Saturday, December 30, 2017

Living With Alzheimer's

As I mentioned not too long ago, Oma (The Queen's Mum) is afflicted with what appears to be Alzheimer's Disease. I say "appears to be" as Oma has never been formally evaluated or diagnosed because she and Opa have a serious case of avoiding the medical community. Said avoidance is partially rooted in their religious beliefs that God is the source of all healing, and their faith that God will heal them in His time (which may or may not be in their physical lifetime). Some of said avoidance comes from Opa's  pathological, and nearly obsessive/compulsive, germaphobia (which is a story in and of itself for another time). The remaining reasons for their avoidance is a mix of distrust of  medical doctors, too much internet, major procrastination and a few other things to boot.

Having said that, Oma exhibits many telltale Alzheimer's symptoms. So, some may quibble and say she has dementia instead of Alzheimer's. To them, I say "po-tay-to" / "po-tah-to". The end result is the same: Oma is nuttier than the backyard squirrels.

So, what's it like to live with an Alzheimer's person?

Strange is probably the best description. Frequently illogical and frustrating. Occasionally terrifying or amusing. Always sad, and generally unpredictable.

In a way, it is like living with a young child. You are constantly watchful for dangerous behavior, correcting, guiding, etc. The unfortunate part is that, unlike a small child who is constantly learning and developing, the Alzheimer's afflictee is incapable of remembering new information and begins to loose their grasp on long established behaviors.

Case on point: hygiene. You, me and pretty much 99% of the population older than the age of 3 or 4 has a pretty solid grasp on what's involved with going to the bathroom. Take care of business, wipe, tidy/clean up as necessary, flush the toilet, wash your hands with soap, dry your hands and go about your day. For the Alzheimer's person, each step in the process is an opportunity for disaster. We pretty much have to be eternally vigilant to insure that each step is properly taken care of in the proper order. We frequently have to remind Oma of one or more steps in the process. It goes something like this:

Us: Oma, you need to wash your hands.

Oma: I just did.

Us: No, you didn't.

Oma: Yes, I did.

Us: Oma, we were standing right here. You haven't washed your hands yet.

Oma: What do you mean?

Us: Oma, please just wash your hands again.

Oma: Okay, but this is crazy.

Us: Use soap Oma.

Oma: What's soap?

Us: [praying silently for patience]

She can, and has, forgotten one or more steps in the process on multiple occasions, and it's akin to Russian Roulette as to which step will be the odd man out on any given day.

Getting her to shower is a challenge. She can sit there smelling riper than a summertime outhouse and adamantly insist that she just took a shower when you suggest it's time to bathe. Ditto for brushing her teeth.

I mentioned in a previous post about Sundowner Syndrome which is a joyful aspect of Alzheimer's. That's still hanging around. Her anxiety really increases an hour or two after sunset for some reason. Tonight was especially bad. We were out for dinner at a crowded restaurant, and she kept wanting to get up from the table to go looking for Opa (who was at home). Unfortunately, her anxiety was so overwhelming, she couldn't even form a coherent sentence to communicate what she wanted. She just kept pointing towards the door and saying "Can there....him..." or similar things.

One rather annoying trait that has manifested itself is an apparent compulsion to whistle constantly. Everyday. It's the same few songs. Over and over and over again. It's like she has a very short playlist stuck in her head, and feels the need to whistle the Blue Danube Waltz, Take Me Out To The Ballgame, or a handful of other songs at any given moment.  The mood usually strikes when she gets bored (which is often) or when anyone else in the house happens to whistle for any reason (it's like speaking the devil's name and he will come). We try to distract her with reading magazines (which she chooses to read out loud for some reason) or old TV shows. The Andy Griffith Show has been on nightly reruns here at the house for the last 3 months or so ever since Opa discovered the complete series on Netflix.

There is a set of related behaviors that I find really odd and particularly frustrating. She will get into anything and everything, move things around or take them, and then hide things. There was almost a knockdown fight between The Queen and Oma over her raiding M&M's piggy bank. The Queen discovered the situation just in time to see Oma stuffing M&M's stash of small bills into her pants. Oma steadfastly denied taking anything even when confronted with the evidence. We have to keep an eye on Oma's every move because she is constantly taking things and putting them where they don't belong or stashing them. M&M's stuffed animals are frequently moved around the house. If Oma doesn't finish her dinner, she will stash her leftovers in the cubbyhole of the headboard on her side of  the bed (which, interestingly, is also her chosen place to stash dirty underwear) or in the oven.

Oma can get downright creepy sometimes. I will occasional banish myself to the couch or M&M's bed (when M&M has jumped into our bed) after The Queen has poked me for the 5TH or 6TH time that evening for the unpardonable sin of snoring and keeping her awake. I have been awakened a couple of times by Oma fumbling her way around the house in the dark on her way to or from the bathroom for a late night potty break. If I'm really lucky, Oma is wearing clothes when this happens.

She has also lost any concept of personal space and tends to be a bit grabby. She's got a pretty firm grip too.

So far, we haven't had to worry about Oma wandering off, but we also don't let her go outside unattended. We also have had to prevent her from just answering a door knock without checking who is there.

Not everything she does is a negative. She remains very thoughtful in some ways. When we bring her a plate of food, she always offers to share it with whoever is nearby. "You want some of this?" We always remind her that that's her food, and that everyone else has their own food. She is still a happy person overall when she's not frustrated with us over asking her to take a shower or wash her hands. On the plus side, she no longer tries to convince complete strangers that they are Jewish or have Jewish ancestry (which was actually pretty funny...especially if the strangers were people of color).

It saddens me that her memory has more holes than Swiss cheese. She does not remember M&M is her granddaughter and doesn't even know her name anymore. She sometimes forgets M&M is a girl and asks where that "little boy" went. Most days she doesn't even remember her own name. She still knows that Opa is her husband, but I don't think she remembers his name either. She doesn't remember who her kids are.

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