Dad going into respite - he's upset and I feel guilt

[CareHome]

Dad is 91 with advanced Parkinson's. Mum is 89 and cares for him at home, with carers coming twice a day (get him up, put him to bed). Dad is finding it increasingly hard to weight bear even with a frame, making going to the toilet a huge issue (doesn't get there on time). Dad spends a lot of time sleeping in his chair, occasionally watching TV. I struggle to even get him to the car for trips out - then it's a short drive if anything because he can't get out of the car.

Mum is struggling to cope and has cognitive issues herself (possible start of dementia). She asked about respite place for dad, and I've got a place this Monday in a local nursing home for him - their assessment says he needs to go on their dementia wing. As a family we've talked this through with dad, but he isn't happy about it. He accepts it as he knows it's a struggle for him, but today he had tears in his eyes when I talked about it with him.

I feel so awful for him, but mum really needs a break. She is a bowel cancer survivor (7 years past surgery) and this year had carpal tunnel surgery which didn't fix the numbness and pain.

I'm also aware that if he goes in he may not come back out again and I know he is scared. He's lived in his home for 63 years, it's such huge change for him - well all of us really.

How can we help him?

Does he have dementia? It's common in later Parkinsons, but if he doesn't have it and his needs are primarily physical it's likely to not be the right place.for him - noisy, disrupted, lack of social stimulation.

I'd query that with the home.

And reassure.your dad that it is only very short term - even if the eventual decsion is that he needs permanent care, it.needn't be this specific place if it doesn't suit him.

The assessor from the home thought yes (lewy bodies?). He sleeps a lot in his chair, will watch football and snooker, some films, but doesn’t really engage if you ask questions. We’ve always thought it was because of his hearing but he refuses to wear his hearing aids. He seems depressed, but there’s a little spark of my cheeky dad every now and then.

When I visited the home (twice), the dementia wing was quiet - I heard one resident call out but that was it. Some of the doors were open and the residents seemed content watching TV. There are two lounges for people to go to for entertainment (dominoes, painting, visits from entertainers etc), cinema room, therapy dogs etc. It’s more than what he gets at home so I’m not worried on that side of things.

I’ve said to dad it’s for 2 weeks and then we’ll review. I explained it’s like a hotel with own en-suite room, chef, and we can visit anytime.

I think you just need to be honest and acknowledge his feelings rather than sweep them under the caroet while continuing to mention the positives.

Depression is common in Parkinsons due to brain changes and in his situation I would feel depressed too. Has the GP prescribed antidepressants?

Try and look after yourself too. This is a difficult time but your boundaries will keep him and your Mum safe.

Agree with the pp. You can acknowledge how he feels about it, and agree with him. But it doesn't change what's going to happen. It's hard to accept but at 91 and with Parkinsons / lewy body dementia it's probably time for you all to start making the mental shift to accept that things are changing, that he can no longer do what he used to do and that your mum cannot either.

It’s heartbreaking but you just need to keep in mind it’s for the best. He might not find it as bad as he thinks when he gets there.

In practical terms, I’ve seen whiteboards where you can write things you want them to know that they might forget e.g. XX will visit on Tuesday at 10am. My Mum had a notebook she would write in.

Can you get, or borrow a wheelchair for short walks outside?

We have a wheelchair so we're taking that with us for just that purpose @LionWings .
I've created two packs - one for dad showing him photos from the home, the staff, events they have held, the therapy dogs, what an ensuite room looks like. I've also just created a pack for the carers at the home - photos of family, old photos of dad as a child, his mum, mum and dad's wedding photo, children and grandchildren, extended family, his hobbies and TV preferences. Hopefully they can use it as a way to engage in conversation and make him feel more settled.

I saw him and mum today. Helped mum pack his bag. I spoke to him today about how he felt and he pulled a face. I said it was OK to be worried as it's a change but we need to give it a go. He asked how long would he be there and I replied 2 weeks. He replied he thought it was 2 days.
The home have already explained that when we visit he'll probably ask to go home and that it's quite common. He had to place his mum in a nursing home (she never came out and died of a stroke 4months later) so I wonder if he's reflecting on that.
Tomorrow is going to be difficult. I can't help but get tearful when I think tonight is his last night in his home, in his bed, with mum close by (they don't share a room). 😢

How are your DPs doing now @CareHome?

How is he getting on op?

Thanks for asking @4forksache@BunnyRuddington - I updated here https://www.mumsnet.com/talk/elderly_parents/5376059-dad-now-in-nursing-home-but-struggling?utm_campaign=thread&utm_medium=app_share

I feel for you OP, my FIL is 85 and still doing well , no carers at all and on his own ( touch wood) but I know my H would struggle to see him in this situation as he’s always been a fun chap, a fantastic grandad and an intelligent guy who worked all over the world in a senior professional job - you can’t turn the clock back sadly so can only make the best of the situation ‘as it is’ - even if it’s less than ideal - it’s not fair on your mum either who may not be too well either to try and cope with this - I’m not a big fan of care homes but sometimes sadly they really are needed beyond a certain stage