Ok, this is more a thread I would like to start to let off steam, not about how soul-crushing caregiving for dementia is, but about the sheer absurdity that becomes comical/tragicomical:
Every. Single. Time. I finish all the tasks (which are there more this week because there is COVID in the household and I am stuck inside without aides), he's fed, he's had attention, a chance to move around, personal care, the laundry, the supply orders are made, sanitizing, dishes, etc (it never ends)----I finally sit down to answer some of my own emails or send a message to my boyfriend or even just to MAKE A LIST OF THE THINGS I HAVE TO DO----he needs/wants something OR just starts talking incessantly. I'm at the point where I won't entertain every single demand (he does not ask for things, he's telling you his order like a jerk old guy to a poor diner waitress, and I was a diner waitress once haha), I just give a short reason why I won't do it if its an absurd request ("Can you turn the kitchen light off I can't eat"), and he tries to flip the narrative that I'm starting trouble, apparently by sitting down. Then he backpedals and apologizes. All of this feels like the most annoying possible way to retain control, and it's rude, and he's kind of manipulative. It's extremely irritating, but not escalating...just feels like a Groundhog's Day song and dance and sometimes I just have to go in the kitchen and laugh instead of groan because this behavior is EVERY. SINGLE. TIME. I. SIT.
Once you place your loved one in Memory Care AL, there is STILL the phone calls and visits where each one is a repeat of Groundhog Day! It doesn't end just b/c you've placed him; the same stories and behaviors are repeated THEN as they are NOW. My mother is 95 next month and in Memory Care for 2.5 years now with advanced dementia. Every day she calls to say she isn't 'going home tonight' for one reason or another, but to tell the 'family (who are all deceased) where I'm at' and to 'take care of the baby' (still haven't determined WHO that is) and on and on. If 'mama or papa' (dead since 1940 and 1984 respectively) ask for her, 'tell them where I am'. We have a repeat discussion of why nobody calls her, and why the family has 'abandoned' her so I come up with a variety of different stories about what they're doing and why they're 'too busy' to call her (we don't discuss that they're all in heaven). So I try to laugh sometimes because I know for a fact I've already cried too much already.
Visits aren't any easier because the incessant chatter about nonsense is difficult to follow and/or to have ready responses for. She tries to get up from her wheelchair repeatedly which has me flying up to stop her; she's already fallen 49x so I'm trying to prevent another. Sometimes she's highly argumentative and even manipulative, so it's all very exhausting and endless, really.
Laugh and groan all you need to, and vent away! Dementia is a horrible thing to be afflicted with and it affects EVERYONE in a negative fashion. None of us get off Scott free when dementia is involved; the whole family suffers the ravages of it.
Sending you a hug and a prayer that you're able to laugh off more of the behaviors than you cry about.
In her house, she does exactly what you describe. And she's the youngest and least needy of our mothers, and not the reason I created an account on this site. It'll be rough when it's her turn.
I really try to retain lightness in my voice, because I have resting-b*tch-face by nature, and I know my irritation is incredibly visible, so I have to even it out monotone. It's like Ben Stein level sometimes. It just gets to me that it's when I've already sat down. I've even pointed out that he does this, and he just turns it on me somehow lmao. I feel bad for him of course, but he is sooooooo annoying when he's in a semi-lucid state; he's sweet when he has full lucid moments, and he's an absolute demon when sundowning without medication. It's really cartoonish.
There is no fix, so just know the struggle is real and you are not alone.
Probably not a conscious thing - just deep in his brain somewhere he knows he needs another person to survive & so he must ensure he keeps a tight reign on his carer.
I had just sat down once, as you say, after running around doing everything for everybody. Just lifted my fork to my mouth (everyone else started eating long before) & I felt the stare & then the "I need..."
In that case it was behavioural due to mental illness & I no longer have a care role for the person.
hug! your poor wife. i hope she doesn’t treat your wife like a slave/servant.
caring women are often exploited/treated like slaves/servants.
“I'll let you”
by the way, i think some people do it on purpose to provoke you. they want to upset you. they want you to reach the explosion point. no one in the world would like to hear “i’ll let you”.
i also really dislike:
“want to” give me a hand?
—rather than these sneaky, impolite, expressions, i prefer “please can you give me a hand?”, etc.