How do you perform the primary caregiver function when your dementia parent has false negative delusions about you?

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My 90 year old mother who has COPD, congestive heart failure and dementia lives with us (me, my husband and my 9 year old daughter) and I'm fairly certain she was sundowning last night. It's the first time I've witnessed a behavior at this time of day that immediately made me think "sundowning," but that isn't to say it's the first time it's happened. I'm learning behaviors/terminology as we go.


So here's the scenario: Relatives had visited a few hours prior & the visit had been good. At dinnertime, mom was happily washing a few dishes in the sink (she loves this activity) & my husband asked her to move because he had something hot in his hands that needed to go into the sink. Her mood switched instantly. She stormed off her to bedroom & refused to eat dinner with us. The few words we could get her to speak to us (she loves a good silent treatment) conveyed that she'd never enter our kitchen again. (Oh, the drama! Story of my life with this woman.) My husband tried to hold back the eye rolls and apologize multiple times so we could have a peaceful family dinner, but she wasn't buying what he was selling and sulked in her room while we ate.


About an hour later I decided to spend some time with her & see how she was doing. She initiated a conversation about her parents. Specifically about their immigration from Poland & assimilation into the US culture. She specifically focused on how well they spoke English after a few years living in the US. I commented that, yes, that was quite an accomplishment seeing as how English is one of the hardest languages to learn. Boom! It was like some invisible lightening bolt shot through her room. Her entire mood shifted again - and this time WAY more dramatically, severely and instantly than the kitchen incident. She laid into me hard for "insulting and attacking her mother." She accused me of insinuating her mother was stupid. "My mother might not have been some college educated executive like you but she was an angel. How dare you talk about her like that!" She really ranted and raved. The more I tried to calm her down, the worse it got until she was full blown hysterical.


I should've walked away but it was bedtime and I didn't want to leave her in this state alone (her bedroom is only one on the 1st floor. So, I raised my voice because she wouldn't pause in her rant to take a breath and I wanted her to hear and understand what I had really said, a compliment about her parents. She did hear me and just lost it. She started sobbing like the day my father died. She kept ranting too but at that point I could not understand anything she was saying to me. My husband came into the room, took one shocked look at her and told me to leave the room. He closed the door behind him and refused to let me back in to try to settle her down. He told me there's nothing more we can do, she's up in her own head and we need to just let her wear herself out. So we went to bed. This morning there was a letter from her waiting for me on the kitchen table. It started with an apology but pretty immediately afterward devolved into something entirely different. Crazy stuff. "You live in a new world and I should know better because you know everything. All I've ever wanted so badly is just to go shopping with my daughter but that's just a stupid silly dream." [Side note: I've spent over 500 bloody dollars this week alone because she wanted new clothes for fall. And yes, I know dementia = brain damage but mother plunker, give me a break]. "You can take all that I have. You've already sold my house for far less than I paid for it. Take everything and leave me with nothing. You want the money not a mother." [Of course this financial stuff is also untrue but I've given up trying to explain math to a dementia patient] "I'm going to sit by the window in my room and never speak again. When people call to chat with me just tell them that we've decided it's best if you never have to tolerate my voice again. Now I will know better and will stay out of your way and never make a sound again for as long as I live. I'm sorry for being such a rotten mother." Great way to start the day, huh? And mind you....grammar, punctuation, spelling, penmanship...all on point for the most part. So anyway...there's this current sh*t show of dysfunction thanks to dementia. But the larger problem is that this is just the latest in a long series of delusions that my mother has wherein I am the villain always verbally attacking her in some way and she's the victim. "Go ahead, take it all from me." God, the things she's said about me over the years. I always thought she was just a spiteful, lying a-hole but now I think the dementia has gone back way, way longer than we suspected. Regardless, how do you perform the primary caregiver function when your dementia parent has false negative delusions about you? Any tips?

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Im guessing your mother is a bit -
or a lot like mine was. High drama, manipulations and tantrums.

So, do know that just because your mother finally gets placed in a nursing home - things don’t automatically become easier and more peaceful. In fact, in some ways things become even more complicated.

For those caregiver who have a loved one at home who is not ambulatory and/or there are incontinence issues there can be an immediate physical relief. But if the main issues are related to the individuals dementia- or maybe it’s just that the loved one is a difficult, unpleasant person and/or a manipulator - we’ll, a whole
new set of problems tend to crop up.

Ill spare you the gory details- there are dozens - if not hundreds of posts regarding the difficulties of looking after a loved ones care while they are in a facility that you’ll want to look at - when the actual placement time is at hand.

Starting off on the right foot with the facility - and with your mother - during her first couple months is critical. Start now defining your boundaries. What are you willing to do or not do. When should the facility call you and when should they just handle the situation on their own, etc.

Otherwise you’ll find yourself constantly in the car driving to the nursing home for whatever “emergency” is at hand - or constantly on the phone trying to problem solve.

The days of just closing her bedroom door and waiting out her tantrums will be over.

Sorry.
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Reply to Rainmom
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Don’t feel bad (well, any worse than baseline) about putting Mom in facility care.

You only get one shot at raising your children — and creating memories at home with them. You only get one shot at sleeping 8 hours every night.

And your husband, bless his heart, didn’t marry your mother, did he? He married you.

Your marriage needs to be the most important relationship in your home. Make your peace with whatever you need to do to make that happen.

Last but not least, dementia only gets worse. This year’s hissy fits might be replaced by behaviors that compromise everybody’s home safety — including Mom’s.

Sad stuff. No doubt about it. And one of the saddest side-effects is the way dementia can usurp the caregiver’s life, too.

Your mother’s predicament is heartbreaking and unfair. Do everything you can to keep yourself (and your home life) from sinking with the ship.

((((big hugs))))
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Reply to BlackHole
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Yeah, I talked to the doctor and her part time nurse was here today and took a sample back to the office. It's not a UTI. It's just another step deeper into dementia. The doctor said to think of it as similar to when our daughter goes through a growth spurt and all of sudden sleeps alot, eats more, etc. In hindsight, looking back over the past week or two you can start to see it. She's been mixing up her words much more frequently and then unable to correct herself even once you've pointed out the error (last week she kept referring to butter as mustard, over and over again...."I want mustard on my toast (she means to say butter)....yes, mustard (wrong confirmation when we ask if she's sure that's what she wants)....this mustard looks different than the mustard I used to buy for my toast (what she means to say is this doesn't look like butter).....wait! this isn't mustard (she means butter)! it's mustard (ding, ding, ding - finally using the word correctly)! i told you i want mustard on my toast (she means butter)!" i wasn't home and man, was my husband confused trying to help her make lunch. So, there was that. A few days later she misunderstood a conversation when we had guests over and then accused me of saying something that I didn't even remotely say (and never would) regarding a topic we weren't discussing. Same day she referred to airplanes as ships, couldn't understand why they were flying over the house (our explanation that Boston's airport is 20 miles away did NOT help her understand), and even after correction continued to call airplanes "ships". Then, finally the scene last night that I've already described. Tonight she refuses to speak to us. Refused lunch and dinner, and won't use her tv because "I don't want anything from you people." This part is classic mom, unfortunately. Whenever she's tried to save face over anything, she's always acted like that. How my dad put up with it I'll never know. Anyway, we've instructed her that if she doesn't start eating tomorrow and start minding her manners better by then, we're going to ask the doctor to admit her to the hospital and the nurses will make her eat instead. Not confident that'll work but it's worth a shot. The doctor told me on the phone this afternoon that over the years mom has filled in the blanks in her comprehension by crafting a script that holds me in a very negative light. Even though it's not reality, we're not going to change the script now. She's on the waiting list for a nursing home. *Sigh*
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Reply to Wubba1108
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Neither my dad or my MIL got violent , just very anxious. They paced and worried about things.. like going to work ( at night) or the "kids" (in their 30s) being outside after dark. Maybe this is something else.. like a cry for attention or a UTI, or just general "pissyness"
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Reply to pamzimmrrt
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Good Lord - it sounds as if my dead mothers spirit entered your mothers body and wrote that letter!

Once my mother - during a high drama rant once said “I won’t bother you again since I seem to be so much trouble”. It was all I could do to stop myself from replying “Promise?”

In all seriousness - could a UTI be the problem?
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