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I live 1000+ miles away from my mom, who has dementia and untreated depression (both of which she does not acknowledge). I'm the only child. I work remotely, and I've been able to fly back and live with mom for several extended periods when her care required it. I've set up a wonderful nurse care manager, a money manager, and a social worker who help her with medical appointments, finances, and other day-to-day tasks when I am not there.


Most recently, I've been living with her for the past month while she recovers from placement of a shunt for normal pressure hydrocephalus. She is home now and receiving in-home nursing care, PT, SPT, and OT (although she dislikes all of her providers and refuses to cooperate with them much of the time). She is supposed to be practicing mental and physical exercises, but she won't do them. She also won't change clothes or bathe and just lies in bed all day, refusing to even read the paper, watch TV, or do anything at all (including bathing or changing clothes). She's very unpleasant to me, although fortunately she forgets whatever it is she's angry about within minutes, so at least there's that. Basically, her day consists of staring at the wall, resisting her carers, and asking me where the next meal is. I am frustrated. We are going to raise the possibility of depression at her next PCP appointment, because I think this may be part of the problem (she's of the generation that would *never* admit to such a thing, so we'll have to talk around it...)


I guess I'm wondering if it's OK to fly home in a few weeks. I've put as many providers in place as I can (she REFUSES to consider assisted living or memory care). She's going to have a home health aide in the home all day, as well as a rotating suite of various nurses and therapists. She was never a great mom and we were not close, so now that I am in charge of her care, I'm always second-guessing myself, wondering if I am doing too much or too little.


Long term, she will need to go to memory care. But because she basically hates everyone and everything (other than her own home and bed), I am pretty sure she won't thrive there and she will be miserable. We're trying to put that move off as long as possible, because she will be livid.


So... have I done enough? Is it OK to return to my home? Thanks for reading all this. I'm at the end of my tether, as you can tell.

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As children, we need to do what we need to do. Your life is 1000 miles away, and it seems you are ready to head home, so without knowing all the details, I would say its time to head home!

It sounds like Mom is in her own home? I think you will need to figure out the long term plan though, as overall, things only go downhill. As many people have told me about my dad, the parents likely will never be happy about their situations, no matter what we do. Trying to make everything all peachy keen is not possible.

If she is at her home, with a complicated set of various helpers, it may become very difficult to manage from afar, if not already. An AL / MC may become much more feasible to you even if she stays in her own town.

So, will she stay living in the town where she is, even when in MC? is there a reason to stay there? If so, that may be fine. Can she be moved to a MC in your hometown to take away the travel aspect? Howveer you would need to be able to make sure you can keep your own life intact and set boundaries and not end up visiting daily etc etc.
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Southernwaver Feb 9, 2024
Just wanted to say the term “peachy keen” is one I haven’t heard in a while and brings back memories!
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She may have dementia, or a UTI (which can have dementia-like symptoms in the elderly). I would have her tested for a UTI, which is treatable.

If she has dementia and you are her PoA, please consider transitioning her into a care facility (and I myself would choose one close to where you live to minimize long-distance management and travel costs/time/effort). But, do whatever you think will work for you, her care manager. There will be no "pleasing" someone with dementia and memory issues.

It will be more work in the present (even if you are her PoA cuz she may not cooperate but there's strategies for that). Eventually the arrangement will improve once she's in a facility that is appropriate.
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SuperCats Feb 9, 2024
Thank you Geaton777,

Thank you for the suggestion about the UTI - I will have the nurse take a sample next time they are here. She has been diagnosed with dementia, and after reading your post and several others, I understand that now is the time to begin the process of moving her to memory care. I am POA, thank goodness, which has helped me to protect her finances (she is very vulnerable to scams). You are right that there is no pleasing her at this point, just keeping her safe and as comfortable as possible.
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She isn’t thriving at home so what does it matter where she stares at a wall?

Go home. There isn’t anything else you can do for her. Go live your life.
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SuperCats Feb 9, 2024
Thank you Southernwaver - You summed it up, and as much as I wish you weren't right - you are, 100%.
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Mom needs 24/7 care . I can’t tell from your post if she’s ever alone .
She’s miserable even though she is at home . It’s time for a facility for Mom and for you to go back to living your life . Mom’s mood can be treated at the facility, although the results may be limited . Some with dementia respond to antidepressants better than others . If your mother was always a miserable 1/2 glass empty person don’t expect much .
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SuperCats Feb 9, 2024
Thank you waytomisery - I know in my heart that you are right and that I need to begin getting her into memory care. Mom was always a "glass bone dry" person - so I really shouldn't be surprised that dementia has not improved that trait.
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Who are the ‘We’ in “We're trying to put that move off” because “she will be miserable”. Have you left a wife and grandkids to go and wait on your M? Are they verging on ‘miserable’ now? Are you? Just how much is being sacrificed because M might be “livid” if you stop toeing the line?

Keeping you under control and herself in “her own home and bed” is M’s best option right now. If you leave, things WILL go wrong. Let the nurse-manager you have hired take over sorting out the problems. It won’t be done as well as you can do it, on the spot with M full time, so it might stop being M’s best option. Don’t go back, and tell the nurse-manager that the next step will be into a facility. If you want, you can research facilities before you leave. Make sure that the nurse-manager takes responsibility for the step, at least in M's eyes. M will probably take it better from her, so make sure you don’t bob up as an option again.
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SuperCats Feb 9, 2024
Thank you Margaret -- Those are helpful questions. "We" is my own family and mom's sisters. Her sisters don't really understand how bad it's gotten, however. She is quite expert at seeming normal and cheerful for 5 minutes when they call (although even they can see how often she repeats herself). I am definitely verging on miserable! And you are correct - mom takes everything better from the doctor or care manager than from me.
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Yes. You have done enough.
You are enormously lucky in that your mother is able to afford this kind of care.
It would be untouchable/impossible for probably 90% of the population.
You have made excellent use of her money in providing this for her.

I would say, simply on the basis of her medical issues, that this is soon no longer sustainable at home whether your mother likes that or does not.
I see you have listed this under dementia, but other than your saying she forgets most interactions with you quickly, I don't see much about her competency.

If you are POA it will soon be time to place your Mom, as you acknowledge, in memory care.
Whether she "likes that" or "wants that" isn't the issue any more. Your mother has had her life. You have the right to have your own. She is difficult. I am sure she WON'T like it, but I don't much worry about that, as she overall doesn't like MUCH, does she? So not liking it would be the norm.

You didn't cause any of this and you can't fix it.
I would consider what sort of heroic measures you are ready to continue for your Mom before you consider palliative care.
I personally cannot imagine wanting to live as she is living; I think it would be a service to her to allow nature to take its course at this point.

I am sorry for all this. It is a tragedy for your mom and a misery for you to stand witness and to sacrifice so much of your own life to something you didn't cause and can't fix.
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SuperCats Feb 9, 2024
Thanks AlvaDeer - This is really helpful perspective. Mom currently scores a 16-18 on the MoCA and is a moderate fall risk with very limited mobility. She requires help with several activities of daily living. She is lucky to have very good long-term care insurance.

Having read your reply and some of the others here, I agree that it's time to start looking for a memory care placement, regardless of her feelings on the matter. It's true that at this point, she will not really be happy anywhere. So better that it is somewhere safe with appropriate treatment options.

I was raised to always ignore my own needs to cater to hers. I know intellectually that that is unhealthy, but at the same time it can be hard to put that realization into practice. Thank you again.
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Cats,

You have done more than enough for your mom.

I like your idea of bringing up depression at the next doctor’s appointment. Hopefully, meds are able to help.

Go home and live your life. You have safety nets in place for your mom.

You’re right to feel that placement is going to be necessary in her future.

Wishing you peace as you navigate through this difficult process.
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Supercats, you know that it’s unhealthy (and abusive) for a parent to raise a child (you) to ‘ignore their own needs to cater to theirs’. You are still doing it, and you are raising the children in your own family to see you doing it. This means passing on the problem. For the sake of your children, provide a good example by standing up for yourself and for them. Doing it for your own children may make it easier to put your knowledge into practice.

Suggest that M’s sisters go to see her. If that’s ‘too hard’, tough luck. Leaving your family and moving in with her is MUCH too hard.
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Go and read my entire post on this exact same subject--keeping MIL home because of they placed her she'd give up and die.

Well, she moved into an ALF this week and while she is not HAPPY, she also didn't DIE, so that was a worry with no punch in it.

My DH actually said, the day they moved her, that they should have done this 5 years ago.

I can say fairly that I was getting ready to leave my DH. His over-involvement in this mess has really screwed us up.
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Mom should not be living alone.
Even with all the support you have set up I am sure there are times she is alone.
From your description she is not "thriving" where she is now.
She would be safer not "thriving" in a MC facility where she is getting 24/7 care and support.
If possible I would consider looking for a MC facility closer to where you currently live so the few times you do visit will not be such an expense of both time and money.
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"Most adults are still living for the approval of their parents. Trying to get the love they didn't get as children. Living life for someone else leads to one path: regret. The most important skills to develop as an adult is the ability to disappoint."
-@the.holistic.psychologist

You've done enough. Long ago, it was more than enough. It's okay to go home. It's okay to place mom in Memory Care Assisted Living. It's the safest place for her. Recognize she's always going to be miserable, even in the Palace of Versailles. She'll complain the gold is tarnished, just as my mother did. It's okay to untether yourself from the FOG of the only child grooming you were subjected to, as I was, and put YOURSELF first for once. It's not "selfish"; mother is the selfish one, in reality.

It's okay to recognize it's not your job to make mother happy, believe it or not. Thats a powerful realization right there.
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SuperCats Feb 9, 2024
Lealonnie - those are powerful words and I really appreciate them. What a powerful quote too; I need to put that one in my journal this evening. It's true: she won't be happy anywhere, and that was the case even before her dementia. Thank you, thank you, thank you.
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My mom initially went into an assisted living facility for therapy. She had been hospitalized many times with therapy after each one so she was used to this, only this time was permanent. She was also at the point of needing 24 hour care. To our surprise, she loved the place and it wasn't long before she was calling it home. It really was one of the nicest places she had ever lived and this worked out so much better for her and the family. Wishing you good luck with your mother.
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