transition from SNF to at-home care?

odowd

Hi, curious to know if anyone has experience with transitioning a PWD from a nursing home to in-home care.

Mom has MS dementia, and in addition has mobility issues related to her knees. She is reliant on a wheelchair now. She does transfer herself from the wheelchair to the bed and the toilet, although with noticeable difficulty. She also has urinary incontinence. 

We got mom Medicaid-eligible about seven months ago and she has been in a SNF since then. But she gets sad and depressed all the time about "being alone," no one around, nobody cares, she just wants to go home, etc. It breaks my heart. I had hoped, hearing from friends' experiences, that after a while she would adjust to living there. But it's been seven months now and she hasn't.

I've been considering moving back home (I live in NJ, mom is in MI), but if I do that I wanted to look into the possibility of having her move in with me and transitioning her to the Medicaid waiver program that would provide in-home care. Our elder law attorney has advised against it, saying "the Medicaid waiver program has been broken for 20 years." The SNF has also advised against it, saying mom definitely needs 24/7 care and that the Medicaid waiver program has a wait list of 6-9 months. They also said the Medicaid waiver would likely cover a max of 8 hours a day of in-home care. They pointed to the incontinence as a factor, that without that it might be a different situation.

I know, everyone is recommending against it. But I can't help but feel mom would be more comfortable living with me. But I also struggle with the idea that even if I could make it work, how long would it be sustainable? Would I just be moving her back into a SNF a year from now? I also have to work full time, and worry that with only 8 hours of in-home assistance it would be too much for me on my own.

If anyone has done this, I'd appreciate hearing about your experience.

SusanB-dil

Hi odowd - I know you feel for your mom.  However, there is A LOT involved in caring for someone who needs 24/7 and extra care like this. And you work full-time as well. Especially just dealing with the incontinence, besides all the other factors, my fear is you would be burned-out in record time.  A suggestion is more face-time via cellphone or zoom.  Can they get your mom involved with more activities at her capability level, or social gatherings?

jmlarue

Perhaps a better option would be to find a SNF close to you in NJ that provides an environment with better attentiveness from staff and more opportunity for resident interaction and activity. The real advantage of that move would be to make it easy for you to visit often even if it's only for short periods of time. It just sounds to me like the SNF she is in isn't a good fit for her and you are unable to help like you want to because of the great distance. Personally, I wouldn't consider moving in together to be her caregiver. It is really difficult for you to conceive how truly exhausting it can be to care for someone with dementia, mobility limitations, and incontinence. Remember, too, that she will further decline in all those areas over time. I hope you consider a move for you mom so you can spend some quality time with her, but not sacrifice every moment of your free time caring for her. You need to think about living your life and caring for your needs, too.

Lindsay22

Also remember that her needs will only increase.  I agree that moving her to a facility close to you where you could visit frequently could be a good option.

harshedbuzz

odowd-

I'm sorry your mom is unhappy. The reality is that many SNF aren't set up for PWD in terms of engagement and activities. That said, sometimes safe and cared for is as good as it gets.

One point about NJ, it is one of the states that does allow for Medicaid to fund a MCF- I don't know how available these beds are or what you'd have to do to get one, but consulting with a CELA in NJ may give you some ideas. 

Her care needs will only increase and as she progresses with dementia, she may become less cooperative around ADLs. 

HB

Jo C.

Dear odowd, you are a caring and loving person, your mother is blessed to have your care and advocacy.   This is an understandable dilemma and I can understand where you heart is and how it seems to bump against various logic points.  If only we had a crystal ball to see into the future, but alas.

There have been some Members who have taken their Loved One (LO) back home after having been placed.  Some have had success, others have had issues that were significantly problematic.  Each situation and person is different.  You are very wise in looking into this in detail.  Sustainability is of course the big question as the acuity of care needs rise as the dementia progresses.  At end of disease, Hospice has been a wonderful support for many families, but it is the "in-between" that is the big unknown.

Have you been with your mother for hours on all three shifts of the day where she is now?  It may give some insight into the dynamics if you were able to assess those 24 hour needs.  Our LOs as they progress often need available help 24/7; there are ways to deal with that, but it takes much dedication and also some funds to pay for assistance if one needs to work or to have some respite break time during the week if the state does not cover such services.  As it is, state sponsored services are strictly limited and of short duration for numbers of hours. We also have to depend upon the reliability of those who are hired care aides which can also be a challenge. 

It may be helpful to discuss your concerns and feelings with a Social Worker; the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have useful information and can often assist us with our problem solving and planning.

You have already consulted with an Elder Law Attorney in your state and received input from the legal standpoint.  As others have mentioned, would it be possible to search for a facility of excellence that would best serve her needs near where you live?  This way, you could be with her as much as you wish/can, you can attend activities with her now and then, wheel her outside weather permitting as well as around the facility to visit with others, etc. if her mobility is compromised.  This would allow you to be a positive presence in her life at a level that suits you both.  Some have even taken their LO out for a drive or to eat, condition permitting.

I did look at your Profile and see that you mother has had several falls and has definite care needs.  It may be that having her in care, nearby where you live for better access would serve you both best; that is of course up to you.

So many times we see our beloved parent unhappy and we so wish to help them; however, it is also true that so many times there is no way for us to bring them "happiness," that sadly is part of the disease dynamics.  You can only do your best and it seems you are on top of things.  Why not make a call to a Care Consultant for a heart to heart conversation about your situation.

Please do let us know what you decide; we will certainly be thinking of you and we truly do care. With warmest of thoughts being sent your way from one adult child to another,

J.

odowd

Thank you all for the input. I did consider moving mom to NJ but don't think it's practical given that we would need to hire another attorney here and go through the whole Medicaid application process again. My brother and a few other friends/relatives are all near mom in Michigan, so they do visit (brother is typically there three times a week). 

We're happy with the facility she's at; they have tons of activities every day. The problem is getting mom to participate. She tends to avoid anything before lunchtime.

I did spend six days with her around Mother's Day and visited both late morning and late afternoon/early evening. Most of the time there I had to assist her getting out of the wheelchair into the bathroom. But I also got to spend some enjoyable moments with her, sitting outside, taking her down the hall to the aviary and the fish tank. She's finally going to get her hair done at the on-site beauty salon next week, so I'm hoping that makes her feel better too.

At this point I'm continuing with my plan to fly home every other month and spend a few days with her. And Jo, thanks for the suggestion; I will definitely call a care consultant. 

JJ401

But she gets sad and depressed all the time about "being alone," no one around, nobody cares, she just wants to go home, etc.

Realize that these complaints will happen wherever Mom is. All of these are common complaints. You could visit for hours and if your brother arrived five minutes after you left, mom might say that she hasn’t had a visit in forever. 99.9% of people in a snf want to go home. 

If you move Mom either the complaints will resurface or new ones will appear. You can’t make Mom happy. The only way to make Mom happy would be to fix her broken brain — that you can’t do. Mom is Medicare qualified. The facility is providing good care. Your brother is local and visits often to check on things. 

Sometimes you have to just do what you know is right. This is one of those times. Bringing your Mom to your home is not sustainable. Leaving Mom there is the right choice. You’ll visit often. Your brother will keep you informed. You are doing the best you can under the circumstances.