“There was a story inside me that demanded to be written. I didn’t want to write it, but it wouldn’t let me write anything else until I did”. That was a response from an author when asked about the subject of her new book, which was quite different from her usual genre. I no longer recall who the author was or what the book was about but the response stuck with me.
Ideas churn in my mind but when I try to let them out, the pathways are blocked. I struggle through one or two paragraphs and then come to a grinding halt; totally stymied. A topic floats to the surface but I push it back down. I’m not going to write about that; it’s too personal; I might hurt someone’s feelings; I might embarrass my family. Instead, I turn away from my keyboard. I try less and less often because the same thing happens. I start to write and run into a roadblock. I try to go around it but there are no breaks in the barrier. Then I agreed to write a review for one friend and a testimonial for another, thinking that it would be easy since I wasn’t really writing for myself. Wrong. This time I couldn’t just give up so I persevered and managed to complete them even though it took me a week to finish a few paragraphs and I wasn’t really satisfied with the end product (apologies to Kristine and Dawn).
Then there are the queries from friends about why I have stopped writing [I’m always amazed to find that people read what I write] and others who have said “you should write about that [whatever topic was under discussion], you do it so well”. In both cases I would mumble something about being really busy and work being crazy and change the subject.
It’s been four weeks since I wrote the above and on the cusp of the New Year I’ve decided that yes I need to let this story out. I’m in limbo, and it’s a bad place to be; neither moving forward nor backward; stasis, stagnation, death.
In January 2013 my mother was diagnosed with Alzheimer’s. It wasn’t a surprise given the symptoms that my sister and I had observed over the past two and half years; increasing in frequency and severity. On the other hand, we kept looking for other reasons because there was no family history of dementia or Alzheimer’s. My maternal grandmother had lived to 101 ½ without anything other than normal forgetfulness. My maternal grandfather died in an accident but he had 1 sister and 3 brothers that lived into their late 90s without mental degeneration. But after a couple incidences during Christmas 2012, we could no longer ignore the obvious. Nor could we allow my mother and step-father to ignore what was going on. A visit to a specialist confirmed the diagnosis. A battery of cognitive tests came back and we learned where she sat on the degenerative continuum; much further than we had anticipated.
Another Christmas has come around and I’m here again. In person, the continuing deterioration is even more apparent than it is on the phone. Not only are her short term memory and language skills deteriorating, but she is starting to forget things that were part of her life for many years. Some things that she thinks she remembers never happened. Other things that happened many times she thinks she’s never done. There is no way to predict what she’ll remember and what she won’t. We can be in the middle of a conversation and all of a sudden she’ll be angry because I’ve said something that she doesn’t remember. She thinks that we are trying to fool her or that we think that she is lying. It’s exhausting. I’m afraid to bring up any topic because I don’t know when I’m going to step on a land mine. Because her verbal proficiency is decreasing when she asks a question we sometimes don’t understand what she’s asking. If we ask her something to clarify she is immediately impatient and angry. In her mind, what she asked is perfectly clear and she thinks we’re ganging up on her and trying to make her look foolish. It’s exhausting and I was only there for 4 days.
I’m truly more worried about my step-father’s health than about my moms. Physically, she’s healthy but he has several health issues that aren’t being taken care of because he’s taking care of her. Not surprising given the nature of the disease. The toll it takes on the caregiver is enormous. But will they accept help? No. “We aren’t at that point yet,” they say. “We’ll wait until something happens,” they say. Right…when is that? After she has another accident because she is still driving? After he has a heart attack from the stress? Or an asthma attack so bad he lands in the hospital?
Worry about her, worry about him, worry about myself and my sister. According the current body of research, the vast majority of Alzheimer’s cases are attributable to genetics, and only a small number to environment. My mother was 11 when WWII started, living in Antwerp, Belgium. Given the lack of dementia in the family, is it most likely that growing up during the war is the cause? Is that just a vain hope because if it’s genetics then I have to face the fact that my sister or I could be next?
Every time I have trouble remembering something, I wonder: “Is this starting to happen to me?” I was ordering pizza yesterday and couldn’t remember the word menu. Was my first thought the fact that I had been taking Oxycodone every 4 hours for the past two days, having just had foot surgery? No, my first thought was Alzheimer’s.
And then there is the guilt. I already took care of my grandmother. I don’t want to do this again. No, what I don’t want is to have to do it like this: crisis to crisis. I want my mom and step-father to make and implement a plan for dealing with what’s to come. Just moving to a smaller residence where they didn’t have to worry about maintenance or cleaning would relieve a lot of pressure on both of them, and on us. I brought it up again but no go. They each say the other won’t do it. It’s maddening. They are a well-rehearsed team that knows how to fool the audience: Alzheimer’s 2; Home Team 0.