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My 70 year old husband with Parkinson’s and dementia, although mild, went to a snf following a hospital stay where he had been admitted for orthostatic hypertension or extremely low blood pressure. Since he had become extremely more difficult to handle at home with no help, this seems like the time to make nursing home a permanent placement. However since in the snf he seems to have recovered mentally and mobility wise as well as no incontinence. His bowel and urine accidents in the house were becoming an issue and he would remove his Depends and go on the floor. But this “miraculous “ change has me feeling guilty and confused. I know if he comes home he will go back to previous behaviors. And I know PD and dementia are progressive. Yet I can’t help feeling awful that he is so totally lucid when I visit him and he tells me he wasn’t ready for this yet.
He says how can I spend the rest of my life like this which is a total waste of living? What is going on? I had no help at home and he was difficult for me to deal with.

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I can see why this would make you confused. People with dementia can certainly have their ups and downs. Maybe with his BP under control after his hospital stay, that has helped him seem better. He is also getting 24/7 care, which can not be done by one person at home.

While this is hard, I would not bring him back home. With my luck, the day he came home would be the day he reverts back to his previous behaviors.
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How do you know he has no incontinence at all in the SNF? Because he's telling you so? You're not spending 24/7 with him at the SNF, so ask the STAFF how he's doing in that regard. My motto is fact check EVERYTHING that is said to you. Of course DH will be on his best behavior in an effort to get you to take him home! Furthermore, dementia behaviors do not present themselves in a tidy, even line all day long; they change ALL the time! They get worse in the late afternoon (Sundowning) and as the day goes into night. He can be fine while you're visiting and then awful once you leave. Again, fact check with the staff about all of this.

Dementia notwithstanding, when our loved ones want something, they can be quite manipulative in order to get it! I see it quite often with my mother who has advanced dementia and I read about it ALL THE TIME here on the forum. I watch her schmooze her caregivers to the nth degree then turn on me like an animal the moment they leave. Different behaviors for different people in SPITE of the dementia. It's possible b/c I see it first hand!

Leave your DH where he is. You can always change your mind later on, but for now, leave him be and see how things go. You are right in that dementia and PD do not get better, only worse. "Miraculous" changes don't often happen, let's face it. But manipulative behaviors DO often happen. Consult with his PCP also to get his feelings on how DH is doing and what's going on.

Best of luck.
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BurntCaregiver Dec 2021
You're absolutely right about different behaviors for different people, lealonnie. Even with dementia it happens all the time.
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While Parkinson's itself is progressive, the dementia associated with Parkinson's is not the same as Alzheimer's or other types of dementias (can be more episodic). However, I do think you should stand by the decision to have your husband in the SNF, especially since he seems to be doing better. Who knows why? Maybe his schedule there (meds, meals, etc.) works better than what he was having at home. Apathy and depression are both common in people Parkinson's, so possibly having more people around with whom to interact is stimulating. Hopefully you can enjoy each other's company more now that you are no longer his primary caregiver.
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I have never been in your situation, but you could consider a compromise for now: hire an in-home aid to do most of the undesirable/tiring tasks for his care, plus this person (if it's a guy) can also be a companion for your husband. This probably won't be a permanent solution but it's not a change that is so profound that it can't be undone. You will of course need the financial resources for it. Don't second guess yourself -- you're doing your best in a difficult situation. I wish you peace in your heart.
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He seems to be doing well with 24/7 care. That's great! Apparantly your house is not set up as a professionally run, staffed, nursing home. Just kidding about that. Given his positive response to the care he is recieving now, he should obviously stay there. You have done the best you can, and now this is the next stage of his journey and you can get some well earned rest.
Have a chat with the staff, bring a list of questions, and find out what else may be going on with him. As well as sharing what was happening when he was home. He also may want to present the best picture of himself in order not to "worry" you.
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He has professionals - more than 1 - available to meet his needs around the clock. So, he has somebody always available to take him to the toilet every 2 hours. This is sustainable for the snf workers since they don't have to do this every day for 24 hours, They get to go home to rest, relax, and do things other than care for your husband during their time off. You don't get those opportunities. Your result is feeling tired, never getting time to rest/relax/do things you enjoy... The workers can get a full 8 hours of sleep which I doubt you do.

Just realize that he has reached the point of needing round the clock care which is impossible for you to provide. He is doing better there. AMEN! Now, you can the rest you need and move onto the next stage of both your lives.
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I agree with many replies here, except the suggestion to try in-home care; imho that would be 'delaying the inevitable.' You've already reached your limit, and that is legitimate, honest, and reasonable, and Valid. Your dear husband is possibly playing on your confusion/guilt by rallying his internal resources to play 'I'll be a Good Boy and wife will Take Me Back.' That may sound harsh but I think it's a natural thing, almost how a 'naughty' child will promise to do better to get out of 'time out', lol, even if counterproductive for him, and for you. Praise his apparent improvements at the snf, taking it all with a grain of salt after you verify all his claims with the staff who actually attend to him 24/7. Then let him know you still love him, are his wife and can now be there for him as loving support (not his 'nurse maid, said silently to yourself!)
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I agree. Now is the time. He may have rallied with the round the clock care, but the disease is progressive and if you bring him home you may have trouble finding a place, or a place you like, if you need to place him suddenly. He sounds like he’s doing well with skilled nursing care, right where he is.
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I had the same situation with my dad. 24/7 care improved his overall health and then he wasn't willing to stay in the facility.

He was able to actually move himself to another state but, the decline was obvious.

Your husband needs a village, whether he agrees or not doesn't matter because the whole load is on you and you matter too!
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I would ask for a care meeting with the staff that does his care.

First...there is something called "showtiming" where they can seem normal for a period of time. I would ask staff how he is late afternoon and into the evening. Does he Sundown.

Second...many have said that a LO does everything required when in Rehab and when they get home they go back to not wanting to do anything. So, he may be doing better in a structured environment.

Low blood pressure does cause lethargy. Mom could not even get up off her couch.
Ask the staff in the meeting why he seems to have done a 180. Is he still considered 24/7 care. And if not, what does that mean if u brought him home. If u choose to bring him home, it will be hard getting him back in if u find out its not working.
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A
answry Dec 2021
"It will be hard getting him back in if u find out it's not working."

JoAnn29, can you explain why you say this? Is it because her husband may refuse to go back or is it some rule of private insurance, Medicaid, Medicare, or nursing homes? Just curious!
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It's not a reflection on you, but keep in mind he's in SKILLED nursing. In other words, those caring for him have been trained how to handle people with his issues. I'm guessing you weren't trained.

Also, keep in mind that he has round-the-clock care by a team of caregivers -- another thing you have not been able to provide. He's also likely a bit of a rule follower and is behaving better for the caregivers there than he would for you. He knows he can push the limits a bit farther with you, but what limits are in the SNF are still a bit of a mystery.

It's not an enormous surprise that he's doing better there in the SNF, and it's unlikely he'll do better than that if he returns home. If he stays there, you'll be freed up to just love on him while moving on in a healthier manner for your own life. You aren't obligated to be there visiting with him during all his waking hours, so take some time for your own interests.
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My prayers are with you. What a difficult time with so many difficult decisions. I took care of my hubby till 3 days before he died. It was so difficult and I don't I don't know how I did it. I was in PJ's 3 and 4 days straight, recovering from a hip replacement and 5 fractures that were healing. I had a live in son who was the best! I held on to my husband and due to his sugar, he was in and out 911. I was 75 and had difficulty walking. I really don't know how I did it! , When at times fell asleep, I awoke and quickly felt his skin and pulse. It was like a bad dream but as a retired nurse, knew the care, meds etc. However, now I'm 83 and scared to death. I wonder will this be me? They say I'm sharp minded, but this could be me. Some friends have dementia and I want to help them, however, I now have a total of 8 fractures on 1 side and walk with the walker. These people really have their hands full and I admire their strength and courage. It is so difficult! I will always remember the care givers in my Prayers.
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M
Momheal1 Dec 2021
God bless you. I know that I was 47 when mom had her stroke - now 50 and every day think “how am I still standing” - I think most of it is survival and no other choice - you just “do it”. You are a warrior and though I know it doesn’t and didn’t feel like that - just know that I know you are! I wish you quick healing and some days ahead that are about you 🦋
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You are 1 person.
In a SNF there are many people to provide care around the clock.
And the shifts change so it is not the same person 24/7

You placed him because it was getting more difficult for you to care for him. If you had hired a half a dozen people to help you and be there for both of you around the clock I am sure you would have been able to keep him home. But that is not a viable option for most people.
I was able to keep my Husband home because he was compliant and due to a hip fracture his mobility was limited. But I always said that I would have to place him if at any time it became unsafe for HIM for me to care for him at home OR if it became unsafe for ME to care for him at home. Luckily that never became an issue. And another reason it was not an issue is the house I bought when it became obvious that the old 2 story house was not going to work was built Handicap accessible so I had the wide halls, roll in shower, no carpet and ramps where needed.
Don't second guess your decision.
You can now switch your focus and become an advocate and enjoy the time you spend with your husband when you visit, not having to worry about changing his Depends, moping the floor.
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Pamilton: Herein lies the simple answer to your inquiry - you are a solo individual whereas the SNF is staffed by MANY individuals.
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A lot of elderly, early in dementia or with just age-related decline, enter into what I call the Senior Brat stage with people they feel comfortable with, people they think won't set boundaries. And lots of times how they get there is just good-ol cognitive behavioral, same as you or me.

Part of this is moderating behavior so as tp get what they want. Either way. Expect a lot of "I GONNA DIE" said in that stage. Or like everything is equally emergent.

In August, we had a situation where we were trying to get the FIL and us over for a covid booster, in the one county that offered it, for the one day they offered it out of county. We'd all gotten J&J, and now you can see how it's emergent. Well there was NO WHEELCHAIR there because it was in THEIR CAR that SIL had just taken to deliver MIL her lunch at a hospital. I'm sorry, but in hospitals they feed people, ok? And when fat a** finally came back with it, we had to hear the iPhone convos about how boo hoo her lunch was mislabeled, she never got it.

That's what I mean by senior brats. They get bratty. The only thing to do about it is set boundaries early.
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If he is doing much better in a facility, count your blessings and do what you can each day to feel okay with your decision. I also wonder if you are struggling to be away from your husband. I sit and wonder what I will do once dad is no longer under my care. That was extra responsibility that I will no longer have and will have to adjust and just breathe.

However, if you do decide to take that step of bringing him home. Be sure to check on the question that I presented to JoAnn.

[Jo-Ann "It will be hard getting him back in if u find out it's not working."]

JoAnn29, can you explain why you say this? Is it because her husband may refuse to go back (what I'm finding with dad) or is it some rule of private insurance, Medicaid, Medicare, or nursing homes?

Wishing you both well!!!
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Don't bring him home. You've already experienced what he was like at home. That will not change, in fact it will get worse with time.
The responses here are totally spot on. Even with dementia people can manipulate to get what they want. They can be nice as pie all day long with some people. Then the second they're around a spouse or one of their adult kids they turn into a wild animal or a complete incoherent invalid who craps on the floor from the dementia.
Also remember that your husband is a different person in the nursing home because the nursing home is a completely different environment than home. He has no one to antagonize at the nursing home. The staff doesn't care if he wants to be ornery or wants someone to fight with. They won't engage. They do their work and move on.
He won't take his diaper off and crap on the floor of the nursing home because he doesn't know if he'll get the reaction and response he wants. He already knows your response though.
Don't take him home. I cannot even stress this enough. You will be so sorry if you let him come home.
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K
KPWCSC Dec 2021
BurntCaregiver You state in your profile “I understand where every single person here is coming from and what they're going through.” You obviously do not understand Parkinson’s (and probably a lot of other issues). It is very possible for a PD patient to change for the better simply with an adjustment in medication, therapies, etc. PD is a progressive disease that often requires new approaches over time. The medicine routine is referred to as a “cocktail” because it often requires more than one PD med in the routine that is adjusted specifically for each patient. No one can know if he will revert to his old ways unless he returns to his home so maybe a trial visit is possible. If I had of taken your advice 25 years ago when my husband’s PD seemed unmanageable he would either not be alive or in a nursing home all that time! Fortunately we were sent for a second opinion and a simple change in his medicine brought him back almost to his previous level. I’m not saying this will happen in their case, I’m just saying PD is unlike any other brain disease which is described this way…. When you see one person with PD you have seen one person with PD… meaning no two patients are exactly alike! I understand that one day adjustments will not make a difference in my husband’s condition…. but until then I choose to keep fighting for him seeking out the next therapy that is best for him. I hope “Pamilton” can weigh all the pros and cons as she considers each response here and ignore simple negativity.
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My first question after reading your introduction was to ask....Do you visit every day and does he know if you don't visit each day? If he doesn't notice when you don't visit, I think you should make yourself a schedule to only visit every-other day or so. You've been a good and faithful care-giver, but if he doesn't know whether or not you've visited every day, you should take at least a couple of days a week to have some semblence of a life of your own. I know that sounds cruel, but I've been where you are and, after a couple of years of living that life, I realized he didn't remember which days I'd been there and that my visits usually meant that he would be restless and harder on the staff after I left. So I cut it back to Mon. Wed. & Fri. and resumed some semblence of a life of my own. It worked well for all of us.
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I think that this is the new norm for you and him and it's always hard to make changes. Esp b/c you know he is not coming back home, and the reality of aging has set in.

Also--70 is VERY young for all these health issues. My DH turns 70 in 2 weeks and he is still working FT and golfing and driving me crazy. You probably thought you still had years ahead of you when he would be living with you and you'd be caring for him---and that didn't happen. Life is nothing, if not unfair.

He has more hands on care than you could possibly provide him at home. Don't beat yourself up for being human. I have had to care for DH after several enormous life changing situations--and after he was 'better'. I always crashed and burned, big time. I know that it's very likely one day that I will have to have in home care for him or place him in an ALF. We've planned for it, financially, and hopefully it won't happen, but better to plan and be prepared than to be blindsided by an unplanned health issue.

Also, since you're not the primary CG anymore, you see him in a different light. Not that you didn't put your whole heart into caring for him--it's just not possible to do it alone. Be grateful for the good care, and make a life for yourself.

So many people on this site are begging for answers to 'what do I do with dad?' and cannot navigate the waters of FT CG, whether in home or in a NH. You've already made that jump.

If he has a level of dementia, then you can cut your visitation down to a speed that's right for you. Not going everyday does not mean you don't love him. I know when daddy was at the end stages of Parkinson's and he didn't always know me--it was heartbreaking to sit with him. And a whole day? It was impossible, really.

Don't beat yourself up. Very few people can do FT CG and not suffer from burnout, pretty quickly. You can pick and choose how much you want to be involved. That's really a blessing for you.

((Hugs))
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Hypotension, by the way (hyper- means high). And if our brain wasn't getting any blood when we stood up we might pee on the floor too.

But guilty is the last thing you should feel. You are not guilty of giving him Parkinson's, which is notoriously difficult to treat and manage, just for starters.

You do not have to make any decisions today, or tomorrow; and even when you do feel ready to it does not have to be either 1. coming home only to lapse back to his former condition or 2. permanent incarceration at a level of care he doesn't need, with nothing in between.

There is a HECK of a lot to think about. What he wants, what you want, what was going wrong in the months running up to admission, what has been done about those factors, what are the prospects for further recovery or further improvements in management (or deterioration) in the short, medium, long-term term; and then, once you have a really good grip on the information, what services and facilities might offer the right, adaptable level of support that he needs?

Talk to everyone involved. Breathe. Ask a lot of questions. Meanwhile he is doing well and can safely stay put, and you have time to think.
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