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.
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.
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))
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.
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!!!
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.
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.
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.
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.
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!
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!
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.
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.
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.
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.