When they never wanted to go into a home…

[Frodocheerio]

All his life my DGF has said he never, ever wanted to end up in a home.

Tomorrow, almost out of nowhere I have to choose one quickly for a fast track hospital discharge (rapid decline/ end of life).

It’s the doctors’ decision as he does not have capacity (Alzheimer’s), and I fully agree as for many reasons there is no doubt he would not be safe at home. Still, as NoK and his LPA I feel so guilty and conflicted. Suppose it makes you think about your own agency and choices in old age as well, and how much any of it matters in the end.

Not sure why I started this thread but would appreciate any words of wisdom I suppose.

It’s so hard isn’t it.

But the main thing is that they are safe and cared for. And often this involves a level of care that is just not possible at home

I think if your grandfather knew what staying at home would mean with his current limitations he would be ok with the home option. Remember he said that when he was capable of looking after himself.

Sorry to hear that.

He probably didn't want to end up in hospital either if he really thought about it though.

Hospitals are horrible places to be, full of norovirus and c-diff and really unwell people. Bright lights and noises 24 hours a day, people in pain and distressed and their families worried. Thin not sound proof curtains offering only the barest of illusions of privacy and dignity.

Care homes get a bad rep but in my experience they tend to be pretty good at the end of life stuff. Usually a nice quiet room, you can bring in the things and people that are important, and visiting hours are rarely anywhere near as controlled as a hospital ward. If he is end of life CHC funded it will most likely be a nursing home with qualified nurses on site to manage pain and all other needs too.

Pick the one that meets your needs best as his family for visiting etc. A decent care home manager will be happy to discuss on the phone what their policies are etc around visiting and the CQC website can give you a flavour of if there are serious concerns or not.

Thanks for your replies, you are both very right and he’s been so unhappy in hospital - the care has been quite poor and only accelerated his decline - I’m desperate to get him anywhere there might be a more homey feel and some genuine empathy.

The discharge team said I’d have a feeling for the right place, and even over the phone today one stood out as what we will need.

And yes pp that old-school care home ‘rep’ is probably what he had in mind years ago when he was in good health.

I think many people's mental image of 'going into a home' is based on what homes were like for their parents' or grandparents' generation. My grandmother's cousin was terrified by the idea of residential care, because for her it meant the workhouse infirmary. That has fortunately faded from anyone's living memory these days, but many wtill have only seen the older style of 'park in an armchair and wait to die' home. Most places are better than than now, but unless you've had reason to visit one you wouldn't necessarily know that.

And people underestimate their needs and overestimate their abilities.

Often a short stint of respite care completely changes their minds.

So sorry for him and for your predicament. Can you try to bring as many of his "homely" possessions to his care home room as feasible? A favourite chair or pillows or whatever? Anything to make him feel in a space where he "belongs" rather than an institution. Ask the care home what things like this can be placed in his room.

I heard my MIL say many times, " I'll kill myself before I go into a home." The reality was she declined to the point where she couldn't use a toilet unaided and she wanted someone with her to help all day, having carers in 3 times a day wasn't enough and she decided we had to organise a residential home for her. It was a bit stressful as it was the Christmas period and she wanted it immediately. We managed to get it organised within a fortnight and she spent her last year living there comfortably.
None of us know how we will feel as our health, both physical and mental declines so what we say when healthy is not necessarily how we might feel when the times comes. I hope it all goes well making the arrangements you need to.

DF didn’t want to go into a home, but now he is there ( discharge from hospital was to a nursing facility only not allowed home) he seems to quite like it. He gets meals, goes on some of the activities and DH,DS and I are able to see him as visitors rather than trying to sort out a million and one things in their home with a one hour drive either way.
Sometimes he says that he never thought he would end up in a home, but it’s not a bad way to spend his last period. So I think for many it’s the thought of going into a care home rather than the actual reality that they struggle to handle.
Its hard, but in a way it’s good that it wasn’t your decision and you have no choice.

He has Alzheimer's so what 'home' is will already be fragmented for him.
When my grandmother wanted to leave care and go home she meant to her mother and childhood home. If she'd gone to her own home she'd have been completely bewildered by it.

In these situations it's common to go in 'just for respite or for some extra support while you recover'. And really they never ask to leave (or not to leave to reality). I'm sure he'll settle really well. Treat it more as a change of hospital for him - because at this stage that's really what it is.

We had this with my Nan, she had suffered a fall and wasn’t well enough/safe enough to return home. She received 2 weeks fully funded rehabilitation care at a 5* care home around 15 miles from us. It wasn’t ideal, and she was furious at us all for having to go. But you know what, it was the best thing for her. She received 3 meals a day, started to interact with other people outside her circle for the first time in years (albeit they would have the same conversations over and over), and she didn’t want to come home. I’m assuming this won’t be the case for your grandad, but don’t assume all care homes are horrible places. My Nan had the same thoughts and wishes as your grandad but he may think differently once he is there. Just make sure you go visit, help him settle, and perhaps bring some familiar things from home to make things a little more comfortable.

My mum had to go into a care home against her will, using POA - it broke my heart - but we just couldn’t provide the care needed.

The care was exemplary (self-funding) and she thought she was in a hotel.

Her last days (around 12 weeks) were made as full & comfortable as possible. We knew she was safe and cared for. We could be daughters again, not carers.

But it’s still heartbreaking. Hope all goes well, OP

Exactly this. Two people close to me eventually asked to go into a home when they became so poorly it was impossible for them to enjoy living in their own homes. Don't feel guilty, it's not you that's forcing this on him, it's his illness.

So hard @Frodocheerio but as his advocate, you have to do the right thing for him. If that's 24h care then so be it. All you can do is find the best fit for him, so he is as happy as he can be.
The other, possibly harder thing, is not to artificially prolong his life (bitter personal experience sadly)

Lots of people say they don’t want to go into a home but the reality is that if certain circumstances arise there is no viable alternative. As much as people don’t like to acknowledge that, I think statements about not going into a home need to be gently and lovingly challenged at the time to explain that if the person is unable to look after themselves or is a risk to themselves in their own home then there may be no alternative, but to reassure that the family will choose an appropriate place and advocate for them and visit them etc. in your situation that conversation hasn’t been had but the fact remains that the assumption that a home can always be avoided was incorrect and so you need to accept that you are acting in his best interests and do all you can to make him feel comfortable and supported.

My dad was lucky enough to be able to pay for a very nice but expensive care home when he became too frail and vulnerable to carry on living at home.

I know not everyone will have that choice especially if you are reliant on local authority choice of care home and the financing but in his case, he opted to go in permanently after just over a week of respite care. He had two very happy years there.

When it came to his health going down so badly, he had a respiratory infection, it was obvious that he was not going to carry on for much longer, he was 94. He was bedridden by this time, they refused to send him to hospital as they could make him comfortable and monitor him constantly. He was so well cared for right up to the end, he would never have got that kind of care and support if they'd shoved him out to hospital to die.

At the moment DM is in hospital recovering from a fall. We may well be in your position in a few weeks time. It does feel raw.

My DM has always been adamant that she doesn’t want to go into a home. Now she is getting to the point where it is inevitable. I am an 8 hour journey away. The only other family member is a 2 hour journey.

The care homes I have visited so far appear lovely and hotel-like. I can only see benefits for living there. I do not see the care home scenario that my own granny was in 30 years ago. In a way, it is not about the home anyway. She wants the life she had ten years ago. No one can give that back.

To the OP, all you can do is find the best setting and visit as regularly as you can. No one can do more.

I can only advise you about the experience I had with mil, she went into a private home for the last 18 months. She had a fall at home and was found semi conscious by the caregiver spent a week in hospital and obviously couldn’t go home again.

she was adamant she would not go into an old people’s home and couldn’t see why she couldn’t come home with us (even DH said that wasn’t happening though we did discuss it and try to see if it could but it would have been a disaster)

then one of the nurses was talking to her and she was reminiscing about going into a mother and baby clinic when she had her babies and the nurse said “ wow like the one you will be going to from here only with your own room - nice “ and that did it. She never got her head around the fact the she was staying there, kept asking about when she would be discharged but she was ok, we had her overnight to us a couple of times and she often came to dinner especially for the first year.

my advise - take one or two weeks at a time, and set his room up with some of his own things including photos of family and when he was young- the staff at her home commented that they like to see what the residents looked like young so they weren’t just old people to them. Try and choose one near you so you can pop in to visit and have him to you easily. You can (or we could with mil) have things delivered she had her magazines and we would order treats to be delivered to her - Amazon parcels etc.

Change the language maybe care facility? Respite care? I think “Care Home” scares people

I think when people say this, they absolutely mean it, but what they are really saying is "I'm never going to get so frail and vulnerable that I can't look after myself". Because denial about ageing seems to be part of our inbuilt will to survive.

Similarly, we had a relative who was very clear that when her time came, she wanted to go to Dignitas. Then when she got a terminal diagnosis, she had no interest at all in exploring the practicalities of that. Again, I think it's a way of saying - other people may get frail and dependent but I'm not going to.

And in the event it becomes necessary, most people will be far better off in a home than with a cobbled together package of care at home.

You are doing the right thing for your GF and he is lucky to have you in his corner.

OP, I assume your DF doesn’t know it’s end of life, and if he has Alzheimer’s, he’s probably very hazy about the passage of time anyway, so you could tell him he was just going there for a couple of weeks. Once he’s there, he’ll forget how long he’s been there anyway. I would second those who say bring in things from home, and photos of family members, and things like a radio if that’s what he likes to listen to. Just a few home comforts. I think when people consider care homes, they think of themselves as they are when they’re compos mentis and don’t need looking after. I really don’t like the idea of a care home any more than anyone else, but if I had Alzheimer’s I certainly wouldn’t want my DC to ruin their lives by trying to take care of me.

Yes the language and framing is very important.

DF was adamant about not going in a care home, but whatever the consultant said to him provoked a complete change of heart when we next saw him. He said he was looking forward to being cared for after working hard all his life and wasn’t it good he had enough money for us to pick a posh one for him.
Any time subsequently the topic has come it, it seems to have become his decision to make the move so as not to be a burden on us.

My mum said the same thing but with early dementia and shingles , she was quite happy to go into a home for temporary respite care , and then was perfectly happy to stay. We had taken as much of the load off her as we could - shopping, cooking, bills, etc- but she was finding even simple things like putting the rubbish out almost overwhelming and dreaded having to talk to people in case her mask slipped. She found it a total relief to have everyrhing done for her

it was quite a posh home though. We merrily spent our inheritance on it - worth every penny and I wish she’d gone there earlier

I think @Idlewilder expresses it beautifully. Yes they never wanted to go into a home, but equally they never wanted to have raging dementia and the incontinence, incapacity and dependence that goes with it. It's not the care home that is depressing so much as the need for it. In my mother's case, I do feel guilty that she could have continued for a while longer with a live-in carer at home but it was a question of when not if as we were reaching a point where she needed major renovations and probably an additional carer since she was waking at night.

Hers is an expensive one and the staff are lovely but I find it pretty grim. There's a lot of gaping mouthed television-watching and weird keening coming from the bedrooms. I can tell you they're not all solving murders on Thursdays. There aren't many activities and my mother barely leaves her room. And sometimes I get arsey with the manager about this but mostly I realise that she isn't interested in anything and I'm railing against her dementia rather than her care.

Oh this has opened the floodgates again, thank you so much for all your replies they are so useful. The first one I visited today was absolutely perfect, I burst out crying on the manager for twenty minutes because she was so kind and understanding after all this time dealing with such dreadful care at the hospital, and now I’m crying again over a toastie in M&S 😂.

@Valleyofthedollymixthat sounds like DPs care home as they are in the nursing wing. DM fits right in as she struggles to communicate or leave her room these days. I do feel sorry for DF though usually sat reading his Daily Telegraph whilst the others loll motionless allegedly watching the television. But he seems happy enough and even if DM wasn’t there he might still be on that wing due to his memory loss, insulin injections and increasing incontinence.

I try to avoid going in the evenings as Moaning Mary is emitting constant moans. It’s a blessing neither parent can really hear it.

Same as my grandmother - she asked to go back to her childhood home (in another country).

It's really hard, OP, but try not to feel too guilty. You're doing the right thing.