Rehab in late stage

CarolynATL

My dad has been in memory care for about four years.  The past month has been a roller coaster of increased decline and emotions, with me coming to grips that I have been in denial about just how advanced he is.  Last week we saw a dramatic plunge: unable to wake, unintelligible conversation, increase in hallucinations, requiring multiple prompts for usual tasks. He was still able to walk with his walker.  He went to ER to rule out anything that could be contributing (besides the disease).  In total, he's been in a bed for a week.  Memory care will take him back after a rehab stint to regain some movement.  

I wasn't happy about the care coordinators finding him a facility, so I started making calls to everyone.  At the end of the day, there is only one facility that will accept him.  It's not awesome and not close.  

I'm imagining the worst, and what I really need is strategies.  What should I expect?  How much should I be involved/present?  What do I need to advocate for?  What am I just going to have to let go of?  

Thanks so much.

terei

I really isn’t clear what his condition is.  ‘Unable to wake, walk, speak + hallucinating’ sounds very stage 7 to me from your short post.   I would have a hospice assess him.

dayn2nite2

Expect a short stay in "rehab" because they have to agree that he is showing progress in order to continue it, and with this disease, especially in someone who is later stages, is futile.

Is the MC prepared to take him back if he is not ambulatory?  If so, great.  If not, where would you place him?

CarolynATL

That's a great question.  I guess I haven't thought past that.  I am waiting on a call from MC on another topic, so I'll add it to the list.  Would skilled nursing be an option?

CarolynATL

terei wrote:

I really isn’t clear what his condition is.  ‘Unable to wake, walk, speak + hallucinating’ sounds very stage 7 to me from your short post.   I would have a hospice assess him.

I'm not clear on the numbered stages, but that sounds about right.  At the beginning when we thought he'd go directly back, I engaged a hospice agency that works within the MC.  But are you referring to a hospice facility?

CarolynATL

dayn2nite2 wrote:

Expect a short stay in "rehab" because they have to agree that he is showing progress in order to continue it, and with this disease, especially in someone who is later stages, is futile.

Is the MC prepared to take him back if he is not ambulatory?  If so, great.  If not, where would you place him?

Good question, I'll put it on my list to ask MC.  What would be typical?  Nursing home?

towhee

Should you be involved/present- Yes, more so the first couple of days. The only info they will have is what the hospital sends them and that is not much, so you are an information provider. You need to know who will be working with your LO, and their phone #, especially the nursing supervisor, also when medical staff will most likely come by. You have experience with a facility which should help, but often PT, OT are contracted out and you could be working with two different organizations who don't coordinate very well.

What to expect- (this is the process I went through, I think it is fairly standard) Expect a lot of paperwork to sign and a lot of information thrown at you very fast. There should be a meeting the day your LO moves in with facility nursing staff, social worker and/or admissions director, and a PT representative. Verify that the information the hospital sent is correct, especially Medications. The PT rep should ask what your goals are for therapy. You need to let them know what your LOs capabilities were before they went to the hospital. Was he feeding himself, brushing teeth, etc, and his walking ability, how long he was in bed at hospital, did he stand or transfer at any time while at the hospital. Your goal is general strengthening, and to get back to his baseline. Don't indicate that you will accept something less. However, be aware yourself that this may not happen. Do find out what your current MC will accept and if there are other MCs in your area that may take someone with fewer abilities, and definitely look into nursing homes.

Keep an eye on any medication changes, some medications may impair the ability to participate in therapy. Your LO should be prescribed PT, OT and possibly a speech therapist. They will evaluate your LOs current ability either the day of admission or the next morning. Since your LO might have trouble walking PT and OT might work together for a while, which might limit your LO to one session (app one hour) a day. PT is responsible for walking, OT for just about everything else. After the first session you will be working with PT assistants. Be nice to PT staff if at all possible, you can't really pick up and go someplace else, and they can decide that your LO cannot participate in therapy.

CNA staff should check on your LO about every two hours. They will likely want him in briefs if he is not already, but you can ask for an alternative. If in briefs, let go of expecting him to be dry each time you check and if you think the staff is sitting around too much keep it to yourself. (Insert smiley face). Best Wishes

This is based on my experience, others advice may not be the same.

zauberflote

Hi Carolyn-- I'm not sure I'd wish rehab on someone who's in your dad's situation... my MIL, who was at home with 24/7 care was referred to rehab in her late 80's, after either a stroke or a hip pinning, I don't recall. Her children took her home after a short stay because she was terminally depressed, and didn't really have the lung power (COPD) to comply with the energetic regimen the staff wished her to be on. She was still a smoker at that point, sk was dealing with withdrawal as well as everything else. 

My mom was in rehab for 8 weeks (we think some of that was the facility grubbing for Medicare dollars) after a catastrophic stay in two hospitals which took most of her prior strong mobility and all of her spirit. My brother visited her frequently, and stayed in her room in AL on the same campus. Thankfully, Mom returned to baseline and above physically, to the point where we engaged her a geriatric personal trainer, with whom she had a grand time. 

At 91 Mom's hip broke, we did the replacement surgery, but MC (where she was by then) had no problem taking her back with the caveat that they couldn't care for her healing incision. We hired round-the-clock CNA's just to make sure Mom didn't try to get out of bed at night. We then found a perfectly wonderful person-- a mobile, self-pay PT who specialized in both ortho and dementia. He got her walking again. She lived 6 more months. But she was mobile and very responsive when the hip broke. If she'd been more as you report your dad, I doubt we'd have chosen the replacement surgery. 

Mom's MC was "age and die in place unless you need skilled nursing" such as catheter, feeding tube, ventilator. Mom didn't want any of that, and nor did most of the other residents. The MC took care of one bedbound resident after another until they died. Is your dad's MC a different arrangement?

The one thing I would "let go of" would be the fervent hope that dad is going to get better. 

MN Chickadee

I'm sorry for what you are going through. Sometimes our LO do just have a dramatic decline out of the blue. I would expect the rehab stay to be short. The patient has to be making active progress to stay, and it sounds like that will be very limited in his state. And rehab facilities are not usually well trained in dementia nor have the staffing ratio to have someone with him all the time. Some PWD have terrible rehab experiences. You or another family member may need to spend considerable time there. 

It sounds like the MC is not set up to care for people until end of life if they are requiring him to gain strength to come back, so I would definitely be looking for a new facility. My mother was in two MC facilities over the years and both could accommodate people until the end. Many folks were bedridden for weeks or months. The aides were skilled at feeding thickened liquids, transferring them to broda chairs, strategies to avoid bedsores, bathing them in bed. Usually hospice came in as well to add another layer of service. I would be looking at either a skilled nursing home or a memory care facility that has an RN 24/7 and can handle late stage dementia. And bring hospice in; they will be most skilled in keeping him comfortable. They serve people no matter where they live. 

Rescue mom

I’m unclear on some issues, but….Hospice can come to the MC facility (at least all I’ve ever heard of), he does not have to go to a specified Hospice facility. That said, all hospices IME gave comfort care only—which was huge, but basically they let the disease take its course, while keeping the patient pain free.

My mom was in an MC that let residents stay until death, as long as no skilled nursing was needed. She got some PT and other therapies there, in place. With her dementia, we decided earlier there would be no surgeries or extreme measures to prolong life. And with hospice helping, she died there. I cannot imagine having to move her around a rehab place, or anywhere much, any back and forth, at her late stage.

But again, her MC allowed them to stay, and Hospice helped hugely with that.

Ed1937

You have some excellent feedback already. I'd just like to add that if there are papers to sign, be very careful that you don't sign anything saying you are responsible for payment. If there is a place for responsible person to sign, just write or print his name. They can't force you to sign yours,, and that could save you major headaches in the future.

CarolynATL

I want to thank you all.  Your comments were very helpful in shaping our decisions over the last week and going forward.  I finally convinced our own memory care facility that he didn't need rehab, and they agreed.  We brought in hospice, and it has been a gigantic weight lifted all of our shoulders.  I feel like I can now sit back and accept where he is physically, and know that he's in the best place.  And I can breathe again.

mommyandme (m&m)

Carolyn,

So glad you are feeling some peace now!  Thanks for sharing.