This blog post is a series about my family’s history of Alzheimer’s through three generations of women. This history is as I have experienced it, and continue to experience it. No, I have not been diagnosed with this disease myself (fingers crossed), but the signs have crept up to my eldest sister, nine years older than I, and tapped her on the shoulder. So, this is the story I want to tell in these blog posts, as well as talking a little bit about the blog to book, blog to memoir process. I am going to switch to italics for the memoir post part and stick to regular text for the writing process part.
The problem with reading and writing is that readers think that writing is like reading, done in a certain order, a logical order or chronological order. Yet, in fact, writers do not have to write things in the same logical order that the finished product will be read in.
I counsel writers to always write the scene that is nagging them the most, even if it comes later in the story. This way you will be forced to write up to that scene so it can be very motivating although that’s not why I advise to do it. I suggest because the scene is nagging you for a reason. In some ways it is the soul of the story. And this may lead to the important aspect often forgotten in Memoirs, the theme.
Before we go into theme I am going to commit to writing my Alzheimer’s blog post. After that, I’m going to use that post to drag out possible themes. Remember the post itself will be in italics.
I don’t know what it is like to have Alzheimer’s, in fact people who have it, often don’t know what it’s like. I think it is somewhat like dreaming. When asleep and dreaming you simply accept the reality of the dream, nothing seems abnormal (unless you have rare moments of what they call lucid dreaming). Only people on the outside watching us sleep, know we are dreaming. As I said, I don’t know what it is like to have Alzheimer’s, but I can tell you what it’s like to be a caretaker.
The first thing I can tell you about being a family member or caretaker of one who is undergoing Alzheimer’s or dementia is that it is your other, healthy, sound of mind, family member caretakers that are often more difficult to handle than the diagnosed person. They are also a huge blessing because you are not doing this alone.
You will find out quickly several things about your siblings and other family members. If you didn’t already know, who are the people who can’t or won’t do caretaking to save their lives, you will now know. You’ll know who is good at the finances, who is patient, who is controlling, who gets stressed easily, and who doesn’t, who has good ideas, who can deal with bureaucracy, and generally who brings what to the table. Warning: someone, or a few people, or perhaps even everyone will feel resentment at some point that they got the lousy job and are handling it without enough or any support.
More recently I have had someone to vent to outside the family who really gets it, because after I vent, she vents too. My best friend’s mother has full on dementia now.
“She walked outside without her top on yesterday,”
“She walked outside without her top on yesterday,” she tells me one day, about her mother, topping (no pun intended) whatever stories I have about my sister who is forgetful, definitely in cognitive decline, but more or less functional. She is not yet under delusions, or exhibiting wildly inappropriate behavior (anymore than usual), though bathing, cleaning and cooking are off the table as far as being performed regularly or at all. Yet A and I talk more about the family’s behaviours than the people diagnosed.
Her father is in denial about what is needed, even though he can see his wife is not herself any longer and things are rapidly declining. Her brother can’t deal with any of it either. It’s up to her, her sister and her brother-in-law.
A is the patient one. Her sister is good at the bureaucracy and getting things done, but gets stressed out. Her brother-in-law is good with her father and managing others stress.
“We have an opportunity to get her into an assisted living in her old neighborhood,” I tell A the latest turn of events for my sister. My other sister, T, the get things done, but heavy on the controlling side one, is determined that this is going to happen. She made it happen. Problem is, just like with the car, J is in no way ready to do this.
T keeps comparing her to our mother whose resistance was easy to push through, but I don’t see a similarity at all. If I try to voice this, I get a ton of opposition, and residual resentment. The problem with controlling people is they can’t let others do things (because they won’t do it right), but they are okay to be resentful that they are doing it all and “getting no help”, according to them. Ugh. They cannot see how these two things effect each other. They just want you to do exactly as they say, rightly or wrongly, AND there is no right and wrong in dealing with this kind of family situation. It is more a question of balancing interests.
T thinks that she has Js best friend and roommate, who is a great companion but not the best caretaker, on board with the assisted living idea. But like many people surrounding T he nods and agrees rather than feeling the scorch of disagreeing, he is not going to force his friend to do anything she doesn’t want to do.
I am stuck in the middle. I can see the assisted living situation would be great and in a much better neighborhood (the maids I arrange to clean their apartment are afraid of to come or go when it is dark), but it means moving J from living with a friend and precious kitty cat to neither, and that’s important. She knows people in the ‘hood but it isn’t the same. I am stuck sympathizing with all.
Ultimately, while J still has faculties, however diminished, it is her say. T can’t do a thing. She did try, even pushed, but J is not ready. The roles will keep playing out, as they do.
A is in the same boat with her Dad. He has the say so for his wife, until he is ready, not a thing to be done but move in increments.
Themes. At some point I always brainstorm themes in my writing, fiction or non fiction. Often I am well into it, up to halfway, before I do this. I know it will make the work better if I do find one main theme. There are always more than one. This post I find:
Family dynamics
Roles
Conflict
Stress
Control
Dignity
Independence
Family
Teamwork
Ego
Living
Quality of life
Negotiation
Life skills
Appreciation
Psychology
Resentment
History
Support
Can you find any more? If so, please add in the comments. Next post, I will talk about what to do with Themes.
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