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Delphi373 Asked October 2022

What do you do for someone with dementia who is physically strong, with a robust appetite, but keeps getting up and is a fall risk?

My father was admitted to a nursing home in early Sept. We thought he was not going to make it - he was admitted from an ER initially for rehab. He definitely improved - but then started on psych meds which heavily sedated him.


 


I worked with psych to get his meds reduced, and now he's much improved as far as awareness and can feed himself, has a good appetite, and actually was singing last Saturday with the activities director! But he's also actively hallucinating and still on 100 mg of Trazodone. Also, and this is the major issue - he gets up all day EVERY day from his wheelchair and won't sit back down for the nurses. In fact, they tell me he's getting combative.


 


When I visit he's fine - I wheel him outside, he relaxes and chatters - mostly nonsense but I some of it connects. He KNOWS who I am - says my name and talks about my siblings - but the words he uses are often wrong.


 


But now the nursing home called me and they're desperate. I know they are- they've called me almost every day over the last week to talk to him, talk him down so to speak as he just keeps trying to get up and move around. They don't know what to do. I told them I'm willing to try some other meds - I'll work with psych! I'm not against that and as I've mentioned he's on 100 mg Trazodone now. But they were like implying that they can't handle him the way he is now...that maybe we should bring in HOSPICE!?? That Hospice can use drugs they "don't have access to."


 


I was just reading on this forum folks' opinions on hospice and that definitely does NOT sound what my Dad is ready for. He just ate 5 muffins on Saturday and was singing with activities director - she left me a cute VM and he was saying how he misses and loves me.


 


But I don't know what to do? I also asked he get transferred to another nursing home as there's one that has more staff and is MUCH better than this one...but it has a waiting list. But I'm afraid they may not take him 'cause the social worker put his package together and God knows how she depicted him.


 


He's also a Navy vet... we've thought about the VA but I don't know if that'd be a better fit?


 


I just don't know what to do? I mean I know we need to talk to psych - obviously tweak the meds - but could there, would there be any med that could help with the getting up from the wheelchair all the time, but not totally zonk him out? I mean I think if they actually WALKED with him outside he may chill out...but I can't say for sure. The social worker is telling me this may be a sign of the "next stage of dementia" and that folks decline after this. But my Dad used to walk EVERY day around his AL and I think it's more that he wants to walk but they're just not letting him 'cause of the fall risk...


 


Ugh...any help is MUCH appreciated. Thanks for hearing me vent.

Evamar Oct 2022
The first clue would be social worker telling you could be next stage of dementia. They are not medical staff, sure, they recognize some signs but they should not give their opinion.

lealonnie1 Oct 2022
Delphi, Trazadone in a high dose is an anti-depressant (150 mg a day at first, not to exceed 400 mgs per day). In a lower dose (50-100 mgs) it's prescribed as a SLEEP aid, making most people very groggy the next day.

My mother had advanced dementia & was wheelchair bound; unable to walk at all. Yet she STILL insisted she COULD walk and would try to get up from her w/c all the time. She fell 95x while living in AL and then in Memory Care AL! Honest to God, my cell phone rang constantly with them calling me about one of her falls. It was giving me SUCH trauma and stress every time my phone rang, I can't even tell you.

When dementia is present, there is no way to stop the elder from trying to get up from their wheelchair. No 'medication' is going to stop them, unless you zonk them out to the point where they're comatose. Literally. And in bed. Even then, they'll try to get up out of the bed and fall. That's what mom did. We had her on Ativan as her Sundowning got very bad, and still she'd fall; out of the wheelchair, out of the bed and off of the toilet. You may want to stop the Trazadone and see how dad fares; if he's on it as a SLEEP AID, is it helping him sleep? If he's on it as an ANTI DEPRESSANT, he can be switched to something else like Wellbutrin which helped my mom A LOT and had no adverse side effects. This is a matter to talk to his doctor about: find out why he's on Trazadone in the first place! He could be having hallucinations b/c his dementia has advanced to a higher level, too...........that can happen without warning.

I guess I don't understand why this SNF won't let dad walk around with a walker b/c he's 'a fall risk'. All elders are fall risks, really. If he were to agree to use a walker, would they allow him to walk around then? Maybe you need to set up a meeting with the SW or the DON and throw that idea out there; that you are ok with dad walking around, what do THEY need to have happen to okay it? They can't expect dad to sit in a wheelchair all day 'because he's a fall risk'. The man has dementia and won't agree to THEIR rules, you know? Even though my mom fell ALL the time, I didn't blame the Memory Care.....it wasn't their fault she fell. It was just one of those things that went along with dementia. This is why the SNFs attitude about your dad doesn't make sense to me. But I'm not the one running the place either.

Which is another matter to discuss: hospice. A hospice evaluation can be ordered by your dad's doctor at any time. It doesn't mean he's imminently dying; just that he may be approaching the end of his journey here on earth and thought to have 6 months left to live. Hospice can and DOES have ways to help an elder that a SNF or a Memory Care ALF cannot. They can give him a hospital bed with a bolster pillow on it to prevent him from falling out; a different wheelchair that tilts him BACK a bit which also prevents him from being to get up out of it quite so easily; things like that. They will provide him free meds (but you'll be contacted first to approve or disapprove them) and incontinence supplies as well; Medicare pays 100% of the costs. Plus, there is that extra layer of support hospice gives dad by sending in nurses, CNAs to bathe him, the chaplain, the social worker and so on. There are extra hands and eyes on him that aren't there NOW. The RN was so wonderful with mom, and so was the CNA who came in 2x a week to bathe her, I can't tell you the relief I felt knowing all those hospice gals were there FOR her (in addition to the regular Memory Care staff). They'd call me and we'd chat about how mom was doing and whether she needed extra Ativan for her Sundowning, or whatever. Don't be afraid of 'hospice'.........it's an extra layer of support for you and for dad, that's been my experience using them twice for mom & dad.

Wishing you the best of luck with a tough situation.
Delphi373 Oct 2022
Hi lealonnie - thank you so much for your kind and detailed response! I can't tell you how helpful it is to be able to ask questions here and get such thoughtful and considerate responses! And also just to be able to vent to others who KNOW what it's like.

Yes the Trazodone I'm learning is very strong. Yes maybe something like Wellbutrin would be a much better choice as an anti-depressant - I'll ask about that. I'll also suggest the walker and try to ascertain why this wasn't suggested.

And thank you for that information about Hospice - I don't think he's at the point yet...but someday he will be and knowing this is extremely helpful thank you!

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BarbBrooklyn Oct 2022
There are reclining wheelchairs that make it very difficult for patients to get up.

There are also a WHOLE lot of other psych meds; is there a psychiatrist who is checking in on your dad and doing the prescribing? That was the set up we had at my mom's NH. It's not just Hospice that has access to anti-psychotics.

And remember that UTIs can cause delusions and hallucinations...
Delphi373 Oct 2022
Hi BarbBrooklyn - thank you for your reply! Yes we're going to have to look at adjusting the psych meds...we'll consult with the psychiatrist.

And yes checking again for the UTI is a must - thank you for the reminder!
Delphi373 Oct 2022
Thank you freqflyer! That's good to know. Yes they just don't seem to care. And they're horribly understaffed. I think his hallucinations are from the Trazodone - he NEVER hallucinated like this before - it's totally new after he started these psych meds.

Thank you SO MUCH for these tips. No one has even TRIED to come up with suggestions apart from drugs for me. I can't even get them to put feet on his wheelchair. His feet get dragged on the floor when I'm trying to wheel him. Oh - and I brought him his hearing aid and they NEVER put it in his ear. So because he's mostly deaf without it he can't respond to commands. But they literally don't care. They don't have the time. I'm trying to get him OUT of this horrible place. I would NEVER had him put there but he was put there 'cause they're also "rehab" and he was brought for "rehab" but then they said he couldn't go back to his AL. It's SO frustrating!

freqflyer Oct 2022
Delphi373, sounds like the Staff at the nursing home is limited on their knowledge of dementia.

My Mom was a major fall risk, and her nursing home tried many different things to keep her from trying to stand up and walk [if she did stand up she would crumble to the floor].

One thing that worked for her was when she was sitting in a wheelchair, the nurse put a pillow under her knees. It would take hours for my Mom to finally get that pillow out, but at least he wasn't falling every few minutes.

My Dad also was a fall risk, and he used a rolling walker which was a great help for him. If he felt like he was going to fall he would sit on the seat that was attached to the walker. Of course, there were time when Dad forgot to use his walker and he found himself laying on the floor. He did wear an Alert pendent that was supplied by the senior facility.

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