Hospice/Nursing Home decision

LegacyUser

Hi all.
I'm hoping someone can advise me on the decision my family need to take for our father who is now in the advanced stage of dementia.
He has been at home up until now but we can no longer manage by ourselves for various reasons such as aggression, eating problems, sleeping disorder being seriously hard to manage, along with a lot of other issues, and we just need professional caregivers and access to doctor on a daily basis.
Dad is now in a temporary respite centre since since after Christmas. He got a chest infection about a week ago and he seems to be coming out of it but there are worrying signs that have made me think harder.
He is refusing a lot of fluids and eating less than ever and while this may go away when the infection clears, I know that there is a chance that this could be the beginning or a sign that he won't drink or eat properly on a more continual basis.

I don't know if this is related to the fact that he isn't at home anymore. He didn't ever strike on eating up until now and while he is a great place for medical care, it is depressing, well definitely more so than being at home with one on one attention.

He is due to move into a new nursing home with a dementia unit and it seems like an excellent facility. We've done our research and will continue to monitor things as they go there, but the move is planned.

I'm just wondering if a hospice environment might be more caring and more suitable for him. I don't have any experience of hospices nor do I directly know anyone who has ever used one and at the same time I don't want to pre empt our need for one, I just want to make the best decision possible and this has just occurred to me tonight.

Would really appreciate your thoughts and advice.

Boombastic

Maybe eating is the only thing he thinks he has control left over?

The only experience I have with a hospice was fantastic. The staff etc couldn't have been nicer or more caring. There is an air about the place though people are dying but the palliative care was amazing. A nursing home might be more of a stimulating environment.


Perhaps talk to your gp, or pop in to the hospice and check it out for yourself. It is difficult to be in the situtation

The_Conductor

Hospice care is excellent- but is not designed to be longer term care (nor is it set up for this). Your best bet is to gather as much information as possible as to what your options are- then sit down and evaluate it- once you see what some places offer versus the services elsewhere, it may be the case that a location you haven't considered may suddenly come out on top unexpectedly.

LegacyUser

My mum has advanced dementia at this stage so I know a bit about this. Getting her to eat became a really big problem for her a few years ago and she started going into hospital with chest infections. Our GP suggested PEG feeding as an option and that's the decision that was made. She's still alive, being fed through the stomach with a tube and she's in a nursing home. She was at home for a year or so before she went into the home. There are different schools of thought on PEG Feeding and whether it's right to fit dementia patients with them but that 's a whole other story. I can tell you that there are a number of residents in my mum's nursing home who have them fitted and they're still alive years later.

Hospice isn't an option for you so take that off the list. It's for people who are dying and there's a chronic shortage of beds in that sector. Your better option is to chat to your GP/Public Health Nurse and see what's available out there. As I mentioned earlier, my mum's in a nursing home and she couldn't be in a better place. She's looked after very well and the staff are wonderful. Not all homes are as good though so that'd be something you need to check.

sambuka41

As dementia progresses there are physical effects (which I am sure you have noticed), swallowing can be effected, which makes eating difficult. Also in the advanced stages people have difficulty with communicating and with connecting their symptoms, he may even have a sore throat, so its hurting to eat but he can't communicate or recognise that? Stopping eating can be a sign that he is feeling down as well.

Is the respite unit specific to dementia? Some places are better than others, and assisting someone with dementia to eat requires time and patience, some units allow this, others are short on staff time and staff rush because they have a litany of tasks to complete on shift sad but true.

If the nursing home is dementia specific this is something that they are aware of, and the staff should be trained to assist your dad as best they can. There should also be activities throughout the day to get him socially engaged and feel comfortable in the environment. Maybe have a word with his prospective home and mention the eating and ask how they will manage it?

tinner777

Grab that specialist dementia care bed with both hands, they should be used to dealing with all of the problems you noted.

No two patients are the same and the progression of the illness will be heartbreaking. Unfortunately there's no one here that can tell you what will be best for your dad even if the problems you spoke of are very similar to a lot of patients with the same condition.

The nursing home staff will have access to Hospice care when appropriate, and even if there's not a bed they are great with assessments and treatment plans.

Now as cold as this sounds, you and family need to get some rest and let the home look after him. Try not to get over concerned about the on going problems he his going to have, the staff in the nursing home will have myriad tricks and routines in order to get your dad to eat and drink but if he's no appetite he will not be eating. Peg feeds are great if the person involved can tolerate them, it's rarely that simple.

It may take a while for your dad to settle into his new home, it's extremely common, be guided by the staff.

If you have anymore general questions feel free to ask.

Look after yourself.

LegacyUser

Thank you so much for the kind words and advice.
I had the worst night last night so far and just wanted to gather advice about hospice care to be sure I've thought of all options.

We will go ahead with the dementia unit in the nursing home we have arranged now for him and hopefully the environment there will be more cheerful and that he will get the same level of medical care.

I will try to look after myself better. Visits are very hard, he's not able to communicate but I can tell he is more down than he has been but he has been doing his best to keep going, I know that too. It's just he took my hand between both of his hands and gave me a meaningful look of love and he closed his eyes then for a snooze- he was getting tired at that stage anyway, and I can't stop thinking about that either.