I was sitting in one of the Wassily chairs. The squirrels appeared suddenly against the summer sky.
2 frisky teenage squirrels about to make a 3rd.
I was on the phone with my husband. He goes to work in another state on Tuesday, Wednesday and Thursday, and we stay in touch by phone and texting. He is here from Friday through Monday, and that too has not been a piece of cake. Our relationship has been tested to the max. I’m not really a partner any longer. I realize that. I’m his wife still, but I have Alzheimer’s and my neuropsychiatric symptoms are more than either of us can handle.
My dear husband has become a care partner and is stressed to the max with the relentlessness of it. He has so much to do to care for me, and he doesn’t want this responsibility. He is not a wife. He is a husband who wants to lie down and rest when he comes home. Instead he cooks and prepares food for me for the next day when he won’t be here and is at work. I am grateful. I must be even more grateful. I’ve lost many of my ADL’s (activities of daily living), and the ability to cook or follow a recipe is one of them. I do not go food shopping alone except for one or two times in which I bought 3 items, one of which was flowers. Supermarkets with bright lights and their cacophony of sounds, are now too much for me to be in, particularly if I’m alone. I can write, but I can’t cook or follow a recipe. That is how weird this disease is.
There is an observer inside me who is seeing how this is happening to me. Seeing how I can’t sequence and order my thoughts and actions. How I forget what I am doing and go from one thing to the next, leaving a trail of incompleted tasks. I also see the regression, the outbursts, the panic and anxiety. As a result of this horrible disease, I cannot be an independent adult in this world any longer. I am aware of it. I have been watching the process unfold.
Writing this blog is a discipline to help fight this predatory brain disease. As long as I can post here, I am still here.
Two weeks have passed since I took the photo of the squirrels, and I am still parked here writing this post. I do not have much oomph as they call it. My prana is dissipating. My husband and daughter and just about everyone says it’s depression. If only it were that simple. At this point, it’s a changed brain I am living with. The master of my body is my brain, and mine is disappearing. Wild mood swings, panic, anger, mournful grieving and yes, depression, are all part of this.
Composition with Squirrels.
Anyway, it’s neat that even in my condition, which is relatively progressed in the having lost her mind department, I could still have a modicum of fun by myself. Since I am sadly left to dement alone, no buddies around to share good times any longer, I have to find ways to amuse myself.
Finally, I had to move out of the Wassily chair with its 70 degree angle. Day after day, I sat and it was killing my back and causing cramps and spasms at the tops of my thighs.
It’s not laziness I am told by the expert with the joyful name. It’s a product of having this disease, she says. MCI and early Alzheimer’s make me sit. This is a bi-product of the way that the disease is affecting me.
My life is irrevocably changed. It doesn’t feel like a life now. I am home alone most of the time. I sit a lot. I play cognitive games on my iPhone to help me focus. I play them for hours like an addicted adolescent. I am extremely lonely during the day when my husband is not here. I am also extremely lonely when he is here asleep. I am extremely lonely in this disease. I have lost most of my friends. All of my relationships have changed since I began losing my mind. The relationship with my adult kids is forever altered by what has happened to me and how I have behaved since the symptoms began.
I know this now. I did not see it then, not at the beginning, but I now understand that my behaviors have been insane. I look back and retrieve memories from the progression of this. The initial depression that was more intense than ever before, the unravelling anxiety, that would not quit. The behaviors followed the moods. The impairments arrived later. I’m two years into the symptoms.
They say if you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s. But have I become my mother at a much younger age. Helpless, dependent, insane?
She did not have younger onset Alzheimer’s, but was never really diagnosed. She died in 2001 two weeks before 9/11. Alzheimer’s was not a word we used to describe her behaviors. She was crazy and she got crazier and meaner as time went on. Late in the process, I heard her call my father by her deceased cousin’s name. I knew she was in her own world, but confusion came late in her dementia.
She used to say in Yiddish, “der zelba, der zelba”, which translates into the same, the same. Everything was the same, she never went anywhere. No wonder it all seemed the same and she was depressed. She was bored. Boredom can lead to depression. She was in a bad relationship with a man who she was dependent on to care for her. Her life was empty. She hardly read. She survived Hitler and Stalin. She had few social skills and after the move to Florida from New York City, and she really didn’t have friends. In her late 70’s and early 80’s, she would get up at in the middle of the night and pace and talk and talk, while everyone was trying to sleep. Who was she talking to? I had to hold my ears to block out the sound to get any rest.
The rich inner world of her dream life was one thing I did love about her. The seer. That made me feel her depth.
In the end she was a fragile old lady with dementia, and she did not have a chance once they started the Haldol. The Haldol pushed her into the far edge of late stage. She became a vegetable I would say, but she was still in there I know now. One time I brought my daughter to Florida and we visited her at the hospital together. My daughter was about 8 years old then. My mother had not uttered a word for months, but she called out my daughter’s name when she saw her. She was in late stage for over 2 years. Then she contracted pneumonia, and that was that. It was horrible. It was extraordinarily horrible. I suspect now that she was in what one would call very late stage Alzheimer’s.
A woman I met last year in California, told me about her own mother who had Alzheimer’s. How she was crazy as a beezle bug, and never slept at night. I seem to be following in those kind of footsteps. She said her mother would stand in a doorway all night yapping. I am on my computer for much of the night, trying to make sense out of what is happening to me.
I am progressing. I am aware of, and see the thing unfold. It’s a monster in my brain, shrinking my ability to negotiate with the world.
My life is irrevocably changed.
I am home alone. I play cognitive games on my iPhone. I have no discipline. No routine schedule. My appetite and sleep are deranged. I am hungry late at night but not during the day. I get tired, but not so much as to actually go to bed until well past 1 am. Sometimes as late as 3 am or later.
I am dementing and I am watching myself disappear.