12.20.15

There are tipping points. Up until the tipping point, the resistance you have as a witness to this disease is amazing. My mom's executive function is pretty much shot; she's an unreliable narrator. That means, among other things, that boundaries that were firm and seemingly permanent, evaporate. Issues of privacy and respect have to be addressed. I am stepping into her space, but I do so by asking permission each step of the way.

I don't know if you've ever heard the bit by Larry David where he tells of attending some party when he was writing for SNL. David is a comic's comic. They were at the bar watching all these idiot men they knew coming in with beautiful women and bemoaning their single state. David finally yells out, "My name is O'Banyon; I need a companion!" I was listening to that with my mom and it broke us up. I said to her, that line would win me over, but I'd yell back, "My name is O'Toole and I think you're a fool!" Anyway, back to the privacy and permission...when I need to get in and help her in ways I haven't had to before, I now say, "I'm O'Banyon, your companion." It makes her laugh.

12.19.15

I try to stay at least a half-step ahead of whatever the coming troubles will be, in keeping an eye on my mom. I was a half-step behind for the first three years; I waited for the problem to appear and then dealt with it. That seemed practical, or at least, it was my style. It makes no sense now.

What's interesting is the way the brain breaks down in specific ways that results in odd behaviors that are mirrored, at some time, by enough people suffering from this disease that Alzheimers.org devotes pages telling you what to expect. There's also a site dedicated to the often neglected oral health of those suffering from this disease: Improving Oral Health for Patients with Alzheimer's Disease. My mom is squirreling away socks filled with coins. I've found the socks under the mattress; in pillow cases; in cabinets. She's also folding whatever is foldable; she's taken kleenex out of the box and folded each sheet, which she then stacks. These are common behaviors for those at a certain stage. I think there's an urge for order, maybe, some level of control. It's harmless.

She's very interested in time and dates. I figure it's some attempt at anchoring. I bought her a huge Timex that glows in the dark, when needed. My brother bought a digital clock with time/date/day/month/year on the face. It's about 15x6 inches -- practically a billboard! I purchased Amazon's Echo, which is voice activated for time; weather; music; and all things Amazon. My mom forgets the trigger name, Alexa, but has gotten close enough that the device responds anyway. I'm loving it. I realize the privacy
issues, but at this point in my life, it's not my priority.

12.15.15

There are, generally speaking, 3 stages of Alzheimer's:

<http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp>

My mom is in the late middle stage. We're living longer. More of us will be experiencing this with our loved ones. Here are some facts from a 2012 report:
 

•One in eight people age 65 and older (13 percent) has Alzheimer’s disease.

•Nearly half of people age 85 and older (45 percent) have Alzheimer’s disease.

•Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 6 percent are 65 to 74, 44 percent are 75 to 84, and 46 percent are 85 or older.

<http://www.alz.org/downloads/facts_figures_2012.pdf>

12.14.15

I opened this blog with a post on forgetting by César Aira. I understood him to be referencing memory as the particular tendency toward rumination; in that I agree with him. There's so much we don't know yet about the brain. Alzheimer's is different in that plaque formations gum up the works. Sludge in the system
can't be a good thing.

I think I have a good memory. That opinion is reinforced by the people in my life who tell me I have a great memory. Yet, it's my younger sister, who has Asperger's, who has an uncanny memory. When we were growing up, back in the time of phone books and address books, our family didn't need them. We all just asked my sister. She was like our Siri. We didn't think anything of it.

My sister was middle aged before she got the diagnosis of Asperger's. School was an impossible time for her. Nobody knew anything about Asperger's back then. My sister would prepare for tests by trying to memorize entire chapters of books. My parents didn't know how to help her. She was the youngest of five; my sister and I were away at college, my brothers were busy with high school sports.

I was trying to help her on one of my semester breaks and she said
the most insightful thing to me: I don't know what goes under what.

That notion of the order of things is no small deal. I watch it unraveling now with my mom. She announced she's going to bed and after some time I go in to check on her. She had pulled back the covers, put her pajamas on, and then forgot what her original intention was. She sees the bed unmade and starts to make it.