Merry Christmas & Happy Holidays to all!
94 yo Dad has Parkinson's, sudden increase of dementia (mild to moderate), and other health problems. Moved to an ALF cross-country (near us) four months ago. Background after questions.
1. What happens if the rehab is not a good fit? Winter storms and the holiday have prevented a first family conference, even by phone; it has been delayed till day after tomorrow. He's been there a week now. He is restless and bored, feels trapped and frustrated, doesn't have anything to do but watch TV, and says he is not getting nearly enough PT. Nowhere to go but his room and the hallway. Lack of freedom is upsetting him. Should we bring items from his ALF, like a favorite chair? He is half blind and can't read without better light. Bring a bright lamp? Not sure what's reasonable since we don't know how long he will be there.
2. Can memory care units do rehab? Or would that be more a private 1:1 visiting PT arrangement in a memory care? I don't know what to focus on first; his rehab needs or finding a memory care that suits him. (I don't anticipate him returning to his ALF, but he doesn't realize or accept that. I try not to talk about it and ask him to focus on getting stronger instead.)
Background: he moved from his own home across country 4 months ago into an ALF, which we didn't realize wasn't a good fit for him until a couple of months went by. He did ok, but after 2 months there got mild covid and had a week in the hospital for delerium and wandering. Came back to ALF, but after a month his mild dementia was worse - and though he had fallen several times in his own home, started to fall more in ALF. (Prob. weakness from hospital stay.) One fall a couple weeks ago cut his eyebrow and they had to call 911 as required. He had another week in hospital, got delerium and started acting out, being angry and not wanting to stay in hospital bed. They gave him Seroquel (antipsychotic), and a full time sitter for a few days until he settled down. (He feels it's his right to get up and go to the bathroom by himself, or wander the hall whenever he wants, and still does. Doesn't care that he may fall. He's always been a very willful guy, not conscious of or caring of his impact on others, is self centered and lacks empathy... and no ability to recognize that his body has problems. This is a lifelong thing. But the dementia is making it worse. )
Yesterday when my brother visited him in rehab, he got upset and said he wants out, for the reasons I wrote at the beginning. He also called a sister (not sure how he got the #!) to say the same thing. He has a fob on his walker that locks any outer doors he comes near, thankfully. I am not anti-drug, but there's a movement in the geriatric care community that is trying to educate hospitals and facilities to better deal with the emotions, acting out and aggression in dementia patients, rather than over-drug them. It is clear they have to do something NOW, though. I also recognize that Dad is caught in this downward spiral of repeat hospitalizations, decline, drugging to make him cooperative, and further decline. I don't know if there's an alternative, but I feel for him in his confusion and illness. I also resent him for not being able to put on his big boy pants and deal better, furthuring how awful his health problems and self-centeredness have been for us in the family. But I know he can no longer think about big boy pants. I'm at a loss as to next steps. I can bring all this up the day after tomorrow on the care plan call, but wanted to get outside opinions. Thank you!
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Fact: SNFs and hospitals are TERRIBLE at dealing with dementia patients. They act like they've never seen anyone with dementia before and are never staffed properly to deal with them.
Because of learning that the (very) hard way with my own mother going absolutely bonkers in hospitals and a seven-month stint in a SNF when her dementia wasn't even that bad yet, I made the decision that she was going to be treated for what ailed her in her Memory Care facility. If they couldn't do it, we weren't going to do it. Granted, had she fallen and broken her leg, we'd have taken her to the hospital, but fortunately, that never happened. She was put on hospice after her last hospital trip, and they handled extensive wound care, a bout of Covid, and diagnosed and treated the onset of gout -- all in Memory Care.
What is your dad being rehabbed for -- walking? If he's been having so many falls and has Parkinson's, you might have a conversation with the physical therapists/caregivers/doctors about whether it would be better for his overall health and safety if he was to go to a wheelchair full-time. That was also something we decided for my mother after she had one fall a few days after moving to Memory Care (long before the hospice phase). She brained herself pretty badly on the corner of a bedside table, and the MC nurse made a good point that we could keep doing this over and over, or we could just go to the wheelchair full-time. She was already in it part-time as it was, but she was clearly losing her ability to walk reliably. It was a good thing to move her into the wheelchair full-time, because she was also losing her vision, was disoriented with her new surroundings, and the distance from her room to the common area was farther than she'd walked in years.
Short answer about PT in MC: Yes, they should allow an outside physical therapist in to work with your dad, but the question is whether it will be beneficial to him.
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There is more than one kind of rehab. It sounds like was expected what is called "acute rehab". That entails 3 hours of therapy a day. If dad can handle that, it's where he should be. Was that explicitly ruled out at discharge?
Find out what facilities near you do acute (as opposed to sub-acute) rehab and start advocating for Dad's doctor to order that.
I have a friend who is blind who fell last year, had a massive brain bleed, surgery and sent to subacute. Even though she could barely speak, she knew she needed acute at Rusk (NYU). She and her family were like possessed tigers. They got her where she needed to be.
We too ended up in the "wrong" AL. We thought because other family members were content at the one we chose, it would be a good fit. Wrong. It was both too klittle, too much and the wrong kind of assistance.
Mom ended up in the hospital and we asked for a psychiatric consult. The psychiatrist, after talking with my mom, described the level of care she needed-- a place where there were other intelligent people, staff always available outside her door and the freedom and privacy to sit with a book all day if she wanted. And someone on staff who would check that she was settling in.
My SIL said "but that's like Independent Living". The doctor said he didn't think the label mattered. In fact, SIL found a wonderful IL community which had the added benefit of having both a geriatrician and geriatric psychiatrist who were on site a few days each week (there was a sister AL facility next door).
It was THAT geriatric psychiatrist who adjusted mom's anxiety meds, explained better how taking them regularly didn't make her an addict, but made them More effective at a lower, regular dose. Those two doctors also insisted that I get mom in for a full cognitive work up, which revealed a previously undetected stroke and a huge falloff in her cognitive and reasoning abilities, which was what was causing her anxiety.
We made lots of newbie mistakes along the way (and kept making them) but atvtge beginning, you don't know what you don't know.
Good luck, Kablooue, and keep us posted!
The rehab is a few minutes from my house, so we brought dad here for Christmas dinner tonight, which was enjoyable. But you can probably guess that he did not want to go back to the rehab. He doesn't feel they're doing anything for him, which is pretty much true the week he's been there, due to a variety of circumstances. I'm not satisfied either frankly. He has a lot of restless energy and no place to go except up and down the halls. He doesn't have a roof deck or a dining hall or common room to go to, and hates his lack of freedom. Supposedly they will be starting him on strength training this week but... we shall see. He wants to do PT, no question, but thinks this place is inadequate. There is the perception that PT is not just a short session per day but intense focus. I have no idea in reality what it entails myself and we'll find out. I think he thinks it's some kind of boot camp with all the attention on him for good chunk of the day. There's your narcissistic entitled thinking. He also thinks that because he still has to pay for his expensive assisted living apartment, he's entitled to go back there anytime he wants. We had to keep explaining that this is not the deal. After a lot of patient convincing from spouse, sister and me, he said "okay, well I don't want to waste your evening, I guess let's go back... But we need a conference with everyone because I don't understand why these arrangements were made and what they mean."
In truth, we were all naive about what assisted living was, and the one we chose in particular... It seemed AL was the obvious next step as a way to convince him to move out near his kids. (He wanted an independent apartment and we said uh, no. We showed him a few ALs and that's how we got him to agree to move. But as I said, none of us really understood in depth what ALs did and didn't do. And frankly I think we got suckered a bit, because as you know, it's big business. I feel they should not have accepted him knowing how old he was and how many health problems he had that were going to become problematic.) It was okay in the beginning, but quickly became obvious it was not what we needed for him, and the move and first hospitalization made him decline fairly quickly.
The rehab nurses say he is being sweet and docile to them and has not acted out (yet)- but they know he's a wanderer and restless and confused. I guess he just makes life difficult for us, his family, instead. But as his Parkinson's dementia evolves, he could get frustrated and aggressive since we saw it in the hospital when they had to restrain him briefly for not staying in his hospital bed. Fun times, huh? It's difficult because a lot of dad is still there and not lost to dementia. Trying to let him keep some dignity and talking him through all this is exhausting. He always was hard-headed and difficult, because he's emotionally stunted an dense. So all this is the icing on the awful cake. As a high empath, I can literally feel how terrifying this loss of control is for him. I feel for him as I would for any family member whose freedom is pretty much gone. And of course I feel for us for how difficult all this is. I honestly wouldn't mind if he had an adverse reaction to the Seroquel... It would put us all out of our misery at least!
Your father has a right to be upset! Stop expecting him to put up with it and get him out of there. The abuse and neglect in these places is off the charts.
The reason your dad is probably falling all the time is because of the drugs they have him on. Do not let them give him antidepressants or sleeping pills! Also, be careful with them giving him anesthesia since it makes dementia worse!
There are great options for in home care. We have one called IRIS which helps them stay in their home. Even family can help as care-givers (who are usually the best because they care more). They can help make accommodations to the home if needed and get him the therapy he needs as well. You can check into therapy that will come into the home. See also what his insurance will cover in this respect.
Please listen to your father.
I don't sense abuse so much as the standard neglect of nursing homes from inadequate staffing. And for that reason we both want to find him the best situation soon. How I wish I could speed up time and already know what I still need to find out, and have answers immediately. But it seems like reality is not cooperating with me and in regard. :-)
Many rehab facilities have geriatric psychiatrists who call in on a regular basis. Some have Nurse Practitioners with added credentials in behavioral health snd psych med management. Ask the facility if they have a resource you can tap.
Also remember always to rule out a UTI as a source of behavioral issues.
Best of luck.
I see on your profile that your father is 94. My mother lived to be 95 years old with Parkinson’s disease and dementia.
I totally understand your concerns and frustration regarding his care. Parkinson’s disease is a neurological disorder which affects each person individually. As you know, it’s progressive and doesn’t have a cure.
Meds help some but as they age the challenges become harder to manage.
My mother did benefit from home health and rehab. She did both in her 90’s and they offer specific exercises for Parkinson’s patients to help with strength and balance. Yes, the falls are terrifying for them and us.
You are doing the right thing by having around the clock care.
The home health and rehab occupational and physical therapists were extremely impressed by my mother’s hard work.
This may not be the case for your father. Not everyone can do these exercises. They are difficult and tiring so use your own judgement on his limitations. Do speak to his therapists to get a progress report, then decide if it is appropriate or helpful for him.
Please speak to his doctor to find out what other medications he may need. Mom took Sinemet, Ativan and Seroquel. After she entered an ‘end of life’ hospice facility she was also given morphine and they removed the Sinemet.
Best wishes to you and your family as you continue on during this difficult time.
One last note, Parkinson’s patients generally have lower blood pressure levels. When mom was younger she had high blood pressure and was on meds for it. After her Parkinson’s diagnosis, her blood pressure levels dropped far too low. We ended up in the ER. The doctor discontinued her blood pressure medication.
Monitoring medication is extremely important. Add meds that will help and take away or substitute others when needed.
At the meeting, ask questions. He has 20 days that Medicare will pay 100%. I told Moms Rehab that there was no money after the 20 days, they discharged her on the 18th day. I swore I would never put her in Rehab again. Rehab is not a prison. You can ask that he be discharged back to his AL. Then u can look for MC.
Your father's brain is broken. That's what dementia is, a fracture of the brain. Out goes the ability to reason from facts.
If he had a broken leg, you'd get an orthopedic consult, maybe surgery, cast, etc.
With a broken brain, you need a good geriatric psychiatrist who can evaluate what cocktail of meds will help him stay calm and non-delusional.
Safety comes first, happiness second in my book. Read Atul Gawande's On Being Mortal and decide what is MOST important to dad and you.