Follow
Share

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.

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.
Helpful Answer (10)
Reply to lealonnie1
Report
BurntCaregiver Dec 11, 2021
You're absolutely right about different behaviors for different people, lealonnie. Even with dementia it happens all the time.
(2)
Report
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.
Helpful Answer (7)
Reply to Grandma1954
Report

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.
Helpful Answer (6)
Reply to againx100
Report

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.
Helpful Answer (6)
Reply to Taarna
Report

Pamilton: Herein lies the simple answer to your inquiry - you are a solo individual whereas the SNF is staffed by MANY individuals.
Helpful Answer (6)
Reply to Llamalover47
Report

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.
Helpful Answer (6)
Reply to BurntCaregiver
Report
KPWCSC Dec 12, 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.
(3)
Report
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.
Helpful Answer (5)
Reply to newbiewife
Report

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!)
Helpful Answer (5)
Reply to Santalynn
Report

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.
Helpful Answer (5)
Reply to MJ1929
Report

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.
Helpful Answer (4)
Reply to pc750000
Report
Momheal1 Dec 1, 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 🦋
(2)
Report
See All Answers
Ask a Question
Subscribe to
Our Newsletter