Struggling with visits and what’s to come..

[NoSnowNoGlow]

My Dad is 83 with dementia. He’s been living in a care home for just over two years now. I feel so sad every time I visit. Our adult DD finds it hard to go seeing his decline so I go with my mum (82) and my husband. All he can do is sit in a wheelchair and sleep, all conversation has now gone. He can’t eat on his own but the staff are so very good with him.
If he did suddenly stop eating and drinking, what happens then? Would he need to go into hospital (which I’d prefer him not too).

Hi, it's such a cruel disease. No he doesn't need to go to hospital. I work as a nurse in a nursing home and have had many a conversation with families over the years as part of advanced care planning. One of which is around hospital admission. The first thing i would do would be to check he has a dnacpr, then talk to the home and say that you don't want him transferred to hospital. The only reason this is ever over ridden is for a fracture or quick sutures ect.

Very interested to hear the replies. But as far as I am aware you are basically in this place until his health declines or - as you say - he stops eating / drinking. My MIL is in a similar situation (86, Parkinson’s and dementia, completely immobile and unable to speak) and has been in the home for 4.5 years. She is well cared for, and not distressed, which is a blessing.

You can talk to the home / dr about various options such as DNR, not giving antibiotics etc but until there is a clear signal that the person is actively dying, they will be kept alive. MIL could live on in this way for a long time to come.

i think each person has to decide how they respond best. How often do you visit? Can your mum go without you? Is the home close?

We only see MIL rarely as we live overseas. FIL visited daily for years, but has recently stopped, for various reasons. For him it was a social thing as he didn’t like living alone, it gave him a structure to his day and he had a chat with the staff. SIL visits 2-3 times a week: driven by guilt and anxiety. I don’t think they have ever spoken to the home about DNR etc. For me that would be part of dealing with it.

Important to talk to the home and ideally your dad's GP about avoiding hospital admission, maybe completing a Respect form if they have them in your area. Tbh I was assured by one very good GP that even a broken hip can be managed in the community if really necessary but usually surgery is part of the pain relief for that.

You’ve been given the best of advice. All I would add is once you have things formally on his notes, have the same conversation occasionally with the team who see him day to day as well. Let them know your thoughts. If they hear you gently say what you’d like for him, then, when the time comes it becomes just a natural continuation

There’s a thing called PEG feeding - putting a tube through the skin directly into the stomach. You may want to read up n it in case it’s suggested, and other people here will have had experience of it.

I agree with @MereDintofPandiculation that it's good to be prewarned about tube feeding, both the short-term type via the nose (NG feeding) and the longer-term sort that requires an operation (PEG feeding). There's evidence that in dementia, PEG feeding doesn't prolong life, increases the risk of chest infections and can make quality of life worse. NG feeding in this country is almost always only done in hospitals (this would certainly be the case for someone with dementia). It might be suggested if the cause of his not eating was supposed to be an infection or other reversible cause. However, it has risks of its own, especially for confused patients, and you'd have to consider what the team would be achieving by using it.

Btw MILs home recently told us that they were putting ‘Hospital at Home’ in place for her. As far as I understand it’s a commitment that the person will stay at the home and be treated there as much as possible. I’m not sure what the motivation is - freeing up hospital beds, choosing a more appropriate treatment for someone in her situation, or what?

You should be pleased they’re putting in place “hospital at home” - dementia patients are so much better off somewhere they know. When my DSis’s MIL with dementia had to go to hospital from a home (she had fallen so they were worried about a fracture) she really went downhill, and they also lost her false teeth. My DSis was horrified by the number of lost false teeth and hearing aids - so better to keep them out of hospital if at all possible.