Tell LO she has Dementia...or no?

dmo22

Hi, I'm new here. I could use some advice.

We admitted Mom into Memory Care in May following a procedure to remove a cancerous mass from her kidney. She has early/mid stage dementia and is very stubborn and would never have gone willingly so we told her she needed to be there for rehab. She is also still very smart in many ways and can see that something is up and we're not being straight with her. She is also legally blind with macular degeneration which makes being at the facility particularly challenging and isolating for her.

Well now she realizes (was told by a doctor) that her kidney cancer is gone and she is perfectly healthy (physically) so she is insisting on going home. She can never go home because when she was home she was verbally and nearly physically abusive to my 85 yr old Dad. She nearly killed him with the stress of it all and they can never live together again. He is recovering from cancer himself and would not be able to effectively care for her any way.

Her anger with wanting to go home is getting disruptive at the facility and they believe we (the doctor, actually) should tell her she is not going home and should inform her of her dementia because that is what is causing all her anger and anxiety. Dad doesn't want us to ever tell her she has dementia and that she is never leaving the facility because he knows it will break her and he can't bear to hurt her.

I'm just thinking about options on how to proceed. If we tell her that she has dementia and isn't going home, will she even remember that or will we be telling her this every day? Do we tell her that Dad isn't capable of caring for her? She will just say "We'll hire caregivers." We've been making up excuses all along and she's too smart at the moment to keep doing it. I feel like we just need to rip the bandaid off and tell her the truth. Any advice for us? Thank you.

sandwichone123

There's a lot going on here. She can tell that there's something going on, but she doesn't know what. She has a history of verbal abuse and the facility is questioning how well she will fit in. I would tell her that there are some other health concerns. Somehow we, as a culture, don't think brains are part of our bodies so we can say things like, "he's perfectly healthy" when someone has a terminal brain illness.

Given all of this, I think she should be told that she has an illness that will keep her there "for quite a while, until 'they' can get to the bottom of it. They don't want you moved so you can get used to finding your way around here." But she should also, IMHO, be medicated for the conditions that make her so upsettable. I'm a believer in medicating people who are not comfortable, and she's not comfortable if she's abusing your dad and the staff.

NuttyProfessor

Unfortunately, you can't tell someone with dementia that they have dementia.  They have absolutely no insight and won't take your word for it.

She sounds way too early in the course to be in memory care.  It's not clear that memory care is a good choice for her anyway, given that her blindness will limit her ability to wander and also her enjoyment of group activities.  They really aren't set up for people with physical ailments.  From what you describe, the facility will likely discharge her if she continues to be disruptive, unless they arrange for her to be sedated.  (This may be just me, but every time I visit a memory care facility, nearly all the residents look drugged out of their minds.)

Maybe find her a place that better fits her needs?  Like an assisted living apartment, with an aide during the day to help her find her way around.  Either way, she will need time to adjust.

Home care could still be an option.  For example you could have your mom sleep in a different bedroom so she won't disturb your dad, and get a live-in aide.  Does your dad qualify for hospice?  That could help pay for an additional aide plus nurse visits for him.

caregiving daughter

My mom read her diagnosis and still had no idea that it applied to her or what it meant. I think she even referred back to the papers several times.

M1

dmo, similar issues have come up with my partner who went to MC from the hospital mid-April.  She has anosognosia so doesn't realize her deficits, and although she's been told multiple times that she needed memory care, was going to memory care, is in memory care now, none of it sticks.   Her transition has been very difficult--I have only been able to visit in the last two weeks---and at one point the memory care staff asked me if it was okay if they had a frank discussion with her that this was going to be her home now, etc.  It hasn't made a bit of difference.   So I would personally avoid the discussion as futile and just likely to cause upset.  I think you just have to live through it.  My partner still is ready to leave every time I see her--she has her room packed up and won't let anyone unpack it--but finally, after six months, I can at least visit and distract her for an hour or so at a time.  Be prepared that it may well take that long if not longer.

mommyandme (m&m)

My mother was a nurse.  She was always looking for medical and surgical answers for any and all of her ailments.  She got herself to a neurologist who diagnosed her with Alzheimer’s.  She knew what it meant early on.  Fast forward to stage 5,  she’d ask me what was going on with her, why things were like they were…she’d lost the meaning of any diagnosis. I asked her if she knew what Alzheimer’s was, she said “no”, end of further dementia/Alzheimer’s discussions.  

I think whether or not the discussion should be clear on their diagnosis depends on your LO.  Although it seems there does come a time that mentioning their diagnosis is moot and can be quite destructive.

I’m very sorry!