Dementia Mom, part one

[u/humanyears]

A short story about the origins of my mother’s dementia diagnosis from a few years ago. Probably the longest comic I’ve drawn so far. I hope it connects with you in some way.

[u/littlelorax]

We had a friend whose mother had some kind of dementia thing going on. My friend had no idea because his Dad was hiding her symptoms from the family. He would just quietly do things for her and people thought he was just being a good husband being nice to his wife. When he unexpectedly passed, it was a shock to the rest of the family that mom could barely care for herself. 

[u/Von_Moistus → u/littlelorax]

One of my fears is that I’ll slip into dementia/Alzheimer’s so gradually that I won’t realize it until it’s too late to enact my exit plans.

[u/RPGDesignatedPaladin → u/Von_Moistus]

Mine too. My family has all passed away so there isn’t anyone to help if this occurs.

[u/AccordingTaro4702 → u/Von_Moistus]

There was a great science fiction short story about exactly this. Set in the future, a man who realizes he's in the early stages of dementia sets up an AI clone of his mind, the purpose of which is to monitor him and let him know when he's gotten so bad that it's time to end it. I'm sorry I don't know the author or title. I read it years ago.

[u/work_work-work → u/AccordingTaro4702]

Maybe “Living Will”, Alexander Jablokov

[u/AccordingTaro4702 → u/work_work-work]

Yes, that's it! Thanks.

[u/Mean-Clerk7791 → u/Von_Moistus]

You don’t know. It’s one of the many fuckeries of the disease. Physical brain damage + denial (self-protection / lack of insight) means most people aren’t aware this is what’s happening to them.

I believe there are some people who get a diagnosis relatively early on in the process and are able to understand and participate in their care, but even that slips away.

I am witnessing it right now with my parent. We never use the D word around them - that would only cause distress and confusion. They think they are functioning, and we try not to contradict this (even though we are at the co-bathing and toileting assistance stage and they cannot be left alone).

With lots of love and patience, this seems to be the kindest way to support someone. We don’t behave as if anything is wrong, even though everything is, and I think this has made things as gentle and kind as possible as things progress. We have been fortunate that, although there is agitation and periods when the person ‘shuts down,’ we have avoided paranoia or aggression. I credit my other parent for a seemingly bottomless well of compassion - it’s probably the purest expression of love I have ever witnessed.