Care homes, can they deal with PSP

[mrmen]

We cared for my father for a year and finally couldn’t give him the 24/7 care he needed, oh sorry he is 70 and we believe he is in the stage 2/3 with constant falls, wheelchair bound, just started having accidents in his bed, very down and has started smashing things up in the care home and says he wants to end his life.. I feel terrible for putting him in there and every time I visit he says it is horrible and just wants to come home. He has only been in there for 6 weeks now and 4 during lockdown which has been tough on all of us. My brother was the designate visitor during that time, I managed to see him on Sunday and it was very upsetting he seemed like he had aged 10 years, kind of stared pass me and didn’t really have any concentration. He was slumped in his wheel chair and kept bumping around into things and even though I tried to have a conversation and tell him what has been going on he had no interest. I left there very unhappy and thought terrible of myself for putting him in there. I really don’t feel confident that even though they said they were happy with him and can deal with him they can’t. Any way today we had an email wanting us to go in for a urgent family meeting about the damage he is causing and his Heath. Not sure what the outcome will be but just wanted to know if anyone else has been through similar and tried the care home path?

Thanks is in advance for any help.

Regards

Janes

[Goroos]

Hello JanesI know exactly how you are feeling regarding your dad being in a nursing home.

We placed my mum in one nearly two years ago.

My Dad could not cope and mum needed the type of help that I was not trained in doing.

Our problem is that the home has little knowledge on PSP. We the family have read everything possible but they treat us like we don’t know anything. Very frustrating for mum and her family.

Everyday as I walk out of the home I have tremendous guilt that I have let mum and dad down. This disease is unpredictable and you don’t know what is going to happen next.

When you have the meeting stand strong as you are your dad voice. Ask the nursing home to come to you with solutions not the problems. Your dad deserves good care from the nursing home. Take care and good luck

[racinlady]

I'm sorry to hear about your problems with the care home you chose for your father. I can't imagine how hard it must be for you and your father when you can't visit regularly.

I was able to find a wonderful residential care home for my husband where I was able to come and go as often as I wanted to. There were never more than six patients at any time. They cared for him for almost two years along with help from hospice. There were things that I didn't feel they did as well as I did, but there were other things that I felt they were better at. I felt like the owner treated the patients like they were family.

As far as your father's apathy, that is very common with PSP and is very hard for family to deal with. You want to do things that they will enjoy and they show no interest in anything you try. It was very hard for me to deal with too. If your father has a power wheelchair, it may be time to get rid of that. As PSP progresses it gets very difficult for the patient to operate anything mechanical partly because their reaction time gets so poor. My husband was never able to operate an electric chair. I think the extreme aging is pretty common too. I felt like my husband aged about 20 years in 4 years. Also the staring and slumping in the chair that you describe is very common with PSP. I doubt it is because of the care he is receiving.

I believe home care is best if you can do it, but you have to have enough help. No one can care for someone 24/7 by themself. I was never able to find enough help where we lived so I felt like I had no choice. I know how hard it is and the feeling like you have failed, but you can only do so much. We can only do what we can do. Maybe you can work with the home to fix things that your father is unhappy about. It sounds like a family meeting with the home could be helpful. It sounds like your father is still able to vocalize his concerns so that is a help. I hope all goes well with your meeting with the home.

Take care,

Pat

[ConcernedEx]

Sounds ever so heartbreaking for your dad and you. What a difficult position to be in. Prayers that God will lay a more comfortable path before you soon. No one wants to put a loved one in a home- my heart breaks for your family- psp is so horrific.

[NanBabs]

If the care home is not a Nursing home, then you may need to look at finding a good one with experience of PSP or one which can handle the condition.

The guilt doesn`t go away even when you know it is the right thing for the patient. I was able to visit my late husband every day (what a luxury that seems in these Covid times), so I kept a close eye on his needs and how they were being met (or otherwise !)

It sounds like your father is understandably depressed and his GP can prescribe something to help with that. Apathy is also part of PSP so staring past you etc is something we found difficult , especially when we visited on Christmas morning and got no response. The agitated phase does pass and he won`t be able to move around and thus hurt himself. PSP is such a cruel disease every change will bring new challenges.

Very best wishes to you all.

[kenh1]

I cared for my wife at home,only putting her in a nursing home to enable me to have a respite break. But on three occasions she picked up an infection and ended up in hospital. So instead I used a local care company who provided a live in carer who took over from me and gave my wife and the house the love and care they both needed.