A diagnosis and searching for support.

It’s ironic that I’ve feared that I will lose my job, while what I am really losing is my mind.

I’m losing my mind and cognition, with the knowledge that it leads to further loss and sooner death.

In February 2017, I got the diagnosis from a well known neurologist that specializes in Alzheimer’s disease. It’s the second neurologist I have seen, and this time the diagnosis was made with an FDG PET CT, with a radioactive tracer. The first neurologist said I had the pattern of classic Alzheimer’s in October 2016. He ordered a Spect scan but wanted to do a lumbar puncture to see the tau’s. I guess I was lucky to have made the appointment with the second neurologist to avoid that gruesome intervention in my spine.

Hey doc, how long have I got?

At the last appointment which was a week ago, June 12, 2017, I complained about the many losses, whining with the fear that I am progressing quickly, and have progressed quickly in a year. The doctor stopped me in my tracks.

I’ve seen death in a year from Alzheimer’s, he said.

If I could write it, instead of live it, this would have made a good short story or maybe a novel, but there’s already Still Alice, the film based on Lisa Genova’s 2007 bestselling novel of the same name. I watched Julianne Moore’s academy award winning performance before anything was happening to me. That was 2014. This was before the symptoms. Alzheimer’s seemed so remote to me as I watched that film when it came out about 3 years ago. Little did I know that I had the disease in a pro-dromal state. Then I watched it again this year. Fiction became reality.

The symptoms started with major depression. I was 61. I’ve read that 40 percent of people with Alzheimer’s have depression. But I had no idea that depression and Alzheimer’s are related.
There had been so many depressions. The last before this was 2012 and I was put on Paxil and Welbutrin with a short course of Klonopin. I had been working hard but weight training. I had weaned myself off by replacing the drugs with better habits, exercise and chiropractic. I was pushing myself but felt stronger than I had in a long while.

The famous neurologist #2 who I see, has seen it all and is a little jaded about this horrible disease. I received the diagnosis over the phone. I asked why this happened to me. He said you reached a threshold.

At age 63, I am struggling with a complete change in myself. I’m trying to function despite lapses in memory, and degraded function. Some days are worse than others. When I have a bad day as I had today, I think I am not going to be able to withstand another one.

Here are some of the changes in me:

  • I’ve been terrified to be alone since before the diagnosis;
  • I’ve been unable to get out of bed and get dressed without support.
  • I have experienced the near complete loss of appetite, yet I eat when food is put in front of me.
  • I have become like a child, and my husband is now my caregiver and prepares most meals for me.
  • I’ve been unable to take care of myself alone, go food shopping, normal everyday stuff. Activities of Daily Living.

I’m well aware of how if I did not have the support of my husband, I would surely die sooner. This is my life now.The stigma of the disease and the experience of it, as I muddle through each day, taken care of by my caregiver husband, living a lie professionally because of the stigma of the disease; unwilling to give up the fight for my life.Since September, I showed up for all my classes, even when I was sick. But I would not have been able to do it without a great deal of support. It was only through sheer will, and the desperation that I would not have a salary, and no professional career, if I stopped working, that to continue to work at the school I have taught at for the better part of twenty years, and pretend that I was okay. I put whatever will I had left into pushing myself to the task.I see that the students have been un-enthused by my flatness and joylessness (trying to hide my anxiety). I would race out of the classroom and rush home between classes, avoiding contact with my colleagues, many of whom I have known for decades.

I can’t tell anyone what is going on with me, is the justification for my quietness and withdrawal. I’ve read that this social withdrawal happens when the person with Alzheimer’s is aware that they have changed, when names can not be recalled (which has happened so many times now, for instance sitting next to a colleague at a faculty meeting, who I’ve known for years, and thinking about how I can’t remember her name, and having to look it up in the school directory).I had an excellent support system as a work around- a home health aide, who made sure I ate, because I am now unable to prepare meals for myself or food shop. I haven’t been able to go alone to the market for a year and a half or longer. My husband does all the food shopping.

The aide would make breakfast, help me to get to my classes, walk me part way, carry my book bag, make sure I had water and snacks and that my notebooks were inside with pencils and pens. I can see the regression and how I had become a child.

I resented her, this woman who was used to taking care of Alzheimer’s patients in nursing homes. What the hell had happened to me that I needed her? She told me stories about people who no longer know that a sink is a sink. She had never met anyone so early in the disease, someone who was struggling to function in the life they had known for decades. She would watch me try and compose paragraphs, continually crossing out words, correcting misspellings. She would warn me that if I did not push myself, I would end up in bed unable to get up.

I fought to keep going, but the strain was great and I ended up firing this woman, despite needing her support. Finally the frustration of what I have been going through was too much. My anger and rage spilled out on her. She threatened to call the police. I knocked the phone out of her hand. Alzheimer’s people lose it sometimes. I’ve lost it a lot.

3 thoughts on “A diagnosis and searching for support.

  1. I am so sorry your life has been turned upside down. As a fellow traveler I enjoyed (?) reading your description of the new life. Hope to read much more of your journey.

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  2. I totally understand how you feel here Minna-it does make you feel scared being alone because people might walk out of the house and forget where they are and wonder if they are ok and where they have gone. I also totally understand why you don’t want to go into residental care-it’s horrible being in residential care so young surrounded by a bunch of elderly people-i always say to myself “the younger you go into residential care, the harder it is to make some friends”. Most people who go into residential care generally hate it-my Grandad goes in to respite care every few months to give my 84 Grandmother a break-he is 87 and he hates respite care and doesn’t understand why he is in there and always says “Where’s Dinah”? “Why has she put me in this place” although when i visited him last time i was taken abach because he was watching a film and socialising with the other residents-that made my day and it made me feel very blessed. I suppose when Dementia patients illness progress they probably like care more because the sense of “home” is less and they are starting to thing that…is…home. The place where my Grandad goes is wonderful with a wonderful sense of community and all the residents and there families are really friendly and lovely(even though i have only met them once)but they are people who i would happily come friends with and socialise with. Best wishes, Sam

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