Update after 4 months in ALF

ICalE

It's been four months since Mom (84) with dementia moved to the ALF. She's on Risperidone, 0.5mg twice per day, and other meds prescribed by her cardiologist for heart failure.

She is deteriorating and I'm just not sure if it's a side effect of the Risperidone or what. I feel guilty quite frequently.

She has been back to the hospital several times including a stint at a SNF to recover from RSV.

Recently the ALF tells me that they have to feed her as she can't really cut her own food anymore let alone dress, toilet, bathe, or anything else. They say she needs to have hospice care in order for her to stay as it takes two people to assist her (she's 125 lb). The director of the facility also thinks it's time for MC. She seems effectively bed ridden to me and looks so weak.

We got off the Medicaid waitlist very recently. In another 6-8 months I'll have to sell her home to fund her stay.

This is really just tearing me up. When I visit she sometimes says things indicating that she thinks she's home like "I just checked the mail" or "I just got back from the gym".

Could such a low dose of Risperidone cause her to lose most of her mobility or is this just progress? She still says things like they're trying to push her out of the window too but at least she's much calmer about it.

M1

Sorry to hear your update. It's not the risperidone causing this. Hospice sounds very appropriate and her Medicare will cover it, but they will not provide around the clock help. Can't hurt to have her assessed and see what they will cover, though.

towhee

Most ALs really cannot meet the needs of someone who can no longer transfer from bed to wheelchair with just one person assisting, and hospice really will not be much help there. Hospice will provide someone to bath her twice a week and a nurse visit once a week, but very little in the way of daily care. The extra oversight and care they do provide is very valuable though. They will also provide medications for pain and anxiety.

When an older person has multiple medical problems/infections, and location changes, it can accelerate the dementia and physical decline. If you have concerns about the medication, you can express your concerns to the doctor, they might reduce the dosage for a couple of days to see if there is any improvement. One thing you might also do, since she has had so many changes in her care locations, is to get a list of her current medications, compare it with your list from before she started the hospital trips, and/or ask the doctor to review her medications. With all the transfers, medication errors can happen.

We cannot stop dementia, and while regret is unavoidable, you have nothing to feel guilty about.

bjohnsen3869

It sounds like she should have been in MC yesterday. I would definitely move her. They can provide more one on one care. The others are right about hospice. Not round the clock. They come in for 30-45 minutes twice a week to wash them and nurse once a week for vitals about 30 minutes. Very helpful medically but not helpful as far as daily activities such as dressing and eating.

I feel like you could question medications all day long and take them off and on and try different things but the fact is that this disease is progressive. It will, at some point, get to this, no matter what meds she is on. I would think it is more important for her to be calmly progressing than anxiously progressing.

Do not feel guilty. It is a non productive, exhausting emotion. You did not zap her with this disease. We are fighting a battle we can’t win. We are doing the best we can. Give yourself a break. Hang in there.

ICalE

Hospice switched her to crisis care around the clock for about 5 days since she stopped eating and drinking a little. They got her am adjustable bed to help. They lowered the Risperidone and it has helped - she's now eating and drinking again, but hardly talking.

The hospice nurse today told me she needs total care, that she does not help out at all when doing anything. The ALF has not contacted me about moving her to the memory care side since first mentioning it. I don't know what's next. If she needs total care as she says does that mean a nursing home? The nurse also said she seems to have stopped declining for now, so crisis 24-hour care ends in the morning.

Olly_Bake

Hi ICaIE. Just reading this post about your mom. I don’t know what we can do about guilt. It’s just part of a caring heart. Wondering if we’re doing enough or not enough or the right decision or the wrong decision. In the end, we can only do the best we can and what we think is right.

Are any of these medications newly introduced? The risperidone? That’s the one you mentioned hospice is tapering down on and there is a glimpse. Dad was put on 100mg of Seroquel once upon a time. His body could only handle 25mg. Same thing for lorazepam 1mg. His body could only handle 0.5. So I do go with medications first if there is a change.

Towhee is also correct in saying location changes can accelerate dementia and physical decline. Whenever Dad would even come out of the hospital from a stay, it would take a week or so to see if he would bounce back. He is 89.

For some of the things your mom says when she is talking, just keep playing along because it does break our hearts. Dad, I just came back from seeing my brothers in Dallas. Me - really? Who went with you or why didn’t you wait for me? Dad, I don’t have time to be waiting for you. With your mom saying things like, “I just got back from the gym”. Does that assisted living facility offer physical therapy? Could that be what she is talking about? Either way, play along and it will get a bit easier with the fibs. I prefer fibs now over causing more upset.

24-hour care just means someone needs to be with your mom at all times in case of emergencies, for reporting purposes, to help monitor, and more than likely my understanding to do things the facility normally would do like help with feeding and bathing.

Many facilities and hospices will probably encourage a nursing home.

ICalE

As of today no new neurological event has been detected. She is now showing signs of Parkinson's such as stiffness and less responsiveness, but the neurologist says these are also side effects of Risperidone.

Her psychiatrist prescribed the Risperidone originally. Several ER doctors during the last five months have also sometimes prescribed Risperidone. All prescriptions are fulfilled by the same pharmacy. The ALF administers whatever is at the pharmacy. Hence, she was taking triple the recommended dose of Risperidone.

It has now been scaled back to only 0.5mg in the evening, the smallest dose ever. She seems to be rebounding slightly. She is more verbal, but she is still stiff.

Physical symptoms:

1. Can chew and swallow but can't cut her own food.
2. Can't attend to any personal hygiene activities.
3. Can't dress.
4. Can't ambulate.
5. Incontinent.
6. Can't toilet.

Other symptoms:

1. Memory loss. No recall.
2. Can't plan or solve problems.
3. Confusion with time and place.
4. Misplaces things and can't retrace. Blames others.
5. Withdrawal from social activities.
6. Changes in personality. More evident before Risperidone. Could be verbally aggressive to myself and others.
7. Delusions and paranoia.

The ALF will allow her to age in place with the help of hospice. The staff-to-resident ratio is 1:10 at night and higher in the daytime. Their MC unit has a higher ratio but I'm not sure what it is. I have the option to move her there too.

She has heart failure, hypertension, and brittle bones. Otherwise, she has no medical complications such as needing oxygen or a feeding tube. I thought this was like the criteria for an SNF.

So I'm avoiding an SNF for now. But is the writing on the wall? We are in the Miami/Hollywood, FL area. If anyone can recommend an SNF that would be great.