Saturday, May 11, 2019

Off-topic: a PSA about dementia in the elderly

My mind isn't on writing right now; it's about dealing with the last of the family members with dementia (the other three are now gone).
  • Fun fact #1: you can beg, wheedle, and cajole the elderly person about signing a power of attorney (PoA) or living will or doing advance planning to help them with financial matters and decisions over the course of a decade, but if they get stubborn (they will) and furious (they will), they will flat out refuse. You will hear "I'm in charge of my own money and still pay every bill on time and always will and my mind is as sharp as ever." It isn't, but at this point they will not sign and there's nothing you can do about it.
  • Fun fact #2: there's a stage of dementia when the person is still competent to sign a PoA but suspicious, stubborn, and paranoid, so good luck with #1. After that stage, of course, the person becomes more agreeable but isn't competent to sign a PoA.
  • Fun fact #3: you'll see a stream of nurses, doctors, and medical assistants who will ask the person things like "Do you still drive?" "Of course!" "Still do your own cooking?" "Of course!" and you'll know that none of this is in any way true. 
  • Fun fact #4: if nurses and social workers have said that the only safe place for the person with dementia is assisted living and a drama-loving family member has filled the elderly person's mind with Dickensian visions of it as The Home where residents are fed gruel, how likely is it that the elderly person will agree to consider such a step? And the elderly person ("sharp as a tack!") has total control over their finances, so good luck with that.
  • Fun fact #5: If the elderly person has moved over a thousand miles away from every member of their family, can you guess where your airline miles and family bank account are going to be spent during repeated crises?
  • Fun fact #6: You will feel like James Bond as you strategically disable things like the car and the stove in ways that the elderly person will not notice (you hope). 
TL;dr #1: It takes all the brainpower, cleaning power, and energy of one fully capable adult human being every day to keep a person with dementia going--all the doctor visits, phone calls, medications, and hours of conversations, not to mention keeping the elderly person from smoking near the oxygen apparatus that keeps them alive.

TL;dr #2 There is a miraculous pillminder  that locks and dispenses the right medication at the right time, because the person with dementia will otherwise spend hours rearranging medications that could kill them if they take too many. If the meds are in an openable pillbox, they will snap at you ("I know what I'm doing!") if you protest the rearrangement. The miraculous pillminder takes away all the arguments.

Anyway. I do love this person but had to express a little of what's been going on. I will probably *poof* this because it's not on topic. Sorry to be so gloomy, but thanks for reading!


Servetus said...

Just wanted to express my sympathy. My parents did a bunch of the stuff mentioned in #1 so we're not dealing with that, but right now I'm literally sleeping with all the keys to everything in the house because dad will drive even though he's not supposed to (and is probably about to lose his license) and worrying about what happens during the fourteen hours a week I can manage to be away. Last week while I was at work he hotwired his tractor and drove to town and back on it. (So even living somewhere is no guarantee of safety -- and no, he won't even consider anything other than aging in place.)

Dame Eleanor Hull said...

BTDT so so so very sorry you are dealing with this.

JaneB said...

Much sympathy! So sorry you're dealing with this.

undine said...

Thanks, Servetus! I know that feeling & have all sympathy for what you're going through. I feel sneaky hiding the batteries to the car keys and knobs to the stove, but there's only so many options to keep them safe.

Dame Eleanor, thank you! I recall that you have had similar issues & hope that things have resolved themselves.

Thanks, JaneB! It's a problem that there's no good solution to.

Anonymous said...

"no good solution" True, especially as going to court to have the person legally declared not competent to manage their own lives/money is EXPENSIVE, PROLONGED, UNCERTAIN. Makes it VERY hard as child/spouse/friend ... and is scary as an old person aging. Because this is not who most of us want to be in our old age.
I just had very hard discussion with a peer who wants to age in place but is suffering with increasing dementia and horrific loss of short term memory. "Hi, I just got in from the store." "I don't know why I went to the store." "They didn't have what I needed. No I don't remember why I went there." But she wants to 'age in place' anyway. She was horrified however when I pointed out that she could end up living 15 years isolated in her current home at the mercy of minimum wage caretakers. (Some of whom are good and some of whom are not.)

undine said...

Anonymous--exactly right. Like any court proceeding, it's an adversarial event and can get very messy. I applaud the attempt to preserve the rights of the person with dementia--but when it's clear that they have no idea what's in their own best interest, not to mention what day it is, it'd be hard to see that process unfold.

I hope to heaven that your peer who wants to age in place will give you, or some other trusted person, a Power of Attorney while she's still able to do so so that her eventual care can be managed. She's hoping, as we all do, that we'll be competent to make these decisions and healthy enough to age in place, but the odds aren't with that. Even with good minimum wage caregivers, you need to pay them, and a person with dementia is likely to get stubborn and refuse to pay them(ask me how I know this). Without a PoA, they won't get paid, and then what happens?

In this country, we don't have good solutions. We only have the ability to have everyone outlive their cognitively functioning brains by 5-10 years. We need better solutions.

Dame Eleanor Hull said...

I feel I should add that mine neither smoked nor needed oxygen so you are certainly worse off. But I have dealt with enough of this sort of thing to have enormous sympathy and empathy. My family is lucky that my dad got sick enough to be hospitalized for three weeks and then need months of skilled nursing care, so we were able to pry him out of his house, driving, etc. in the nick of time, and he gave one of my brothers POA while he was in the hospital.

It's tricky because he does always know what day it is and seems reasonably competent, but if you are around him a lot you realize that you are having the same conversations over again, and that new information trickles in very slowly. He's totally plausible if you only see him briefly.

gwinne said...

What a lot to deal with. I’m sorry.

undine said...

Thanks, Dame Eleanor. So much of this seems to be circumstances and luck; it's great that your brother has a POA for your father. The situation's the same with my mother: she can keep it together for 20 minutes or so, enough to fool people (including family members) who don't talk to her for very long. They're telling her "of course you can live by yourself! You're doing great!" which is of course music to her ears and makes those of us with more realistic appraisals Satan Incarnate.

Thanks, gwinne. I appreciate it. Knowing it's going to be (expensive) crisis after crisis after crisis, with no ability to do anything legally, is making for a lot of grim and sleepless nights right now.