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Caregiver: Dealing with delirium, confusion after long hosptial stay
My father had a stroke in January 2023 and spent 2 months in the hospital/rehab. He has been home now for just over a month. While in the hospital, he developed severe delirium. Now that he's home, he's still dealing with some confusion, agitation, paranoia, etc.
I am his one and only caregiver. Family is not around and hasn't been for many years, he doesn't really have any friends (we realized that when he had his stroke and no one checked on him).
He spends his days sitting in front of the TV, not knowing how to change the channels or the volume. He gets up to sit outside on the veranda and he truly believes he sits there to have a cigarette (he does not). He refuses to bathe and has slight incontinence issues. I don't know how to convince him to wash up and change his clothing because there is now a lingering smell near him and it's embarrassing.
He hasn't smoked since his stroke (even though he doesn't believe that) so he replaced his cigarette cravings with drinking 2, sometimes 3 cans of Coca-Cola every day. He does not eat vegetables and very little fruit. He snacks on cakes, cookies and brownies. The only reason we still have this stuff in the house is because I'd rather he eats those sweets than nothing at all. Even when I make a homecooked meal, he barely eats it unless it's fried food. He does not want to drink Ensure or any other drinks similar to that.
He walks very slowly. He gets slightly out of breath when he climbs the stairs. He sleeps a lot less than he did pre-stroke. He drinks water, but probably consumes more Coke as his main liquid.
My father has a list of medical issues such as chronic obstructive pulmonary disease, coronary artery disease, ischemic cardiomyopathy, peripheral vascular disease, hypertension (his blood pressure was still high while in hospital and on medication), dyslipidemia, has smoked 2 packs of cigarettes every day for more than 60 years (quit recently). He had two heart attacks in his lifetime, an abdominal aortic aneurysm which was repaired less than 10 years ago.
My biggest concern is that, due to his confusion/delirium, he does not take his medications properly. I bring his medication daily and he will most often set them down on the table and claim to "take them later", but most of the time, those pills are still sitting there the next day or sometimes he throws them in the garbage without realizing. He has gone days and weeks without the medications. I try to encourage him to take them as soon as I bring it to him, but again, because of the confusion, he doesn't understand the importance of it and doesn't understand why I'm insisting. When I explain why it's important, he says "a few minutes later won't make a difference". He will eventually get very fed up with me and angry, so I'm forced to back off.
I know most people will encourage me to think about putting him in a home where he can be watched 24/7 and have nurses around just in case. But, he would absolutely never in a million years agree to that, he would put up a fight if I brought it up and he would resent me if I forced it. He's enjoying being at home where he knows the environment. But I also worry that I will find him lifeless one day because of his poor cognitive function, his lack of health eating, lack of exercise and worst of all, lack of medication.
His doctor already performed a test to check for any infections to explain the delirium. He has no infections. His doctor also explained the importance of everything mentioned above. My father is and always has been very stubborn and prideful and at this stage, I don't know how to handle it.
I have never been so stressed and sad in my entire life. He is my only remaining parent and I fear he will not survive very much longer.
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Hi Becky, thank you for your reply.
I am not sure if he is safe at home. He's able to climb the stairs and use the washroom on his own, however, I've noticed some incontinence issues lately. He also doesn't bathe, his last shower was in mid-March only because a PSW was assigned to him. He hated that so much that he forced me to cancel it. He might've brushed his teeth twice since returning home from the hospital in March as well.
He can get himself dressed but his shirts are usually inside out and he usually puts on two pairs of pants and two shirts/sweaters. He fidgets around with items, misplaces things all the time. Today he washed the dishes, including an avocado seed that was in the sink, as well as two leaves from a flower in the kitchen. He sometimes goes to the basement and knocks on the tenants' door looking for a box of tissues, truly believing we keep our tissue boxes in the tenant's apartment.
I hate to say it but the worst part of all this is the fact that I don't know how to handle it. I don't know how to redirect him when he's confused without irritating him. I don't know how to let go of my stress because I am now stressed 24/7, I even had a panic attack in my sleep a few nights ago! I suddenly woke up with my heart racing and feeling as though I couldn't breathe.
If he gets worse and worse over time, I will need to look for other options to help him and to help myself. But as of right now, I have no idea what to do.
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1 ReactionYou would not be "sending him away." My mother was in a facility but I was still her main caregiver, but I could drive away and have respite. You would be making him safer and probably happier, since more people would be around and there are activities. You can be a daughter again.
But I know you are not ready. Try to be ready, soon! In the meantime, find out if you need that power of attorney invoked by an MD or two in order to place him yourself.
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2 ReactionsThanks!
My father would be miserable anywhere other than home. Being around other people and also the option of activities wouldn't interest him at all. He would much rather spend his days doing nothing. I cannot see him engaging in activities with other people.
If I have no choice but to have him somewhere safer than home, I would hope it's somewhere with nurses or some kind of help when/if needed. I worry he would wander out of the facility and get lost into the streets because of that ability to be free.
It's just all so confusing at this moment.
You are a very loving daughter. I had power of attorney for medical. That is not the same as guardianship. I would imagine patient rights in Canada are similar.
It sounds like you are trying to use logic to reason with your father. And also that you expect him to remember what you said. But his brain is not working like a regular brain. Also, you want to keep your relationship pleasant and intact even if you have to make very difficult decisions. In my experience this is not possible with a person with dementia.
You can do a few things now, but they may not work. You can put signs on things with directions, we tried taping paper over buttons on the remote that said No, or Off or On. We made simple memory books with positive statements and read through them with him at visits. Try a google search on Communicating with a person with dementia.
You asked how will you know when he needs more supervision? I think you may already know that answer. It sounds like he needs it now.
I wish we could sit down together and have a good cry. This is hard because you love him and you care. You need professionals to complete evaluations, an attorney to help you with options, and a few good friends to support you. Just start with one thing, the attorney or a social worker and things will start to feel better. One decision at a time.
Another option is to do nothing. One sister said maybe it would have been better if we had just left Dad alone and let him pass away in his apartment doing what he wanted-drinking, hoarding, sleeping on the floor, not bathing, eating spoiled food.
I am so sorry for anyone going through this.
Is there one thing that worries you the most? Our biggest worry was Dad’s driving and his unsafe car. We started there.
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1 ReactionI would suggest a memory care only facility where he can go outside but there is a fence. Of course there would be nurses around, and other staff.
You mentioned that he went to the bar to socialize so I thought he might like seeing people. Assisted livings even have a bar with happy hour.
My mother kept to herself, sat outside, and went to the bar. She hated activities and bus trips for ice cream etc.
Regardless, the possibility of wandering is scary. And in the US you can't just "do nothing" without possible involvement of the state- unless problems are kept hidden and even then, through other professionals.
Finances can be an issue. Can you contact a local senior services agency or a support group?
Even though you are still waiting for a diagnosis, when I typed alzheimers support canada into a search engine, I got:
https://alzheimer.ca/en/help-support/programs-services/find-support#:~:text=With%20programs%20and%20services%20available%20across%20Canada%2C%20the,Alzheimer%20Society%20for%20information%2C%20programs%2C%20services%20and%20support
I wouldn't want to be doing this alone; you shouldn't have to!
Hi, thank you!
I really am struggling alone. Today I had a full day of work (working from home). It was the first day that my father snuck out of the house and walked to the nearest bar for some beers, knowing full well he isn't supposed to drink any alcohol at the moment. He ended up walking there with house slippers, soiled clothing and no wallet, keys or cell phone.
I've realized today that I cannot keep him safe 24/7 and I need to do something. I know he will be safer and better taken care of in a home where there are nurses and help whenever he needs it, plus I will also have some peace of mind, finally. But, it will be absolutely impossible to convince him that he needs to leave home and move into a facility better suited for him. He will never, ever, ever, ever consider it, no matter what. So in that case, I have no clue what to do. I cannot pull him out kicking and screaming and he won't voluntarily go either.
I feel trapped.
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3 ReactionsYou may have to deal with social workers if someone reports that he is wandering around in slippers etc.
You can talk with his doctor, find a place for him, and call an ambulance.
Some people take the person out while another person moves furniture and personal stuff in the new place.
These are all hard on you-and him. In my opinion and experience it was easier moving the parent from rehab or even a geriatric psych. unit, to the new place. Both situations would involve professionals who could advise you and actually make him move.
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2 ReactionsThe situation of not wanting to eat anything but sweets sounds like an Alzheimer's thing to me. Or at least I've read that this is often the case. And seen it in some people I know with Alzheimer's.
Yes, the wandering makes for an even more stressful situation for you! Very rarely, when someone becomes disoriented enough, a large black area rug outside the front door can look intimidating, like a gaping black abyss that you don't want to step into. But your dad is probably not at that point yet. Just to get through the next few days, you may have to lock the door and hide the keys, as awful as that sounds. Just so you can work a couple of hours without worrying where he'll go.
@jprust had some excellent advice above, from someone who has walked in your shoes.