memory care to long-term care to home?

ninalu

Hi All,
My mom is in a SNF / Memory Care, which she entered early in the pandemic after community supports shut down and she lost her daycare / in-home aides etc. The loss of social supports caused a major break in her wellbeing. All in all, mom has done well there. She entered in mid-stage and is now early late stage -- maybe later than that. 

Recently, the SNF moved mom from the Memory Care unit to the Long-Term Care unit. She's not anymore a good match for the programming goals of memory care (mobility, participation.) I think they may have kept her longer than they would otherwise because she is very attached to the memory care staff. In LTC, she has new staff, new neighbors/residents. 

Does anyone have information for me about how this type of community move affects an Alzheimer's patient? I'm seriously considering bringing mom back to her home for the final part of this journey, especially because she doesn't seem as well as she did in the memory unit. She's on Hospice and they are ready to support us doing that. We have additional resources in her community that could help. I've been her primary caregiver before and am ready to step in again and do that (with help!) 

I'd love your thoughts on dying at home, what to expect, anything candid you think I should know. I lived with mom prior to her entering the SNF, but that was with a mid-stage Alzheimer's patient. She's calm, tired, sweet. Meds are well-managed. 

Thanks in advance, all you amazing people. 

BlackCat1

Hi Ninalu, I am not an expert in any way regarding this disease.  My LO seems to be at a similar level as yours on hospice and will not participate in any way.  My LO has terminal restlessness which has caused us to need LTC.  She is always trying to do things that could possibly cause injury- literally every minute.  She is also in a lot of pain constantly due to breaking her arm earlier in the disease and refusing care which was awful.  She stormed out of the hospital and refused care.  She also did this after another injury earlier in the disease then proceeded to fire every physical therapist that we hired to help her recover.  She refused to let anyone help her until another medical event put her in the hospital and she no longer could refuse.  In our situation we were  relegated to the role of "emergency managers" because she absolutely refused help until the bottom dropped out and she no longer had the mental capacity to refuse.  She is so defiant that she bites, hits, kicks, cusses, and refuses to participate.  The nurse has called us crying regarding how difficult she is.  This has been a devastatingly long journey for her and for us.  She has been on hospice for a long time and seems in better health now than when she started on hospice.  She has suffered contractures, seizures, terminal restlessness, agitation, and UTI's since being on hospice.  Hospice has been wonderful.  I am sorry that you are going through this.  It's devastating in every way for everyone.

harshedbuzz

ninalu-

I am sorry you have reached this point with your dear mom. Each stage seems to bring new and difficult decisions.

FWIW, while my dad and my aunt initially were placed in a MCF that allowed their residents to "age in place" there was an expectation that family would provide additional caregivers to assist their own staff. Dad died in MC the night before he was to be evaluated by hospice. My aunt's guardian made the decision to transfer her sister to the SNF associated with her MCF because the staff ratios and hands-on care were superior. In MC, residents were prompted to brush teeth, in SN a CNA actually brushed them. Early on after the transfer, Auntie still went to the MC floor for much of the day-- she had lunch and did activities there for over a year. She was a staff favorite-- sweet-natured, well-mannered and amusing as well. 

I know of a few folks who brought a LO home to die. Often these were men who'd been aggressive in the mid-stages and/or had younger wives who needed to work longer to qualify for pensions. With progression the aggression faded or the wife retired and the husband was brought home for the final phase of the disease. I don't recall any of them regretting it. 

While it can be done, is it the best for this situation?

Is your home appropriate for setting up a nursing-home-for-one? Do you have a bathroom with an easy entry shower big enough for your or an aide to join her? If she uses a wheelchair, do you have doorways large enough and clearance to move? Are there steps in and out of the home?

Do you want to live in such a setting- with staff coming and going at all hours and having to lock down everything against theft? Can you afford the going rate for the amount of care needed? Many HHAs have left the industry during the pandemic and it can be hard to fill shifts. 

Another piece to this is that the situation can be very fluid. This is not like caregiving in a cancer or CHF scenario where there might be some expectation of how long your LO will be with you. It might be longer than you think. My dad was a solid 6b-- he sometimes had incontinence but often as a result of radiation and poor mobility the last I saw him and dead from complications of aspiration pneumonia hours later. Auntie lived for years in stage 7- it was almost as if she had a copy of the FAST scale. 

FAST gives a potential timeline for the stages of dementia.

Measure and Manage the course of AD using The Functional Assessment Staging Test (FAST) (mccare.com)


HB

mommyandme (m&m)

I have my mom at home, planning for her to die here.  She’s stage 7c according to hospice.  We haven’t placed her so far. 

This is not easy but it’s good for us.  We are having to upgrade the systems we use to help her. I’m gonna have to hire more help soon.  We have ramps for outdoor stairs, grab bars, walk in shower, shower chair, bedside commode and lots of other things. Ordering more transfer equipment now. 

I know Lickety Glitz moved her mom from a facility back home.  Don’t think she was stage 7 then but you might reach out to her via a “ connection invitation” to get her input. 

I hope your solutions bring you peace and your mom comfort.  This is so hard. 

harshedbuzz

mommyandme (m&m) wrote:

I know Lickety Glitz moved her mom from a facility back home.  Don’t think she was stage 7 then but you might reach out to her via a “ connection invitation” to get her input. 

I'd forgotten about Lickity G. Here's a link to her blog-

Stumped Town Dementia | Portland OR | Care Giving

jfkoc

My husband dies at home with Hospice and additional care. Frankly, it was easier for me.

The youngest SJ

I don't think there is anything we can do to prep for our loved ones dying. I try to think about what would I do when I reach this stage with my mother who is on the same boat. she is still doing well relatively but I'm scared and worried. I'm the only person in her life at this point. 

I think the best thing to do is to try to do anything that makes her feel comfortable. and please remember to take care of yourself, this must be hard on you as well 

Sara 

Wild-West

We brought our mom home, remodeled the bathroom, hired a caregiver 4 days a week, and its been mostly manageable. The nights are getting rougher as mom is now sundowning like crazy. She's on hospice now, and the support has helped so much. I've also roped my brother into spending the night twice a week now to give us a break. Mom initially said she only wanted me/daughter helping her, but I just can't do it alone and she seems to be accepring of this new change.. Our plan is to hang in to the end, but sometimes I feel like she's gonna outlast us. So, we have this plan ... but who really know.

ninalu

Thank you so very much for sharing your experiences and the good questions that I need to ask myself prior to deciding to bring mom home. 

I will look into Lickety's blog and reflect more on what makes sense and how I'd handle sleep, etc. The stages / times are super helpful, HB -- thank you again.

I'm sorry for all of us who watch our LOs go through this and for our LOs. It's not easy, you are right, to weigh each and every decision that arises during the process of advancing dementia. 

Thanks again for the help and inspiration you always provide me. I don't feel alone. 

May flowers

My FIL was here with us for a few years, then MC last year May-Jan now back here after a fall and surgery in Jan. Memory care had a lot to offer at those stages, not so much now. So he’s home and on hospice now. We are hoping he can stay here through the final journey but I know we will need some help. It has become very difficult for me to get him dressed and up so I am trying to find a caregiver for the morning hours through lunch. I can handle the afternoons and DH and I can take care of him together from about 3 onward. We will add more care as needed.