand open to put a rolled up wash cloth in it for the day, and if she pulls it out with her teeth, they have to do it again. She screams. They have to pry her hand open to put the brace on at night. She screams.
The doctor suggested botox injections to help her muscles relax and to release the contraction in her hand. I thought it was worth a try. But I was not prepared for the process of getting the shots for her. I explained over and over what was going to happen. The doctor explained. Mother looked at her arm, but none of what we said made sense to her. I held her arm. My husband held her other hand and tried to distract her. The doctor placed the needle in her arm, and she screamed bloody murder. The look on her face broke my heart. She was terrified and angry. She tried to bite me. She was like an animal who doesn't understand that it is only a small sting. She screamed at the top of her lungs.
After four or five shots, it was over. She was fine, and amazingly, she had absolutely no memory of the shots. She was calm and smiling at everyone. Her arm didn't hurt. She was happy, and she had no grudge towards me or the doctor. It was as if she were trying to figure out what we were all doing there.
But in my mind I can still see her face contorted in terror and pain. I can still hear her scream. It will take two weeks to know if the botox will help with the contraction, but I don't know if I can put her through those shots again. But therein lies the dilemma. Do I put her through the trauma of botox shots or the daily trauma of prying open her clenched hand. Which is the lesser evil? Which is the more loving? There are no easy answers to most of life, and there are definitely no easy answer here.
Sunday, May 19, 2013
Looking at the Mountains
When I was about eight years old, we took a family vacation to the Rocky Mountains with friends. I loved the whole experience and didn't want to leave. But as with all things, the vacation had an end point, and we loaded into the cars and headed east. I was riding in our friends' car with their daughter, and as we headed into eastern Colorado, my friend's father told us to turn around for our last glimpse of the mountains. "You might never see them again," he said. To never see the mountains again struck me as an impossibility, and being the stubborn child I was, I refused to turn to look. I knew in my heart, I would see them again.
And I have seen them again. I lived in them for five years and have enjoyed many visits since that time. But as I grow older, I do turn and look at the last blue fingernail of mountains as we head east. I watch in the mirrors and turn in my seat, trying with my whole being to keep my eye on them. I don't want to miss the last glimpse as the disappear below the horizon.
Mother gets that look in her eye now too. On some days she will stare deeply into my eyes and say my name softly. She really looks at my face as if she is trying to memorize each feature. It is as if she is turning to look because she may never see me again. I wonder if somewhere deep in her mind she is trying to hang on to every last bit of her memory. She is trying to emblazon the images into her mind because at some level she knows she is dipping below a horizon and may never see the images again. Each face, each moment is looked at intently. For Mother, every day is possibly the last day she will remember.
Turn and look, you might never see them again.
And I have seen them again. I lived in them for five years and have enjoyed many visits since that time. But as I grow older, I do turn and look at the last blue fingernail of mountains as we head east. I watch in the mirrors and turn in my seat, trying with my whole being to keep my eye on them. I don't want to miss the last glimpse as the disappear below the horizon.
Mother gets that look in her eye now too. On some days she will stare deeply into my eyes and say my name softly. She really looks at my face as if she is trying to memorize each feature. It is as if she is turning to look because she may never see me again. I wonder if somewhere deep in her mind she is trying to hang on to every last bit of her memory. She is trying to emblazon the images into her mind because at some level she knows she is dipping below a horizon and may never see the images again. Each face, each moment is looked at intently. For Mother, every day is possibly the last day she will remember.
Turn and look, you might never see them again.
Saturday, May 4, 2013
Old Lady Fights
One would think that life in a nursing home, in an Alzheimer's unit, would be monotonously the same, but it is not. From time to time the full moon, or a weather front, or just the dynamic of group life creates an electric moment when all order disappears.
In the nursing home, the men may shout or get rough momentarily with each other, but with the women, it is another story. They are more like adolescent girls, and they can get quite ugly. At school, we know that boys may come to the brink of a fight, or they might even throw a punch, but it is over quickly. On the other hand, a girl fight can be vicious, and the friends of the girls will take sides and join the fight. It happens with the old ladies too.
In Mother's Alzheimers' unit, many of the residents spend time sitting in the dinning room/ lounge. Mother has a favorite table in a small adjoining dinning area where she can see the TV and watch the other residents. Recently, two of the old women were aggravated with each other. One stood in the hall and threw insults at Lulu. Now, Lulu is tall and thin, and has had a broken hip, which she will tell you hurts her terribly all the time, but the insults were too much. She flew out of her chair, well maybe I should say, she hobbled more quickly than usual toward the insult thrower. She was ready to fight, and went at the other woman as one would a stray dog. She shooed her away, told her to shut her mouth, and threatened to slap her.
The woman retreated somewhat, but as Lulu returned to her chair, she decided to use an obscene gesture to make her final point. Unfortunately, as Lulu's finger went into the air, I noticed that it was the wrong finger. The other woman made a retort, and Lulu made her gesture again. I have to say that Mother had watched the whole thing intently. Then Mother looked at me, grinned, and yelled," Up your ass!"
I have never heard my mother say anything like that before, but she was smiling and loved being in on the old lady fight. Mother found some delight in the phrase, the finger and the whole situation and made her response again, only louder. I suggested that she say something different, but on she went shouting again and again.
Finally, I said,"You enjoyed what Lulu did, didn't you." She sipped her tea and gave me a wink and a smile.
Old lady fights. I had to laugh. The whole thing was hysterical. Never a dull moment in the Alzheimer's unit.
In the nursing home, the men may shout or get rough momentarily with each other, but with the women, it is another story. They are more like adolescent girls, and they can get quite ugly. At school, we know that boys may come to the brink of a fight, or they might even throw a punch, but it is over quickly. On the other hand, a girl fight can be vicious, and the friends of the girls will take sides and join the fight. It happens with the old ladies too.
In Mother's Alzheimers' unit, many of the residents spend time sitting in the dinning room/ lounge. Mother has a favorite table in a small adjoining dinning area where she can see the TV and watch the other residents. Recently, two of the old women were aggravated with each other. One stood in the hall and threw insults at Lulu. Now, Lulu is tall and thin, and has had a broken hip, which she will tell you hurts her terribly all the time, but the insults were too much. She flew out of her chair, well maybe I should say, she hobbled more quickly than usual toward the insult thrower. She was ready to fight, and went at the other woman as one would a stray dog. She shooed her away, told her to shut her mouth, and threatened to slap her.
The woman retreated somewhat, but as Lulu returned to her chair, she decided to use an obscene gesture to make her final point. Unfortunately, as Lulu's finger went into the air, I noticed that it was the wrong finger. The other woman made a retort, and Lulu made her gesture again. I have to say that Mother had watched the whole thing intently. Then Mother looked at me, grinned, and yelled," Up your ass!"
I have never heard my mother say anything like that before, but she was smiling and loved being in on the old lady fight. Mother found some delight in the phrase, the finger and the whole situation and made her response again, only louder. I suggested that she say something different, but on she went shouting again and again.
Finally, I said,"You enjoyed what Lulu did, didn't you." She sipped her tea and gave me a wink and a smile.
Old lady fights. I had to laugh. The whole thing was hysterical. Never a dull moment in the Alzheimer's unit.
Wednesday, April 24, 2013
Stealing Mother - Again
Alzheimer's disease steals. It is stealing my mother from me. Parts of her remain, but so much of who she was is gone. The disease steals slowly. Oh, at first it seems like it rushes off with great chunks of its victims, but that is only because the chunks it steals are the big, most noticeable parts. In reality, it steals slowly. It inches away with mere molecules of the victim. Then one day, you notice that even more of the person you love is gone.
Alzheimer's disease continues to steal Mother. It has stolen her ability to know us at times. Yesterday, I was Mama to her. Usually she finally recognizes me as me, but not yesterday. I was her mama for my entire visit. She is the frightened little girl who wants to cling to my neck crying mama. She is the little girl who wants to hold my hand and look in my eyes and say, "Mama, mama, mama."
Alzheimer's disease has stolen Mother's ability to recognize where she is at times. As we walked down the hall to her room, Mother stopped and grabbed my arm harder. "Where are we?" She was lost in that one hall. She couldn't recognize her room until she saw her name beside the door. She continued to walk with me, but her grip didn't relax until she saw her name. She was frightened. To her, it was like stepping into the unknown. She was unsure, but willing to trust me to guide her. Mother had always been the one to know exactly where she was, which direction she was headed, how far she needed to go. She was never lost. Now she is lost most of the time.
Alzheimer's is a thief. It steals, and nothing can stop it. I hold on to the small pieces of Mother that it hasn't taken because I know that in time, Alzheimer's will steal those too.
Alzheimer's disease continues to steal Mother. It has stolen her ability to know us at times. Yesterday, I was Mama to her. Usually she finally recognizes me as me, but not yesterday. I was her mama for my entire visit. She is the frightened little girl who wants to cling to my neck crying mama. She is the little girl who wants to hold my hand and look in my eyes and say, "Mama, mama, mama."
Alzheimer's disease has stolen Mother's ability to recognize where she is at times. As we walked down the hall to her room, Mother stopped and grabbed my arm harder. "Where are we?" She was lost in that one hall. She couldn't recognize her room until she saw her name beside the door. She continued to walk with me, but her grip didn't relax until she saw her name. She was frightened. To her, it was like stepping into the unknown. She was unsure, but willing to trust me to guide her. Mother had always been the one to know exactly where she was, which direction she was headed, how far she needed to go. She was never lost. Now she is lost most of the time.
Alzheimer's is a thief. It steals, and nothing can stop it. I hold on to the small pieces of Mother that it hasn't taken because I know that in time, Alzheimer's will steal those too.
Monday, April 15, 2013
Wild
Wild. The word has many connotations. Like the flora and fauna in the woods, it can mean untamed, undomesticated. It can mean acting with abandon or uninhibited. But it can also mean out of control and unmanageable. Today Mother was wild in all senses of the word.
Mother looked calm and happy when I walked in her room, but that did not last long. Greeting her and sitting on the edge of her bed, she came at me full force. She raised up and grabbed my neck and head and kissed me, then pulled me over and hugged and kissed me some more. She is incredibly strong, and it takes a bit maneuvering to break her grip. I was finally able to sit up and hold her hand, but here she came at me again. One wouldn't think that an old woman could get you down and keep you down, but Mother can. Gently, gently, I got her to relax and let me sit and hold her hand.
A young, male aide came into the room. Mother howled and cried. She thought he was her oldest grandson. I have to say there was a striking resemblance, but she could not be satisfied that it wasn't her grandson. She cried and cried after him. I had to finally tell her he had to go to work.
Another resident came into the room and sat and visited. Mother cried as the old woman told about her first baby being born dead. Mother became inconsolable, she grabbed me like I might disappear, her grip nearly cutting off the circulation in my hand and crushing my bones.
For over thirty minutes I tried to calm her while evading her grip. Nothing could get her distracted. Nothing could tame her emotions. Nothing could help her manage her behavior. Like a child, she finally wore herself out and was ready for a nap. But I left wanting to run away from her. I wanted to get away from the frenetic howling. I wanted to flee from her iron grasp.
The wild, uncontrollable emotions she had today tear at me. It is not her howling so loudly that the aides come running; it is not the death grip she can put on my hands, it is the idea that she is so out of control. She is wild and unrecognizable as Mother. I wept as I left her. The wild roller coaster visit has left me exhausted, and I too want to be wild and just run away.
Mother looked calm and happy when I walked in her room, but that did not last long. Greeting her and sitting on the edge of her bed, she came at me full force. She raised up and grabbed my neck and head and kissed me, then pulled me over and hugged and kissed me some more. She is incredibly strong, and it takes a bit maneuvering to break her grip. I was finally able to sit up and hold her hand, but here she came at me again. One wouldn't think that an old woman could get you down and keep you down, but Mother can. Gently, gently, I got her to relax and let me sit and hold her hand.
A young, male aide came into the room. Mother howled and cried. She thought he was her oldest grandson. I have to say there was a striking resemblance, but she could not be satisfied that it wasn't her grandson. She cried and cried after him. I had to finally tell her he had to go to work.
Another resident came into the room and sat and visited. Mother cried as the old woman told about her first baby being born dead. Mother became inconsolable, she grabbed me like I might disappear, her grip nearly cutting off the circulation in my hand and crushing my bones.
For over thirty minutes I tried to calm her while evading her grip. Nothing could get her distracted. Nothing could tame her emotions. Nothing could help her manage her behavior. Like a child, she finally wore herself out and was ready for a nap. But I left wanting to run away from her. I wanted to get away from the frenetic howling. I wanted to flee from her iron grasp.
The wild, uncontrollable emotions she had today tear at me. It is not her howling so loudly that the aides come running; it is not the death grip she can put on my hands, it is the idea that she is so out of control. She is wild and unrecognizable as Mother. I wept as I left her. The wild roller coaster visit has left me exhausted, and I too want to be wild and just run away.
Saturday, April 6, 2013
Struggle of Love
I am struggling with deeply mixed feelings this week, and part of my struggle is with guilt. Always guilt. The guilt is misplaced, and intellectually, I know that, but emotionally, I still feel guilt. It is as if I am responsible not just for Mother's care but for her having dementia. I feel responsible for how she feels knowing that that kind of thinking is senseless. Nevertheless, I feel it. My mind wrestles with my heart.
Over the last months several friends have lost their mothers, and even though the pain and sorrow they feel is deep and real, I imagine there is a sense of relief. I know that my prayers have been that their mothers have been welcomed home into the kingdom of heaven, but I have also whispered a prayer of thanks that their mother's struggles are over. And therein lies my guilt.
I welcome Mother's smile each time a visit. Yesterday, when I first arrived, I took her face in my hands and kissed her cheek as I always do. She grinned and called me by name and said, "Oh, I love you." It was so sweet. She knew me yesterday. I was overcome with joy that she could recognize me and express her love. I was happy to have that moment with her.
But as we went for a walk in the hall, it was evident that she was having trouble walking. He left leg and foot were not working well. He arm was curled and her hand clenched. Her diaper was full and sagging. I changed her diaper, but there is nothing I can do about her arm or hand or leg.
Her talk turned to silly jabber. She howled. She accused everyone else of having lost their minds and not knowing a thing. She got upset when another resident had a cookie and wanted one too. I got a cookie for her, and she tried to stuff the whole thing in her mouth at once and got choked. I have to remind her to sip through the straw of her drink and not just chew on it. She wanted to hold hands, but she squeezed my hand so tightly that I thought she might break a bone. Still she tried to grab my hand and would press her lips together and grip as hard as she could. She is still very strong and she can inflict pain.
And this is where the guilt comes. I cherish my Mother. Despite the horrors of the dementia, I enjoy most of my visits with her. There is still her presence that I don't want to give up. Yet, there are days when I wish the struggle might be over. I don't want to lose her, but sometimes the struggle, the loss of who she is and was is overpowering. Sometimes her life seems full of joy, and sometimes nothing but misery. The emotions clash and roll through me. And on the days when I wish the battle was done, I feel guilt beyond measure. Even confessing to these emotions generates guilt, but they are real emotions and denying them doesn't make them disappear. So, perhaps acknowledging them and knowing that at the core of it all is love will help ease my struggle. But both Mother and I will continue to struggle in our own ways.
Over the last months several friends have lost their mothers, and even though the pain and sorrow they feel is deep and real, I imagine there is a sense of relief. I know that my prayers have been that their mothers have been welcomed home into the kingdom of heaven, but I have also whispered a prayer of thanks that their mother's struggles are over. And therein lies my guilt.
I welcome Mother's smile each time a visit. Yesterday, when I first arrived, I took her face in my hands and kissed her cheek as I always do. She grinned and called me by name and said, "Oh, I love you." It was so sweet. She knew me yesterday. I was overcome with joy that she could recognize me and express her love. I was happy to have that moment with her.
But as we went for a walk in the hall, it was evident that she was having trouble walking. He left leg and foot were not working well. He arm was curled and her hand clenched. Her diaper was full and sagging. I changed her diaper, but there is nothing I can do about her arm or hand or leg.
Her talk turned to silly jabber. She howled. She accused everyone else of having lost their minds and not knowing a thing. She got upset when another resident had a cookie and wanted one too. I got a cookie for her, and she tried to stuff the whole thing in her mouth at once and got choked. I have to remind her to sip through the straw of her drink and not just chew on it. She wanted to hold hands, but she squeezed my hand so tightly that I thought she might break a bone. Still she tried to grab my hand and would press her lips together and grip as hard as she could. She is still very strong and she can inflict pain.
And this is where the guilt comes. I cherish my Mother. Despite the horrors of the dementia, I enjoy most of my visits with her. There is still her presence that I don't want to give up. Yet, there are days when I wish the struggle might be over. I don't want to lose her, but sometimes the struggle, the loss of who she is and was is overpowering. Sometimes her life seems full of joy, and sometimes nothing but misery. The emotions clash and roll through me. And on the days when I wish the battle was done, I feel guilt beyond measure. Even confessing to these emotions generates guilt, but they are real emotions and denying them doesn't make them disappear. So, perhaps acknowledging them and knowing that at the core of it all is love will help ease my struggle. But both Mother and I will continue to struggle in our own ways.
Tuesday, April 2, 2013
Calling the Doctor
Placing Mother in the nursing home was a wrenching experience. It was the worst for her; she had to leave her home and she did not go willingly. It was difficult for us because we had to take her away from the home and land she loved. What I didn't realize was that in many small ways living in a nursing home, takes away control from the family.
Mother's hand has become more and more contracted. She now wears a brace, but despite repeated training, the staff seems to unable to get it on correctly. Nor do they have her wearing it according to the schedule set by the therapist. Even worse has been the fact that the therapy service provider is not communicating with us despite two meetings where we asked to be notified of changes in Mother's therapy. After months of trying to work with the therapy provider at the local level, I finally went to the supervisor at the home office. Now, we have had better communication; however, I have very little confidence that this will last.
Not being able to receive appropriate therapy is difficult, but I am a persistent advocate. What cuts at me most is the fact that in a nursing home, the family is not truly brought into the loop. Now Mother needs to have a botox shot in her arm to help release the contraction in her hand. I want to go to the appointment with her, but I can't call the doctor and make the appointment. I tried. I have to tell the social worker when I can go, then she has to make the appointment and call me.
This works for any medical service Mother needs. When I have a question for her primary care physician, I am supposed to go through the nurse at the home. I understand that it lets the staff know everything that goes on medically with Mother, but I never dreamed that by placing her in the nursing home we were giving up a level of involvement and control over her care. If the process worked well at the home, this might not be an issue, but often it does not work.
Mother had a deep cough for days before I finally got the nursing staff to call the doctor. They would go back to check on her and for the three minutes they were there she wouldn't cough, so they didn't think there was a problem. I had to insist that she needed to see the doctor, and then it took two rounds of antibiotics to clear up her cough and infection. I complained to the head nurse. I got promises. But what I want is good, consistent care for Mother, and I want to be in the loop. I want to be informed, and I want to be listened to.
Other families may admit their loved ones and let the staff and home make the decisions. That is fine. We don't work that way. Mother has to be in a nursing facility, but that doesn't mean we will warehouse her. We are a part of her life, and we are the watchdogs over her care. So as frustrating as it is not to be able to call a doctor, I will persist, and I will continue to wedge myself into the process hoping to get the best care for Mother that is possible.
Mother's hand has become more and more contracted. She now wears a brace, but despite repeated training, the staff seems to unable to get it on correctly. Nor do they have her wearing it according to the schedule set by the therapist. Even worse has been the fact that the therapy service provider is not communicating with us despite two meetings where we asked to be notified of changes in Mother's therapy. After months of trying to work with the therapy provider at the local level, I finally went to the supervisor at the home office. Now, we have had better communication; however, I have very little confidence that this will last.
Not being able to receive appropriate therapy is difficult, but I am a persistent advocate. What cuts at me most is the fact that in a nursing home, the family is not truly brought into the loop. Now Mother needs to have a botox shot in her arm to help release the contraction in her hand. I want to go to the appointment with her, but I can't call the doctor and make the appointment. I tried. I have to tell the social worker when I can go, then she has to make the appointment and call me.
This works for any medical service Mother needs. When I have a question for her primary care physician, I am supposed to go through the nurse at the home. I understand that it lets the staff know everything that goes on medically with Mother, but I never dreamed that by placing her in the nursing home we were giving up a level of involvement and control over her care. If the process worked well at the home, this might not be an issue, but often it does not work.
Mother had a deep cough for days before I finally got the nursing staff to call the doctor. They would go back to check on her and for the three minutes they were there she wouldn't cough, so they didn't think there was a problem. I had to insist that she needed to see the doctor, and then it took two rounds of antibiotics to clear up her cough and infection. I complained to the head nurse. I got promises. But what I want is good, consistent care for Mother, and I want to be in the loop. I want to be informed, and I want to be listened to.
Other families may admit their loved ones and let the staff and home make the decisions. That is fine. We don't work that way. Mother has to be in a nursing facility, but that doesn't mean we will warehouse her. We are a part of her life, and we are the watchdogs over her care. So as frustrating as it is not to be able to call a doctor, I will persist, and I will continue to wedge myself into the process hoping to get the best care for Mother that is possible.
Saturday, March 23, 2013
Wonders Never Cease!
In visiting Mother at the nursing home, I also witness the decline of the other residents on the Alzheimer's Unit. In just the three years that Mother has lived there, there are only two people who were there when she arrived. Some have gone to other facilities, some have become bed fast and now live in the general population, and many have died. What is universal is the decline; although, the rate and presentation of decline varies.
I have written before about a resident who is a recent arrival. She has screamed and cursed a blue streak since her arrival unless she was asleep. She has had the most brutal mouth I have heard. Her conversation has been nothing but filth and anger.
Today when I arrived, several residents were sitting together watching TV. To my horror, Mother was sitting next to the cursing woman. I have to say, I approached with caution, because she can also start slapping and throwing things. I stood next to Mother and we began visiting. Suddenly, a sweet voice asked, "Would you like this chair? I can move over there."
Was this the same woman? Smile like a jack-o-lantern with missing teeth. Stringy hair. Skinny arms. Yes, but she was smiling and pleasant. I was taken aback, but brought up another chair so that I could face Mother and the woman.
I am not one to assign the word miracle to everyday events, but this comes very close to being a miracle in my book. The woman actually talked to Mother and me - nicely! She laughed and rambled around in the way dementia patients do. I looked through an old issue of Southern Living with Mother, and the woman peered over and made comments as we all three paged through the issue. Both Mother and the woman loved the photos of cakes and cupcakes. They got very excited and each picked the one she wanted to eat. They didn't talk to each other, but both talked to me. I was amazed.
It was a good day for Mother, but it was a wonder to me that the cursing woman, Marie, was sweet and smiling. Wonders never cease!
Saturday, March 16, 2013
A Wink and a Smile
There are days when I visit Mother that weigh so heavily upon me that I cry as I drive away. But once in a while there are extraordinary days. They are bright days when just a glimpse of Mother as she was shines through. Yesterday was one of those bright days.
It was warm and sunny, and Mother was willing to go outside. So I wiggled her into her sweater and slippers, and she perched her sunglasses on her nose and off we went to the patio. She shuffled down the hall hanging on to my arm as I balanced the glass of tea and the carrot cake cupcake. It takes a lot of energy for her to get out the door and down the sidewalk to the patio and bench, but she shuffled along and dropped onto the bench.
It was a good thing she was eating outside. She dug into the cupcake dropping crumbs of cake and drops of cream cheese icing all around her. She ate and turned her face up to the sun. Suddenly, she asked, "Where is your car?" I told her it was parked in front of the building. She asked again and yet a third time. Finally, she tilted her head and flashed her wicked, ornery smile.
"We could go get it." She bent closer holding the last bite of cupcake.
"Where do you want to go?" I asked.
"Judon."
(Judon is a small town about 150 miles away on which she has become fixated.)
I told her it was too far to go there. I couldn't drive there.
She leaned closer and in her best conspiratorial voice asked, "What about your sisters?"
I had to laugh. Through her dementia she was trying to work me, trying to convince me to pile her in the car and go for a joy ride.
If only I could have. But she is too unpredictable to take her by myself. I promised her that when to dogwoods were blooming we would go.
"Okay," she said the popped the last bite of cupcake in her mouth.
For just a moment, I had had as real a conversation as possible with Mother. She had had a plan, and she tried to use all of her old charms to get her way. That wink and a smile. That reaching for an alternative plan. It was a sweet moment even through the crumbs of cupcake and the smears of frosting on her face.
It was warm and sunny, and Mother was willing to go outside. So I wiggled her into her sweater and slippers, and she perched her sunglasses on her nose and off we went to the patio. She shuffled down the hall hanging on to my arm as I balanced the glass of tea and the carrot cake cupcake. It takes a lot of energy for her to get out the door and down the sidewalk to the patio and bench, but she shuffled along and dropped onto the bench.
It was a good thing she was eating outside. She dug into the cupcake dropping crumbs of cake and drops of cream cheese icing all around her. She ate and turned her face up to the sun. Suddenly, she asked, "Where is your car?" I told her it was parked in front of the building. She asked again and yet a third time. Finally, she tilted her head and flashed her wicked, ornery smile.
"We could go get it." She bent closer holding the last bite of cupcake.
"Where do you want to go?" I asked.
"Judon."
(Judon is a small town about 150 miles away on which she has become fixated.)
I told her it was too far to go there. I couldn't drive there.
She leaned closer and in her best conspiratorial voice asked, "What about your sisters?"
I had to laugh. Through her dementia she was trying to work me, trying to convince me to pile her in the car and go for a joy ride.
If only I could have. But she is too unpredictable to take her by myself. I promised her that when to dogwoods were blooming we would go.
"Okay," she said the popped the last bite of cupcake in her mouth.
For just a moment, I had had as real a conversation as possible with Mother. She had had a plan, and she tried to use all of her old charms to get her way. That wink and a smile. That reaching for an alternative plan. It was a sweet moment even through the crumbs of cupcake and the smears of frosting on her face.
Thursday, March 7, 2013
Oh, Mother!
It is difficult sometimes to remember Mother as she was - strong, in charge, running rather than walking, bright and sunny, ready to laugh, her interests wide as the sky. I look at her now, frail, virtually silent, her interests limited to the moment, her memory confused and clouded.
Now Mother is more like a small child who has found a new game and cannot be distracted from it. We sit on her bed side-by-side sharing a lunch sized bag of corn chips. She winks. Now we play her favorite game, noses and foreheads touching and looking into each other's eyes. She pulls back only long enough to grab a corn chip and chew. Back and forth we go.
Up close I notice even her once clear blue eyes are fading. They are becoming almost white in places like a pair of long loved and well worn pair of jeans. Only the edges of her eyes hold their true color. I wonder if they reflect the shrinking of her brain. Is there only a small rim left that holds her true self?
We touch noses back and forth for more than 20 minutes. "Oh, Mother!" she sighs and cuddles into my shoulder. I rock her and sing. My poor Mother child.
Now Mother is more like a small child who has found a new game and cannot be distracted from it. We sit on her bed side-by-side sharing a lunch sized bag of corn chips. She winks. Now we play her favorite game, noses and foreheads touching and looking into each other's eyes. She pulls back only long enough to grab a corn chip and chew. Back and forth we go.
Up close I notice even her once clear blue eyes are fading. They are becoming almost white in places like a pair of long loved and well worn pair of jeans. Only the edges of her eyes hold their true color. I wonder if they reflect the shrinking of her brain. Is there only a small rim left that holds her true self?
We touch noses back and forth for more than 20 minutes. "Oh, Mother!" she sighs and cuddles into my shoulder. I rock her and sing. My poor Mother child.
Monday, February 25, 2013
Unmarked Path
Mother is back. This last month has been a difficult journey as Mother recovered from the flu. Today she was talking again. I didn't think I would hear her be herself again, but she was back today. She knew me when I walked in the room, and she said my name. She commented on the TV show that was airing. I was amazed.
This journey with dementia is an unmarked path. Many have traveled the path before, and there are generalities that apply to many people, but each person's journey through dementia is different. I had no idea that the flu could cause such profound changes, and after three weeks I was losing any hope of Mother regaining speech or interest in the world. The virus that the rest of us throw off in a matter of days knocked her down completely. It led us into deep shadows. I was trying to process what kind of a life Mother might have in the depths of that shadowy place. It was bleak.
But now the path is brighter. She watches the activity in the hall and comments. She is interested in the advertisement on TV for Shirley Temple movies. She wanted to hold hands while we watched TV. She sipped her Coke and said, "Whoa, Nellie!" as the first sip stung her throat. She was back.
I'm profoundly happy to have her back. The shadow has been pushed back into the corners, but I know it is still there. Something else, some virus or fall, could send her back into the shadow and onto another unmarked path. Now even in the happiness of the moment, I have to acknowledge that at some point it may come again. So, I stack my mental cairns along the way trying to mark the path. Trying not to be surprised. Trying not to be frightened the next time it comes.
Saturday, February 16, 2013
Slipping Away
I never imagined that having a bout of flu could change Mother so drastically. In my naivete, I thought she would get well and everything would be the same. It is not. I thought she would still talk, as silly as her talk can be. She does not. I thought she would still roam the halls stealing snacks and drinking out of any cup she saw. She stays in bed.
Seeing Mother everyday, I am aware of the changes that come over her. Those changes have come subtly for me, but I see them. Mother's recovery from the flu has effected profound changes. They have shocked me, and I thought I was beyond shock.
For over a week Mother has spoken very little. I can stay for a few minutes or an hour. It doesn't matter. She is mostly silent speaking only with her eyes and her facial expressions.
"Would you like tea or lemonade?"
Nothing. She just stares.
"Would you like tea?"
A frown.
"Would you like lemonade?"
A big smile with lips pressed tightly together and stretched into a Cheshire cat grin.
No nodding. No turning of head. Mother stares at me closely. Her eyes widen in pleasure as she sips the lemonade.
I sit next to Mother on her bed, and we thumb through the seed catalogs together. I keep up a monologue about sweet peas and zinnias, sweet corn and tomatoes. I ask which one she likes and her gnarled finger stabs the page.
"Should I plant sweet peas this year?"
Mother smiles.
"What color?"
"Red." she whispers.
"I thought maybe white ones."
Mother snarels and squints.
Mother is still with me. She is following the conversation. She has an opinion. But I'm guessing about what she wants. Trying to read her face and her eyes, I'm guessing about what she is trying to say.
Perhaps this change in coincidental to the flu, but it is still devastating. Now Mother is locked further away. I hug her tight, but I feel her slipping further away from me and nothing I can do will stop it.
Seeing Mother everyday, I am aware of the changes that come over her. Those changes have come subtly for me, but I see them. Mother's recovery from the flu has effected profound changes. They have shocked me, and I thought I was beyond shock.
For over a week Mother has spoken very little. I can stay for a few minutes or an hour. It doesn't matter. She is mostly silent speaking only with her eyes and her facial expressions.
"Would you like tea or lemonade?"
Nothing. She just stares.
"Would you like tea?"
A frown.
"Would you like lemonade?"
A big smile with lips pressed tightly together and stretched into a Cheshire cat grin.
No nodding. No turning of head. Mother stares at me closely. Her eyes widen in pleasure as she sips the lemonade.
I sit next to Mother on her bed, and we thumb through the seed catalogs together. I keep up a monologue about sweet peas and zinnias, sweet corn and tomatoes. I ask which one she likes and her gnarled finger stabs the page.
"Should I plant sweet peas this year?"
Mother smiles.
"What color?"
"Red." she whispers.
"I thought maybe white ones."
Mother snarels and squints.
Mother is still with me. She is following the conversation. She has an opinion. But I'm guessing about what she wants. Trying to read her face and her eyes, I'm guessing about what she is trying to say.
Perhaps this change in coincidental to the flu, but it is still devastating. Now Mother is locked further away. I hug her tight, but I feel her slipping further away from me and nothing I can do will stop it.
Tuesday, February 12, 2013
Just an Angry Rant
I'm frustrated and my anger is on a slow simmer, but it threatens to boil over.
Mother's left hand is drawn into a tight fist. Her wrist swells. When the hand is opened, it is moist with the yeasty smell of decay. After two attempts to get therapy for Mother, the doctors orders were finally followed, and Mother began therapy for her hand. The results were so promising. She could open her hand and wiggle her fingers. She was even beginning to use the hand again on occasion. The swelling was gone.
Today her hand was balled up so tightly that I could not get her to open it. Her wrist was swollen and purple and the smell was sickeningly sweet. When asked her to try to open her hand, she opened the other hand. It was as if there was a mental disconnect between the fist and her brain. I massaged it, and slowly, slowly she got it open. I cleaned it and she moved her fingers. All of the progress has been lost. Her hand is the worst it has ever been. It is essentially useless.
This shouldn't happen. Once again I found myself in the nurse's office. Once again the head of therapy apologized for dropping the therapy. Once again she apologized for not notifying us. Once again she wanted to reevaluate. Once again she gave me the song and dance. Once again she is so sorry. No. I don't buy it. The problem is the same. The therapy was stopped. No one was notified. The functional maintenance plan was not followed. Mother was simply dropped. Is the head of therapy negligent, lazy, stupid or incompetent? The nurse was not happy, and I am angry.
This is my sweet Mother . She is completely dependent on someone else for everything except feeding her, and sometimes she needs help with that. How can someone simply drop a therapy that is working? How can doctor's orders not be followed? How can someone not do her job and keep her job? I am tired of excuses.
This is the part of dementia that is sickening. Someone takes advantage of the dementia patient. They take the money for therapy, then drop the patient as soon as possible. They can then charge for a reevaluation. Not this time. No more negligence. If I have to check up on the therapy department every day, I will. Mother has so little left. I want her to function the best she can and without pain. I just want to wrap her up and make sure she is safe and cared for. I will not let Mother be treated this way.
Mother's left hand is drawn into a tight fist. Her wrist swells. When the hand is opened, it is moist with the yeasty smell of decay. After two attempts to get therapy for Mother, the doctors orders were finally followed, and Mother began therapy for her hand. The results were so promising. She could open her hand and wiggle her fingers. She was even beginning to use the hand again on occasion. The swelling was gone.
Today her hand was balled up so tightly that I could not get her to open it. Her wrist was swollen and purple and the smell was sickeningly sweet. When asked her to try to open her hand, she opened the other hand. It was as if there was a mental disconnect between the fist and her brain. I massaged it, and slowly, slowly she got it open. I cleaned it and she moved her fingers. All of the progress has been lost. Her hand is the worst it has ever been. It is essentially useless.
This shouldn't happen. Once again I found myself in the nurse's office. Once again the head of therapy apologized for dropping the therapy. Once again she apologized for not notifying us. Once again she wanted to reevaluate. Once again she gave me the song and dance. Once again she is so sorry. No. I don't buy it. The problem is the same. The therapy was stopped. No one was notified. The functional maintenance plan was not followed. Mother was simply dropped. Is the head of therapy negligent, lazy, stupid or incompetent? The nurse was not happy, and I am angry.
This is my sweet Mother . She is completely dependent on someone else for everything except feeding her, and sometimes she needs help with that. How can someone simply drop a therapy that is working? How can doctor's orders not be followed? How can someone not do her job and keep her job? I am tired of excuses.
This is the part of dementia that is sickening. Someone takes advantage of the dementia patient. They take the money for therapy, then drop the patient as soon as possible. They can then charge for a reevaluation. Not this time. No more negligence. If I have to check up on the therapy department every day, I will. Mother has so little left. I want her to function the best she can and without pain. I just want to wrap her up and make sure she is safe and cared for. I will not let Mother be treated this way.
Monday, February 4, 2013
When Mother . . .
When Mother stopped planting her garden, we attributed it to old age.
When Mother became forgetful and had to write everything down and still forgot and became confused, we worried.
When Mother forgot how to use her bread machine, we packed it away and bought bread.
When Mother could not clean her house, we cleaned for her and hired a cleaning woman.
When Mother stopped cooking, we were thankful that she would not burn down the house, and we packed her refrigerator with homecooked food to be microwaved.
When Mother saw men in trees and lions in the grass and threatened to shoot them all, we took her 22 rifle out of the house.
When Mother refused to bathe and dress, we forced her to go to the doctor.
She cried and denied his diagnosis.
When Mother drove to the pasture instead of going to town as she intended, we took away the car keys.
When Mother could not remember to take her medicine, we bought an automatice pill dispenser with an alarm.
We found pills all over the house.
When Mother left her hair dryer going in the bathroom while she sat on the porch, we looked at each other and wondered about a nursing home.
When Mother forgot to eat anything but chocolate, we cried.
When Mother became belligerent and fearful in the home she loved, we moved her to a nursing home close to us.
All these things and more we could do.
Now, her memories of family are fading. Now she can not find her room. Now she is not aware of her sometimes public nakedness. Now there is often vacancy in her eyes.
Now there is littlw we can do. We simply weep and hold each other by the hand.
When Mother became forgetful and had to write everything down and still forgot and became confused, we worried.
When Mother forgot how to use her bread machine, we packed it away and bought bread.
When Mother could not clean her house, we cleaned for her and hired a cleaning woman.
When Mother stopped cooking, we were thankful that she would not burn down the house, and we packed her refrigerator with homecooked food to be microwaved.
When Mother saw men in trees and lions in the grass and threatened to shoot them all, we took her 22 rifle out of the house.
When Mother refused to bathe and dress, we forced her to go to the doctor.
She cried and denied his diagnosis.
When Mother drove to the pasture instead of going to town as she intended, we took away the car keys.
When Mother could not remember to take her medicine, we bought an automatice pill dispenser with an alarm.
We found pills all over the house.
When Mother left her hair dryer going in the bathroom while she sat on the porch, we looked at each other and wondered about a nursing home.
When Mother forgot to eat anything but chocolate, we cried.
When Mother became belligerent and fearful in the home she loved, we moved her to a nursing home close to us.
All these things and more we could do.
Now, her memories of family are fading. Now she can not find her room. Now she is not aware of her sometimes public nakedness. Now there is often vacancy in her eyes.
Now there is littlw we can do. We simply weep and hold each other by the hand.
Thursday, January 24, 2013
Leaving the Ship
There is a new woman at the home. She is in the first stage of adjusting to living in a nursing home. She is confused, and she wants to leave. She is wandering the halls asking everyone if she is "free to leave the ship." Another resident replies," This isn't a ship. This is a building. Your folks put you here, and you have to stay until they come and take you out." The woman looks blank and wanders toward the end of the hall and rattles and shakes the door saying, "I have to get out of here."
I remember that stage well. Mother was more angry than the new woman. Not only did she rattle the door, she picked up chairs and threw them. She tried to break the glass. In the first place she lived, she tried to climb the fence in the outside area. She pulled a patio table to the fence, climbed on it and tried her best to get over the wrought iron fence. Thank goodness Mother was too short to do so. When she first arrived where she now lives, she did the same thing. She couldn't climb over an outside wall, but she tried to climb over a wall in her unit that doesn't quite go to the ceiling and adjoins the main dinning room. She stood on the sofa and tried her best to climb the wall desperate to escape.
At first, we tried to take Mother out of the home for short drives. We thought it would ease her transition. She got so confused when we did. Once she thought she was Vietnam. Often she thought she knew the people in every car that passed us and it would upset her. Sometimes she thought we were in a different town. Finally a nurse told us we were not doing her any favors. It was easier on her to just stay in the home. It was less confusing. In our own way, we were denying that she was on that ship that only sailed farther and farther away from normal life.
No is "free to leave the ship" once they are in the Alzheimer's unit. It simply sails off into the fog. No amount of beating on doors or throwing furniture or climbing walls can facilitate an escape. And no matter how much we want to, even the "folks" can get you out. It is a one way trip.
I remember that stage well. Mother was more angry than the new woman. Not only did she rattle the door, she picked up chairs and threw them. She tried to break the glass. In the first place she lived, she tried to climb the fence in the outside area. She pulled a patio table to the fence, climbed on it and tried her best to get over the wrought iron fence. Thank goodness Mother was too short to do so. When she first arrived where she now lives, she did the same thing. She couldn't climb over an outside wall, but she tried to climb over a wall in her unit that doesn't quite go to the ceiling and adjoins the main dinning room. She stood on the sofa and tried her best to climb the wall desperate to escape.
At first, we tried to take Mother out of the home for short drives. We thought it would ease her transition. She got so confused when we did. Once she thought she was Vietnam. Often she thought she knew the people in every car that passed us and it would upset her. Sometimes she thought we were in a different town. Finally a nurse told us we were not doing her any favors. It was easier on her to just stay in the home. It was less confusing. In our own way, we were denying that she was on that ship that only sailed farther and farther away from normal life.
No is "free to leave the ship" once they are in the Alzheimer's unit. It simply sails off into the fog. No amount of beating on doors or throwing furniture or climbing walls can facilitate an escape. And no matter how much we want to, even the "folks" can get you out. It is a one way trip.
Saturday, January 19, 2013
Sunny Days
I grieve for Mother and her condition most on sunny days in winter. She is beyond knowing one day from another; she is beyond caring about where she is unless it is at the table or in her bed. Her world is so contracted that even when she looks out the window, which she often does, she sees the grass and the trees and the birds as if they were photos. There is no connection to them, and this is such a change from the Mother that used to be.
On warm winder days, Mother would sit on her front porch and watch the birds. She had an old pine cone that she used as a suet feeder. She would make a concoction of lard and peanut butter and roll it into small balls and stuff it between the spines of the pine cone. The birds loved it, and she would spend hours watching them eat at the pine cone and at the feeders scattered over the yard. She could identify each bird, and by reading and watching, knew their habits and their calls. Huddled under the wool patch worked quilt, she would drink her tea and watch and enjoy. The birds were a joy for her. Being outside on her porch was essential for her.
I grieve those times for her. Now she looks out the window and says, "I saw a bird." She is afraid to be outside most of the time. "Too scary," she declares. She no longer hallucinates about men in the trees, and lions and snakes in the grass, but she has also lost her enjoyment of the outdoors, the sunshine and the birds on a sunny winter day.
On warm winder days, Mother would sit on her front porch and watch the birds. She had an old pine cone that she used as a suet feeder. She would make a concoction of lard and peanut butter and roll it into small balls and stuff it between the spines of the pine cone. The birds loved it, and she would spend hours watching them eat at the pine cone and at the feeders scattered over the yard. She could identify each bird, and by reading and watching, knew their habits and their calls. Huddled under the wool patch worked quilt, she would drink her tea and watch and enjoy. The birds were a joy for her. Being outside on her porch was essential for her.
I grieve those times for her. Now she looks out the window and says, "I saw a bird." She is afraid to be outside most of the time. "Too scary," she declares. She no longer hallucinates about men in the trees, and lions and snakes in the grass, but she has also lost her enjoyment of the outdoors, the sunshine and the birds on a sunny winter day.
Sunday, January 13, 2013
Vinegar and Brown Paper
Jack and Jill went up the hill
To fetch a pail of water
Jack fell down
And broke his crown
And Jill came tumbling after.
Up Jack got
And home did trot
As fast as he could caper
He went to bed
And mended his head
With vinegar and brown paper.
When I was a child, Mother would gather me in her lap and read the Mother Goose nursery rhymes to me. I learned them all by heart with her reading them and talking about them. We knew them all: Peter, Peter Pumpkin Eater, Hey Diddle, Diddle, Mary, Mary Quite Contrary, The Old Woman Who Lived in a Shoe and on and on. I loved those moments nestled in Mother's arms, laughing and talking and enjoying the rhyme and rhythm the love and laughter.
Mother can still say many of the nursery rhymes with me. We site close together these days with my arm around her shoulders, and we say the rhymes together. When she can't remember, she watches my mouth and says the words just a split second after I do compensating for her loss of memory. But sometimes she remembers the rhyme all by herself. She will throw her head back and yell the line in pure delight, laughing as we used to do those years ago.
But as I leave the home, the moment of sharing still with me, some of the rhymes haunt me. Humpty Dumpty falling off his wall and all the King's horses and all the King's men can't put Humpty Dumpty together again. The dementia. No one can put Mother together again. So many parts of her mind are shattered beyond repair. And much like Jack, even modern medicine seems like vinegar and brown paper in the face of Alzheimer's. It is virtually palliative care, long term and sad. A patch that gives the impression of something being done, but the injury is way beyond vinegar and brown paper. But that is all we have, so sometimes, like one of the King's men, I come with only a rhyme to try to salvage a bit of memory for Mother. I know it won't stop the progression of the disease, but time together, sharing something of the past is my vinegar and brown paper. My hopeless attempt to keep Mother from shattering further.
To fetch a pail of water
Jack fell down
And broke his crown
And Jill came tumbling after.
Up Jack got
And home did trot
As fast as he could caper
He went to bed
And mended his head
With vinegar and brown paper.
When I was a child, Mother would gather me in her lap and read the Mother Goose nursery rhymes to me. I learned them all by heart with her reading them and talking about them. We knew them all: Peter, Peter Pumpkin Eater, Hey Diddle, Diddle, Mary, Mary Quite Contrary, The Old Woman Who Lived in a Shoe and on and on. I loved those moments nestled in Mother's arms, laughing and talking and enjoying the rhyme and rhythm the love and laughter.
Mother can still say many of the nursery rhymes with me. We site close together these days with my arm around her shoulders, and we say the rhymes together. When she can't remember, she watches my mouth and says the words just a split second after I do compensating for her loss of memory. But sometimes she remembers the rhyme all by herself. She will throw her head back and yell the line in pure delight, laughing as we used to do those years ago.
But as I leave the home, the moment of sharing still with me, some of the rhymes haunt me. Humpty Dumpty falling off his wall and all the King's horses and all the King's men can't put Humpty Dumpty together again. The dementia. No one can put Mother together again. So many parts of her mind are shattered beyond repair. And much like Jack, even modern medicine seems like vinegar and brown paper in the face of Alzheimer's. It is virtually palliative care, long term and sad. A patch that gives the impression of something being done, but the injury is way beyond vinegar and brown paper. But that is all we have, so sometimes, like one of the King's men, I come with only a rhyme to try to salvage a bit of memory for Mother. I know it won't stop the progression of the disease, but time together, sharing something of the past is my vinegar and brown paper. My hopeless attempt to keep Mother from shattering further.
Friday, January 4, 2013
Finger Exercises
Stand up like soldiers! Bow down! Stand up straight! Bow down!
That's the routine I try to get Mother to do with her left hand. It is clenched tight most of the time, and getting her to open it and move her fingers is difficult. The doctor has ordered physical therapy and a brace for her, but so far neither has materialized. In the meantime, I try to think of ways to move her hand that will help her use those muscles before they totally freeze up.
The first step is getting her to open her hand. I am not sure how much feeling she has in it because I can tap her left hand and ask her to open it, but it is the right hand that she moves. Often her left hand is purplish and swollen when I visit. Once I can get her to open it, I usually place it opened on my knee and gently rub the top of her hand and her wrist. Sometimes she says it feels good; sometimes she says it hurts. I will have her flex it gently, and I help her. Occasionally, the hand smells. It is susceptible to yeast infection if she always keeps it closed. I wash her palm and file the nails so that they are very short.
Once she has it opened, she will use it a bit, so we begin with straightening the fingers (soldiers tall) and then bending them at ninety degrees (bow down). She loves the soldiers tall and will try her best to get them vertical and straight. Next we press the finger tips of the left and right hand together. I tell her to make a steeple of her hands. She smiles and does this, but she likes it best when we do it together, her left hand pressing against mine. To her it is like a tug of war, and she presses her lips together and pushes and tries to push my hand back. She is strong, and although she has little flexibility, she can push with strength!
I also work on fine motor skills by having her touch each finger to her thumb. This is difficult for her, and she often uses her right hand to help her. Then I have her slide her thumb down each finger. This is almost impossible for her to do. Just in the last month she has lost a great deal of fine motor skill in that hand.
I tried having her squeeze a stress ball, but she wants to eat it and tried to get a big bite out of it. So no more stress balls. She can squeeze an aluminum drink can in half, so I am not concerned about her squeezing ability. I am more concerned that she use her fingers.
It is one more thing we do to keep her going. To keep her from slipping away bit by bit. I know it is a losing battle, but it is one I am willing to fight. So soldiers tall!
That's the routine I try to get Mother to do with her left hand. It is clenched tight most of the time, and getting her to open it and move her fingers is difficult. The doctor has ordered physical therapy and a brace for her, but so far neither has materialized. In the meantime, I try to think of ways to move her hand that will help her use those muscles before they totally freeze up.
The first step is getting her to open her hand. I am not sure how much feeling she has in it because I can tap her left hand and ask her to open it, but it is the right hand that she moves. Often her left hand is purplish and swollen when I visit. Once I can get her to open it, I usually place it opened on my knee and gently rub the top of her hand and her wrist. Sometimes she says it feels good; sometimes she says it hurts. I will have her flex it gently, and I help her. Occasionally, the hand smells. It is susceptible to yeast infection if she always keeps it closed. I wash her palm and file the nails so that they are very short.
Once she has it opened, she will use it a bit, so we begin with straightening the fingers (soldiers tall) and then bending them at ninety degrees (bow down). She loves the soldiers tall and will try her best to get them vertical and straight. Next we press the finger tips of the left and right hand together. I tell her to make a steeple of her hands. She smiles and does this, but she likes it best when we do it together, her left hand pressing against mine. To her it is like a tug of war, and she presses her lips together and pushes and tries to push my hand back. She is strong, and although she has little flexibility, she can push with strength!
I also work on fine motor skills by having her touch each finger to her thumb. This is difficult for her, and she often uses her right hand to help her. Then I have her slide her thumb down each finger. This is almost impossible for her to do. Just in the last month she has lost a great deal of fine motor skill in that hand.
I tried having her squeeze a stress ball, but she wants to eat it and tried to get a big bite out of it. So no more stress balls. She can squeeze an aluminum drink can in half, so I am not concerned about her squeezing ability. I am more concerned that she use her fingers.
It is one more thing we do to keep her going. To keep her from slipping away bit by bit. I know it is a losing battle, but it is one I am willing to fight. So soldiers tall!
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