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ptdurkan Asked August 2022

What is the right placement for worsening Afib heart failure and dementia after a stroke?

87 yo mother had stroke two weeks ago resulting in cognitive decline and exacerbating her afib and heart failure. Had been in hospice last summer for heart failure but “graduated” and was breathing well until stroke.
Can’t live in her independent living apt anymore. Gets short of breath with minimal activity. Fatigued. Is anxious or upset a lot of the time due to limitations and diminished cognition.
She doesn’t seem to need memory care yet. Would assisted living work given her shortness of breath and fatigue due to failing heart? I think I need to get her on hospice again. Doctor is agreeable to have her assessed for hospice but then where does she go with her physical limitations due to her heart?

Fawnby Aug 2022
Hospice if at all possible. And not with you. She is very sick and needs more help than you can give.

MJ1929 Aug 2022
A good memory care will have levels of care and will keep the more cognitive residents apart from the ones with more issues. Some of the folks at my mother's place were seemingly sharp as a tack, and if you didn't know them personally, you'd never know anything was wrong. The facility had all sorts of activities for that bunch (bingo, exercise time, trivia games, music therapy with live musicians, discussions, etc.), and those who were farther gone had simpler activities with the aides participating.

My mother started with the first group, although she was somewhere in between the first and second bunch. She was hampered by deafness and macular degeneration as well as her dementia, but she hung in there with the higher-functioning group for about a year. She, too, had heart failure and afib, and minor strokes caused her vascular dementia. Her facility cared for her wonderfully all the way up to and including hospice care and her eventual death.

I would say you're at the point where you (like me) have to decided whether to focus on the quantity of life vs. the quality of life. Your mom seems like mine in many ways, and I finally just decided I wanted her to be as happy as she could be and moved her to memory care. After that and a couple of bad visits to hospitals, I then decided to do hospice and anything she needed treatment for was to happen on the premises and no more hospitals.

It worked out very well, and she died at 92 thinking she was 16 and the picture of good health. What could be better?

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BarbBrooklyn Aug 2022
PT, the hard truth (and this saved my sanity) is that at some point, there are no "good" choices, only the least bad ones.

Your mom, with her current health issues, needs to be in a Nursing Home, not at home with a non-medically trained aide.

ptdurkan Aug 2022
Thank you all. After rehab she came home to her independent living apt and I’ve been staying with her while figuring out where things stood. But I can’t stay much longer. She can stay here in her apt with an aide periodically throughout the day and hospice. She is being evaluated for hospice this week. I thought staying in her apt might make her feel better than moving. But now she’s worried about living in her apt on her own.

So What’s right??
Her being in her apt with aide and hospice. But living alone those other hours when me, aide or hospice nurse isn’t here.

Assisted living where she doesn’t have the stamina to do what she needs to do there and she didn’t really like. 

Long term care which I believe she gets a room and is more clinical and she would hate. But is probably appropriate for her current health status. 

Taking her to my house and I care for her and try to do my day job and already know I don’t think I can handle it. But I could get an aide there. 

None of them is an easy option. 

am I missing the right answer?

BarbBrooklyn Aug 2022
Is she currently in the hospital?

If so, ask the discharge planners for help finding a rehab place that also has different levels of long term care. She can then transition seamlessly from rehab to resident.

Anxiety after stroke is common. Get a consult with a geriatric psychiatrist while she is in the hospital.

Do NOT let anyone tell you that you need to take her to your home "temporarily". Facility to facility transfers are much easier.
ptdurkan Aug 2022
Unfortunately I mistakenly may have taken her home before knowing this.
JoAnn29 Aug 2022
She has too much wrong with her for AL. There name says it all "Assisted". Your mother needs more care than an AL can give. Most of their staff are aides not medically trained. An RN and maybe an LPN. A Dr maybe affilated with the facility biput he is not there. You Mom maybe better in a nice LTC facility where she has Nurses around the clock.

Geaton777 Aug 2022
You can have this discussion with a good, reputable and well-run facility as your mom is surely not the first person to have these issues and needs. You may also want to have a discussion about LTC (long term care) with her doctor, to see if/when she would qualify for this (because Medicaid does cover this level of care, if/when she also financially qualifies).

You can also have a chat with her doctor about meds for her anxiety. Dementia often prevents the person from being able to bring themselves to a state of calm on their own anymore. Her anxiety may lead to uncooperativeness, or paranoia, which can make providing her care more challenging.

In AL, many facilities have "add-on" services for those who need extra assistance (like dispensing medications, laundry, etc). My MIL is in a non-profit facility run by the Presbyterian Church (not her religion). They have many very excellent facilities in our state and because they are faith-based and non-profit they see the care as a mission. She gets treated like a princess there, and is on Medicaid and even has a private room. Make sure wherever your mom goes, it has a continuum of care levels (AL, MC, LTC, hospice) and accepts Medicaid. Always ask the admin how long they've been there. If it's been for a long time, that's a really good sign that it is probably a very well-run place. Also, ask for facility recommendations on Nextdoor.com and you will get very insightful information from your local neighbors.

I wish you much success in finding the right place with the right type of care!

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