My husband was in the hospital for 2 weeks for a reason not really connected with his dementia. Then he was in rehab for 3 weeks. It was a terrible situation for both of us. He really "went crazy" doing lovely things like running down the halls naked, throwing feces, entering other people's rooms and scaring them. While in the hospital he was in restraints, but in rehab they had no control over him, and thoroughly enjoyed telling me how difficult he had been. I was advised to put him in long term care, but I knew he would be acting the same way. I brought him home, and he does not go crazy like that, but he still needs continual care from me. I healed a bit during his 5 week stay elsewhere, but now I am being burnt out again. If I put him in long term care or memory care it will be like throwing him in his own personal hell, but I don't think I am up to keeping him at home forever. I feel like I am in prison. Has anyone experienced LO acting in this manner.
I am so sorry. This must be heartbreaking to witness and devastating to your own health. If something happens to you then what will be the outcome for your husband? Many on Forum have tried as hard as they could, and have had to face the inevitability that placement is the only answer. I hope they will answer you. And again, I am so sorry.
"The person is there in the flesh, but what he/she was is gone"
So yes, I have had experience with both of my parents going to the hospital and then rehab & suffering from hospital delirium. It's a temporary thing caused by the illness itself, and then the strange environment they're in during the recovery period. As you said yourself, your DH is no longer running down hallways naked or throwing feces, so he's recovered from the delirium he was suffering during his illness and subsequent rehab.
Before the days of the plague, I worked as a receptionist at a Memory Care ALF in town. There were plenty of wives who had no other choice but to place their husband's in our care. They'd come frequently to visit them and spend some time together, or take them out for lunch/dinner or for ice cream (if the DH was in good enough condition to do so.) Then the wife got to go home and sleep well through the night w/o worrying her DH was going to sneak outside at 3 am and kill himself in the road, or something similar. He was well cared for and SHE was able to care for HERSELF at the same time. A win-win situation, in reality.
Try to banish the stigma that's been attached to managed care homes and release yourself from that nonsense. Dementia is a horrible disease and one that is VERY difficult to manage at home. If you can't do it, you can't do it and there is no shame in admitting it. This is why Memory Care ALFs are popping up like flowers on every other street corner in the USA.
You will get people here on this site telling you horror stories about how awful 'nursing homes' are without even having firsthand experience with them; they just copy/paste ditties all over the site. I have a soon-to-be 95 y/o mother with advanced dementia living in Memory Care since June 2019, and in regular AL since 2014 and I can tell you FIRST HAND that she gets excellent care there.
Whatever you decide to do, wishing you the best of luck with a difficult situation.
In the hospitals settings I also did not feel they were equipped to handle it. I have now treated if possible any UTI or infection at home with home health and an on some dr service. My mom still has a feeding tube (for extra fluids only) and we just had to swap it out a few weeks ago and she has lower level delirium - just from that stay (no new meds no UTI ) it just was from the environment.
I agree with all who will say this is the hardest thing you will take on - if you want him at home I want you to surround yourself with a team of people - as you will need them - so please realize you will have to get in home help. How long have you now been home and what needs have increased since before his stay?
Maybe you could reach out to your family doctor and request a social worker - one can come to your home - give you guidance on any local resources and choices - just so you start to gather the information as a step one for yourself.
I also have my mom at home with me - it is grueling but I also have seen the other side of what exists out there and in my area - it is not something I can Unsee - I also understand why and when some have to choose it.
What really is the Gods honest truth is that all choices s&ck - it is horrific on those we love and on us - but I also hear you and I hear the exhaustion - so I know you are drowning and my suggestion would be to speak with his doctor - (again - I’m not sure what level care your husband is at to be able to suggest other options or what may bring you rest -relief and help but you are here because you know you need it ) meet with a social worker and start at least the baby steps of what you need to make this new normal feel a little less out of control. Let’s get you on a better road for both you and him 🙏🏼🦋
You say your husband is better anxiety and out of control wise but need more help with everything else? Home health you can receive nursing if needed - along with speech - OT and PT - after moms encephalopathy I started with speech - it took a few weeks but the speech therapist just helped her get back a lot of her cognitive things that were delayed due to the delirium/encephalopathy - once she was stronger there I then added in the PT and OT (they can even work together) to address any weakening or get him stronger in his daily ADLs - assess the home for things that could make it easier for him etc? And home health can also request a social worker who can give you additional resources. If he is a veteran - he could qualify for services and cost towards cna help etc. but there are many local resources that some areas have that can also help him get into an adult daycare couple times a week or he could qualify for other stuff that may help you both.