Been on this forum for over a year. Last year my dad died after a relatively short experience with Alzheimers at age 93. The guy was a saint, partly for putting up with my nutso mom.

My mom is 88, and had been in great physical shape, running stairs like a mountain goat, but has narcissism or cognitive dissonance or OCD or I don't know what. VERY DIFFICULT.

A couple weeks ago she fell the bathroom at the home she and my dad lived in for 60 years and cracked her pelvis. Was thankful as I understand this is better than breaking hip . Has been in rehab for a couple weeks, but needs to leave in a week. The social worker recommended assisted living, and while I see that may be needed for some time, she is too healthy to be in that longer term, she would prefer to go to independent living. I understand probably hard to go back to her home, but indy living may work.

The SW argument is while her health is good, she seems to be nutso (she is) and can't deciding anything or use judgement. I told the therapists at rehab she has always been that way, her whole life. They said that may be, and they are not making a medical or psychological diagnosis but they fear her nutso ness may prevent her from living independently. Arent there routines for going from rehab, to AL, then on to indy living? I found a place where you get an apartment and the apartment is not indy or assisted. You live in that place and get the services you need. No stigma of assisted living, and no having to move when your needs are greater, but they are full. That would be ideal situation. Meanwhile my mom is driving me nuts but that is a subject for another posting.

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Your mother sounds like she needs assisted living, not independent living. If she's always been difficult and your dad covered for her, then she's not capable of living independently. If you continue to resist what so many professionals are telling you, you will never come to terms with the fact that your mother needs more care than you can provide and that she can provide for herself.
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Karsten, at the risk of hurting you, I'm going to remind you that when it came to your dad's care, you seemed to constantly question and resist what the professional folks were telling you that he needed.

Please learn from that experience; my experience may not be typical, but as a family, we were given truly excellent advice by the discharge planning nurses during my mom's hospitalizations and rehabs. They were spot on about the level of care that my mom needed and when we disagreed and said "oh no, she's not so far gone yet" we were dead wrong.

Yes, your mom MAY make progress in AL, but that is NOT typical. Everything that you've ever written here about your mom seems to indicate serious and long-standing mental illness that has been masked by your dad's excellent caregiving of her. Without your dad's intervention, she likely would have needed supportive care years ago.

The folks at the rehab have had some time to assess her level of functioning. Get her a psych eval and see if perhaps a short term psychiatric hospitalization might not be helpful to stabilize her extreme OCD/anxiety/agitated behaviors with meds.

My apologies in advance if you find this advice hurtful; I'm NOT saying that anything you did hastened your dad's death. I am simply remembering you resisting NH care when it seemed obvious that he needed it; or maybe I'm mis-remembering.
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Karsten Apr 2019
no problem at all. I appreciate your honest advice.
Karsten, the facility lady's saying it's not typical is, I'm sure, absolutely correct for the overwhelming majority of residents; and it's probably because of her long experience that she might well be sceptical about the idea of someone going against the flow.

But then again, your mother's situation, needs and reasons for being there are also not typical. The thing to do would be to push for regular reviews of the care plan more frequently than normal, and make sure the route into the IL unit stays open.

In fact, the only point I'd take issue with was indeed that comeback about how she gets to activities. Uh-uh. If a resident is able to participate and would benefit from activities, it is actually up to the facility to get her there; and if they won't do that - wheel her across, wheel her back - then they should be providing equivalent socialisation and stimulus in the AL unit.

But! - it's all a negotiation, and it's one where you catch more flies with honey, and a little bit of chutzpah.

The trouble my SIL found with add-on services was that a) they cost the earth; b) her MIL disputed virtually every occasion the staff said she'd asked for them, believing that it was not right or fair for them to charge a poor helpless little old lady (think: Alien's mother) "just for..." you name it; c) the services you really, really need tend not to be on the add-ons list. I know the ad hoc concept seems appealing, but the cost of that flexibility is high in cash and conflict and crises.
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I don’t think that it should be an issue or complaint-worthy that the AL will not transport someone to IL for activities. Not when the AL has its own activities.
Thanks ladies. The stigma is hers, not mine. She has stigmas abut everything. She is also not bloody (As our Brit CountryMouse) rich might say, but has enough money to be paying for quite some time.

AL is of course much more expensive than independent senior living, but if she needs it she needs it. The SW did refer us to one of these all in one communities we had looked at in the past for IL. The attitude I didn't like there was that if you come into AL, you are there for good. I said our plan was she could go to AL then shift to the IL on the same grounds later. The lady said that is not typically done, and who knows, maybe that's what would happen for my mom, but I didn't care for the attitude that we don't even shoot for that. My mom also is very social, and would like all the activities they have at the IL side of the place., I asked the director if my mom could still take part in those while in AL, and her answer was if she can get herself there. (pretty long walk through an underground tunnel connecting buildings. Which maybe isn't an unfair answer, but I didn't like "tude".

I really did like the place where you are in the same apartment, then add or subtract then probably add services again on an ala carte basis, and pay for those you need. But it was full. The place I talked to this week had a pretty big flat price for AL when my mom would not require many of those services at least now.
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Is it you who thinks there is a stigma attached to assisted living, or your mother? I'm not clear whether you're worried about the stigma or depressed at the prospect of having to argue about it!

I'm also not clear about what exactly your mother is doing that leads to the - lovely :) - formal diagnosis of nutsoness. Whatever it is, it's normal for her, is it?

What facility is the SW currently recommending? Have you been to have a look at it? Remember that in any case it doesn't have to be forever. It might still be the best answer for now.
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Karsten, what is the "stigma" of assisted living that you are talking about? Is mom against going to an AL?

Talk about "Senior apartments" and "no need to do housework" and "you deserve to have more help".

There are places that are called Continuing Care Retirement Communities. They house Independent living, Assistrd Living, Memory Care and Nursing Home, all on the same campus.

What are mom's assets? Can she afford private pay?

Has mom's mental health been assessed while in rehab? Have you asked for her to be seen by a geriatric psychiatrist while she's there? I'd get that seen to.

Also note, I'd listen to what the SWs are telling you about mom's needs. Don't second guess them. This is not their first rodeo.

Just because your mom has "always been this way" doesn't make it less of a disabling mental illness.
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