My mother has moderate dmentia and has had 4 fractures since last August. 1) knee 2) wrist 3) T-12 compression vertebrae and, most recently, 4) fractured acetabulum.
I have many reasons to feel blessed; she has her own financial resources and we can afford her current assisted care facility, my siblings are all in agreement with the decisions made so far (I am P.O.W.).
My question is, why is this so exhausting and is there a way to get past it. I cannot seem to go to sleep or wake up without her being first and last thought.
She is narcissistic, selfish, and only wants to talk about herself and how sad she is, how awful her life is. She refuses to make friends, get acquainted or even try in her new facility. Instead she relies completely on family member visits and calls but then forgets about them as she looks to the next. She is an empty bucket that can't be filled and I know this but it doesnt seem to help my exhaustion and that of my siblings.
I am so happy to have found this forum; I actually Googled "narcissistic with dementia" to find you. Any "me too's" or words of advice are appreciated.
Have you got caller display on your phone??? Might come in handy on otherwise peaceful early mornings.
Er… You can't say she never gives you anything :) ?
And don't waste any more high quality work on her.
Sheesh. Nice to be appreciated, isn't it?
Look. One makes allowances. One accepts people for who they are. One tries to avoid taking personally bad manners and slights that aren't personal but are just part-and-parcel of one's friend's or relative's more unfortunate characteristics (and, of course, especially on the AC forum, her illness). But in the end… If it walks like a duck and quacks like a duck, it's a bitch.
You still love her. It's just that it might make life easier if you give up trying to put any construction on her behaviour that avoids telling it like it is?
I hope this doesn't offend you. I'm uncomfortable making negative remarks about other people's kin: we're allowed to criticise our own but that doesn't mean it's ok for outsiders to do it. But you did ask!
And, above all, if shrugging her off means you get to have a really good day, then that looks like the way to go.
"What? I just got up?"
"I haven't heard from you!"
(we hadn't planned a thing.)
what followed is:
"Woe is me, I can't do this and that. Drop everything, your working, your caring for your own life. Rescue me." That was the main idea of it. "What are doing today?" she demanded more than asked.
"I haven't had breakfast yet-"
"OH, call me later then." and without giving me a chance to say more she hung up on me.
My reaction: a few minutes of anger and then I resolved to go about my life for the day: working at home. I called her later and invited her to go to the park. She could sit somewhere but I need to walk around for an hour. Luckily she didn't want to go. Because she agrees to boundaries but then breaks them left and right once she gets me to do one thing and we fight over everything these days.
But I felt really good about being firm, being able to switch and not dwell on that exchange. I had a really nice day. Then I brought over some cartons for her for her move and she hands me a bag of two hand me down shirts, all her old stockings, a nice drawing of mine that I gave her, and my poetry books that I wrote.
I read my poems at dinner time. Wow, I am not kidding. They are really awesome. This was the best part of my day. But it saddens me that Mom gave them back to me. I have my own copies.
What do you make of this?
There are a number of good sites on the internet for detaching with love. Melody Beattie and others have written good books. One essential is to "Shift Your Focus from Controlling Your Loved One's Behavior to Creating Your Own Happiness". You can't make anyone happy except yourself. So start making the "thought" habit of focussing on you rather than on your mother. It is possible to change thought habits like any other habit. Determine to think about something positive, develop an "attitude of gratitude", Plan something good for you each day - even something very small. I have found that I need periods of what I call "extreme self care", when I reach bottom. Then I focus on me and what I need - like a proper diet, rest, relaxation, moderate exercise, socialization, brain activity - crossword puzzles , computer games, a good book, gardening, getting out in nature I try to build these into my life anyway, but at times decide to banish all concerns about mother and sister - not easy I know, but you can work on it, and think about/ focus on my needs. Think about things that uplift you. Basically, I think you are in a habit of worrying. I know I can get that way too.
“When we hate (I will add fear) our enemies, we are giving them power over us: power over our sleep, our appetites, our blood pressure, our health, and our happiness.” ― Dale Carnegie, How to Stop Worrying and Start Living
My sig other is away this week, so I am choosing to focus on me. and what feels good for me. Me worrying about my mother and sister is not going to change them or the circumstances, it s only going to drag me down, I am letting it go for now, I can always start worrying again next week if I want to, lol
Accept that your mum will always be a complainer and unhappy and it is not your job to change that. In fact, you can't. I know the trapped feeing, and as I am coming up 77 and my mother is 102, I have had to find ways to get out from under it. This has gone on too long and may continue for a while yet. So, as they say, "get a life" and I don't mean that unkindly. Dust off some goals from the past and start working on them. Do good things for you starting now!!! Just to be safe. also include a good physical check up, to be sure there is nothing physically wrong with you. Another idea is to see a counsellor, and/or join a caregiver's support group. Lots of good ideas here too, and also people who understand what you are going through. Writing things out helps. Let us know how you make out and do something good for you today.
Come here and read the day to day struggles of those who can not afford a nursing home for their aged elderly.
It might put things into perspective for you.
zipping up my "rhino suit" as I write this.
Countrymouse, thank you for going further with the empty bucket analogy. It is true that she will likely never be happy again and I would assert has forgotten how. Our contributions to her comfort are the important things. As to her falls. Only one, her last one Resulting in the acetabulum fracture was while she was in the ALF. She is now on a monitored alarm system which she calls "prison".
Thank you all so much, I feel this is a blessing to have this community.
Patilee, you say "She is an empty bucket that can't be filled and I know this but it doesnt seem to help my exhaustion and that of my siblings." For me, getting past just acknowledging that point to acting on it is the key thing.
I have a beloved SIL who does this. She believes, even though she knows it's unreasonable, that if she only tries hard enough, works hard enough, thinks about nothing else and waits for that eureka moment… then her mother will be happy.
Whatever 'happy' means, in that context.
It's a fantasy. So somehow, you and your siblings need to switch your attention from the impossible end goal - mother's happiness - to deciding what reasonable contribution each of you can make. Or, to use your apposite turn of phrase, focus on how much you each want to put in the bucket rather than how full the bucket gets.
Hm. I'm reluctant to criticise any ALF, knowing only too well how hard falls are to prevent completely, but I have to say that four pretty major fractures in 10 months… that's not a great record, is it. I hope she's getting her money's worth of care where she is. Does she have osteoporosis? Any other conditions apart from her moderate dementia? I wonder if it might be time to think about stepping up the level of support.
I'm sure you and siblings have also considered this important point: that the more you flutter around her, the less incentive she has to connect with her peers and the staff at the ALF. Honest, you're doing her no favours socially.
As for how you switch off in between times… Ah, well now. I dropped my mother off for a week's respite care this afternoon. So WHY, you may ask, am I here on the forum instead of down the pub with a freshly-drawn pint of ale in my hand?
Last orders in 17 minutes. Best of luck! - keep us posted.
Even a short visit to their home is tiring, mainly because of the 80-85 degree heat. Can't they open a window once in awhile to get some fresh air???
And like GardenArtist had said, her housework takes a lower priority, same here.... Martha Stewart has left the building !!!
I have to keep telling myself that my parents are adults with reasonably sound minds... and whatever they refuse to do for themselves, that is their choice, not mine so not to feed into them needing help.
I agree with setting boundaries and limiting the time you spend with/on your mom. I am amazed sometimes at how mentally exhausted I am when I come from my mom's place - and she's very appreciative of what I do. I walk in the door at my place and literally drop everything and have to sit down until I feel more energetic. And that's after spending an hour with my mom, making her breakfast and lunch. But at the same time, I'm checking her refrigerator to see how/what she's eating. I'm getting the garbage and recycling to take out. I'm looking at her foot to make sure it's OK. I'm explaining for the 20th time what's wrong with her foot and why she must exercise. I'm watering the plant. I'm leaving notes on the food I leave her. I'm checking her dirty clothes hamper and trying to carry on a conversation with her while I'm there. So I'm operating at peak mental capacity for that hour - trying to think ahead to what she might want/need/do. And you may be doing the same when you're with your mom and away.
I have found that physical exertion through exercise has helped me enormously. It's a different kind of exhaustion, but one that is soul-satisfying. So find something that satisfies your deepest emotional needs and you'll be better able to cope.
I think also that anger and resentment as well as feeling trapped and sucked into a powerful vortex of emotions is also common.
Insomnia is another aspect, except when one is so exhausted that sleep comes automatically. Although you didn't mention declining caregiver health, I think that's another negative byproduct of caregiving.
Does it ever go away? In my experience, only after the cared for one has died, but then the self-examination, self recrimination, questioning, and grief exhaustion set in .... like a fog creeping over and clouding visions of everything. Or if help is brought in and the caregiver can get some relief.
As to why the exhaustion occurs? My uneducated opinion is that it's a situation in which there are rarely good options, sometimes no clear cut answers, accompanied by intense emotions, personal, financial and career conflicts... it unique but very, very complex.
It's not like many facets of life - your car breaks down, take it to a mechanic and it gets fixed. Same with electrical, plumbing and house problems. There can be a few different repair options for house problems, but they're definable and will produce results although not always the optimum ones. Still, they're fixable problems. And if they're fixed, they don't get worse.
That's not true of caregiving; typically decline is part of the process. For those at the end stage of their lives, their health issues generally can't be reversed to make their situation better.
To get past the exhaustion, I've tried to find ways that others could help, how the travel could be minimized, how chores could be done by others, but most of all how to deal with the changing and puzzling behavior, and how to control my irritation so I don't blow up.
In my situation, Meals on Wheels as well as help from neighbors and friends have made the biggest difference. MOW has eliminated having to cook and take meals 27 miles to my father's home, as well as some of the grocery shopping. The friends provide "eyes on the ground" in the event something happens; they bring over food, have mowed the lawn, planted flowers, done house repair work and taken Dad out for dinner.
I can rest more easily when I know he's in capable hands.
I haven't found a solution for making the medical visits any less tedious and monotonous even though I read gardening magazines while I'm waiting for doctors. Nor have I found a solution for the anxiety of worrying every time my father goes for a walk (after 2 falls and 2 hip fractures), or the possibility that he'll fall again this year. It's this anxiety that I really find hard to address. I also went through it when my sister died of cancer.
The other thing I've done which would probably horrify a nice tidy person is that I've re-prioritized, with housework taking a lower priority. When I'm tired, it's more important to get rest than to dust.
I also set aside time for myself, to listen to music, practice piano, garden, and soon I want to begin drawing again. Even 1/2 hour of respite helps, because it refocuses my brain and recharges it. Music is especially helpful.
As to a narcissitic parent, I don't really have that experience, but I think that the behavior isn't going to change and this is one of those aspects for which the caregiver has to develop a rhinocerous skin (tough and waterproof) and rhinocerous relaxation (just go wallowo in the water or whatever and forget about everything, even the crocodiles). Easier said than done, yes, as Yoda might say.