Caregiver: Dealing with delirium, confusion after long hosptial stay

Delirium is fairly common for older folks when they are in a hospital or rehab, away from home. They lose memory of home. Though both my husband and mother had stroked, their confusion from stroke was somewhat different from the delirium I saw with dementia. Sundowning is common for all.

He needs his medication and because you are the daughter, he can resist you. Did he have any services for home care? Can you hire someone? I know it costs and Medicaid only kicks in with assets under $2k.

But it seems clear a third party is needed here. Another possibility is hospice. Is that possible? You can be on hospice for months or even years. That would mean an aide, nurse, social worker, volunteer and chaplain in my area.

Would a rest home or assisted living be acceptable? (I doubt it) Is he competent? Do you have proxy (invoked?), Power of Attorney, joint bank account? You will need these things.

Do you have a local council on aging to seek support? I just came from my long time group and it is so helpful. I feel for you! YOU are important too and so take care of yourself as much as you can. I know that is hard.

Hi, thank you for your reply!

The hospital said it was delirium, especially since it started suddenly about 2 days after being admitted. It's just far too similar to dementia so it's hard to know what is really going on. I know Alzheimer's runs in his family too, so there's a good chance now.

I actually live in Canada, so I don't know how similar our options are and what costs are associated with that. I'm just a bit disappointed that the care team at the hospital sent him home without giving me any support or information for anything at all, so I don't even know where to look for help.

If my father was not a highly stubborn man, I would already have help right at this moment. I cannot, for the life of me, imagine him getting up and agree to be taken anywhere else other than home. I am his power of attorney for his personal care, I have the legal right to place him in any kind of facility if needed. But, it would take a village of people to take him out of the house.

I feel like my only option is to keep him here for as long as it is safe to do so, but how do I know when it is no longer safe? He can move around just fine, he does not leave the house at all but I worry that the confusion will cause him to wander off at night. He does not have a set sleep schedule and wakes up every couple of hours, remains awake for 5 or 6 hours and sleeps again for 1-2 hours. Yesterday he was sitting on the veranda at night and he had closed the front door behind him for some reason. Luckily he did not lock it, or he would've been in trouble there.

I'm just lost. I feel trapped and defeated.

Do you have any services in your area? Support groups?

If it becomes too dangerous OR too burdensome for you, you can make arrangments to have a facility evaluate him, accept him and then call medical transport/ambulance whatever is used where you are.

The delirium with dementia calms down once the person goes home. For my mother, who had both a stroke and dementia, it took about two weeks.

I really hope you can find local support. Around here the rehab generally has social workers who help with a plan for discharge. Next time he goes to rehab,if ever, maybe he can be transferred to a facility rather than home!

Hi there!

There are support groups. I'm working for an agency that has several support groups for stroke survivors and/or caregivers. I am doing what I can but even with support groups, the reality still remains that I am heartbroken by what is happening at home.

My father once told me when I was much younger to never, ever put him in a home. And now that I'm older, I understand that maybe sometimes that might be the best option for a person but that guilt would be enormous.

My dad has had delirium since January, it's nearly May and he's more confused than ever.

I've already decided that if he returns to the hospital and gets delirium all over again like the first time, I cannot care for him at home by myself. The first time around, I spoke with the social worker who advised me that having him come home would be better for him. I agreed, but now that things are getting worse, I'm more worried.

I was at my caregiver's support yesterday and we were discussing how often our parent was/is happier in a facility. That also would allow you to be a daughter. But I know it is hard, and sometimes expensive.

I am confused by the term "delirium" for his continuing state. A lot of time we use that term for a short-term, temporary state induced by a hospital stay, and it includes sundowning. Also, those with dementia are more prone to it of course, and things can settle down once home, as I wrote before. This is not settling down!

Is this mental state a result of the stroke itself? It sounds more long term.

Is your power of attorney invoked? I had the primary care doctor fill out a form that in our state, invoked the medical proxy and that automatically invoked the P of A so that I could speak, sign and act on my mother's behalf.

Do you know why the social workers at rehab thought he should go home with you? Did anyone take your well-being into account? I always had trouble putting myself first, but looking back, I wish I had- at least sometimes, a little more. It is a lot of lost years and health effects. I understand the conflict.

Thanks for your comment!

His care team at the hospital said that delirium can very much last months, sometimes up to a year or even more. My father was never diagnosed with dementia, but that's not to say he does not have it because Alzheimer's does run on his side of the family. I will be bringing up this topic during his first post-stroke follow-up in June.

I am his POA. It states that I can make medical decisions on his behalf if he is unable to. Even with delirium/confusion right now, I don't know if he is alert enough to be able to make the decision on his own. In what condition must one be to not be able to make their own decision? I live in Canada, so I don't know if there is a difference between my POA to an American's POA. I would be able to ask the lawyer anyway.

I expressed concerns to the social worker about having my father come home, specifically because he was attempting to leave the hospital to "go for a smoke" outside. He did this often enough that I became terrified that he would wander out of the house in the middle of the night and I wouldn't know. When I expressed these fears to the social worker, she insisted that him coming home would be best because he should be in a familiar and happy environment and also because it wouldn't be reasonable for him to go to a short-term care because of a weird rule that he would need to achieve a specific goal to be accepted. For example, some patients who leave rehab but are not ready to return home would go to a short-term care in order to achieve a goal such as learning to walk without a walker before going home, or being more independent again. We could not use my dad as "waiting for delirium to clear up" to be a reasonable goal. I don't know, it's a bit weird to me.

Anyway, we brought him home and he was improving and now it's gone downhill. If he continues to ignore his medication, I'm sure another health issue will arise, maybe sending him to the hospital. If delirium returns or gets even worse, I would not be able to care for him at home because the way it is right now is already really tough.

@greatwhitenorthgal. This is a really tough situation you’re in. The basic question you should ask yourself is “is dad safe” at home. He doesn’t take his meds, he doesn’t eat, he gets up at night and wanders outside, etc. When I worked as a nurse, we reported everything to the social workers/discharge planners, who, with the family, made decisions. I’m sorry the social worker thought that home was best because it’s a familiar and happy place to be. Yes, it is, but is he safe? Are you safe?
Is there an Agency on Aging in your town? Can you contact them to see what is available?

First, my heart goes out to you. We went through everything like this with my Dad. You cannot make him do anything unless you have him evaluated and they say he is not capable of managing his own decisions. Then that documentation has to go to court and someone appointed his guardian. Just as we were going through that because he took a taxi to the hospital because he thought he was getting a heart transplant. At that point a social worker talked with him and realized he was passing the orientation screenings but was delusional. He was evaluated. At that time I got a call from Adult Protective Services wanting to know what I was doing to help him. He would not allow any help I. His apartment-someone in the building had called social services because he lost his keys and was knocking on windows to get into the building. He ended up sleeping on a picnic table outside when it was very cold and EMTs were called. He was 90 at the time.
He was forced to go to a nursing home-assisted living is voluntary and he refused anything. He sawed off his wander guard twice and left the nursing home in the middle of the night. He finally had to go to a nursing home that had a locked ward.
I know hearing this is painful-people will tell you you should move him into your house, you should take care of him. We could not have done this. He would not do anything we asked-he hoarded food, urinated everywhere, washed disposable depends, wouldn’t shower and only took medication he wanted to. He wouldn’t eat anything that wasn’t prepackaged so you couldn’t sneak medication into his food. It is a long and painful process and I had 4 siblings living right there. We went to an elder care attorney and he helped us with everything. He was paid by Dad’s Social Security after we got Medicaid approved.
Where to start? With an elder care attorney to see what your options are and what you can do.
The father you had is not there anymore-brain damage has changed him. I hope my bluntness will help you get past the grief now and get done what you need to.
All my empathy.

You don't necessarily have to go to court. If you already have medical proxy and power of attorney, the docs (some states want two) can invoke them. You do not have to go for guardianship at that point.

Hi, and thank you so much for all of that information. I'm sorry you had to deal with all of that too. In comparison to my current situation with my father, it seems that the worst has yet to come.

I live in Canada, so I don't know if the rules and court documents and all of that is the same here. I just know that I have power of attorney for his medical decisions, but I don't know if that includes having him in an assisted living or anything of that sort by my decision and not his.

I have worries that it will be getting dangerous now. Just this evening, he told me "well, I think it's time for me to start going to the bar again.". He retired in his early 60s and spent his retirement days drinking at the local bar, coming home to sleep and repeating the same routine everyday. He is bored and lonely staying at home all day long now and is eager to return to that bar to see his friends. I had to, yet again, give him a lecture about how dangerous it is for him to drink alcohol right now and explained that he has been confused lately and I gave the example that he had forgotten where the washroom was. He was surprised and didn't realize he had forgotten that. The bar is walking distance but maybe not for him as he is weak now. I worry he will attempt to walk out and head to that bar and either take a wrong turn and get lost, or not be able to continue the walk and get stuck.

He has a cell phone, but because of his confusion, he doesn't know how to use it anymore and thinks the TV remote is a cell phone. This sounds dangerous to me in terms of getting lost, getting intoxicated and losing balancing, leading to a fall. He's frail. He struggles to stand up from the couch, he's out of breath when climbing the stairs and he can barely hold a plate of food without spilling it.

How do I know when it's time to think of an alternative for him? I would hope that if I ever need to place him somewhere for his own safety that he would be confused enough not to understand what is happening. I know that sounds awful, but that way he won't be so miserable knowing his daughter "sent him away".