No idea what to do for the best

[nabanna]

DM (94) blind and now mostly deaf as well was bumbling along ok with carers in full-time 9-5 as I work outside the house. She has been having regular UTIs (and regular antibiotics) over the last 3-4 months, but started to get worse at the start of last week - delerium and not eating or drinking.
She was admitted on Christmas Eve as her blood sugars low and off her legs . It's now day 6 and she is up and down, although moving her to a different hospital yesterday without telling us so we could settle and reassure probably didn't help.

We have been to see her and help her to eat and drink twice a day since she was admitted and sometimes she is out of it and at other times I knows it's us and will respond to eat for us.

I think we would all say that hospital isn't the best place for her, but do we try to bring her home with perhaps 24 hour live in care which would disrupt our lives (DH and me both late 50's with no kids) or look for a Nursing Home

I don't know what to do for the best both for her and for us as I have lived in the house with her and before he died my dad for 8 years.

Those who have been there should we look for a Nursing home where they can get nutrition into her or look to move the house around and bring her home?

Will she able to self fund if she went into a care home? It sounds as if you. mum and DH live in the same house - who owns it ?

Nursing home. They will have expertise you don't

Live in care can be a real headache - carers of variable quality and sometimes difficult personality, problems occurring during their time off each day (late OH always needed commode as soon as they walked out of the door!), regular changes of carer requiring selecting a new one and a whole repeat of the settling in ............

I think either way is quite likely to result in a significant decline - just don’t feel you e made the wrong decision either way. It would be quite reasonable to choose a nursing home near to you. Has she ever expressed a view?

She’s 94. Today is likely to be the best she will ever be. Her eating and drinking may be naturally tailing off. She no doubt needs 24/7 care and supervision so would look for care home as that’s not a responsibility or disruption I’d ask of my adult children.

Each move is likely to cause a deterioration in her cognition, and it sounds likely she will need a care home soon even if not immediately. I'd therefore go directly to that if possible rather than moving twice.

Agree with PPs. Full time care at home is hugely disruptive, if your mum loses more mobility it will become even more so as she may need care during the night. We found that there is no guarantee that you can even find carers to cover all the shifts, even if you are self funding

Thanks all for your thoughts , really helpful.
Mum owns her own home in SE London so yes self funding, although I have paid majority of her care fees to date so am owed a significant amount (probably around £150k in total over the past 4 years) that I will need to negotiate with my sister about getting back at some point soon

Mum has always refused to go into a care home and fully admitted that it was selfish of her as we couldn't leave her in the house alone ever over the past 5 years , so have been totally tied to looking after her when not at work

I think it is difficult to reconcile that she is unlikely to be any better than she is today with how she was just 2 weeks ago , and I am scared of making any decision as that could cause a more rapid decline rather than any improvement, but on the other side she isn't showing any sign of improvement whilst in hospital anyway.

Every change in care arrangements at this age and stage tends to cause a further decline, but to be honest I do not think that should stop you making the necessary changes. She needs efficient care and that is the route you need to follow, even at the risk of further decline. There really is no choice.

Definitely needs a care home. I always thought that people who refuse care homes are being very selfish towards their family. You can’t do this on your own. She’s going to need 24 hour care and it will take too long to set up the support she will need.

Firstly, hats off to you for caring for both your mum and dad, in your home, for so long.

Something I see often here is that the cared for person refuses to accept residential care, and demands the care only be provided by family.

That's all well and good, but there comes a point where the people providing the care need to set their own boundaries in order to preserve their own health and wellbeing.

That will look different for everyone but it's absolutely OK, valid and often necessary to say, "I hear that that's not what you want. However I am no longer able to continue to look after you. "

I suppose what I'm trying to say (badly) is that sometimes it's no longer a matter of what the cared for person wants or not. It's what is safe, healthy and possible for all of those in that caring relationship that needs to happen

There are some really lovely care homes out there. Do your research, visit them and ask for a tour, then pick the one you think would best suit your Mum. Some of them look like hotels these days - my Uncle is in one and he’s settled really well. Often it’s fear of the unknown. Don’t let the local authority make the decision for you; be proactive now

You can’t provide 24 hour care and your mum needs specialist care. She will be better off in a care home. My FIL was in a wonderful home for the last couple of years of his life - a really caring atmosphere and he got excellent nursing and medical attention.

DH and DSIL cared for MIL at home with carers for two and a half years when she was a similar age. She had to go into a home eventually (family illness reduced amount of support available at home) and died a couple of months later. The home was great, lots of activities, smelt good, looked good, nice garden etc. it made a difference having been able to choose somewhere family liked rather than just what was available (we had been lining up a couple of weeks of respite care)

Would we make the same decision again? (Home with more carers inc overnight v residential care) Yes, her children were exhausted and we knew she was safe and cared for without having to take all the mental strain of making sure everyone was where they should be.

It's so hard balancing everyone's ideal solution and actual needs. Hope you find a solution you are content with.

I wonder whether you could find a good care home for ‘respite’ - better for her than hospital, but the right level of 24/7 care for her current condition. Sell it to her as ‘a nice convalescent hospital where you can have a good rest’ if you need to.

If after a month or so her condition has stabilised to a ‘new normal’, you can then make choices - at home with 24/7 live in carers / at home with full time daytime care / in that care home / in a different care home - based on that condition, and can make those choices under less time pressure than you would after a hospital discharge.

She needs the expert, round-the-clock care of a good nursing home. They can monitor and support her nutrition properly, give her the physical care she needs and she will have company.
When you stop being her carer, you reclaim your mother/daughter relationship and visit her often. It could give you both a lovely last chapter to her story.

I would absolutely bring her home

I had carers in our house 24hrs a day for the last 6 months of my dad's life and he thrived. I removed him from a fully funded care home to do this.

My dad passed this autumn. I miss the carers far more than i thought I would. At least 4 or 5 have stayed in touch and I giveth, having lived both sides of this, would have no hesitation in recommending the carers. Happy to recommend the national agency i used, (franchised though) and wouldn't hesitate to do it again.

And i am the world's biggest introvert. Totally happy to chat via pm on the details of our set up

My MIL went downhill like this. She was in and out of hospital and then she was sent to an assessment ward, which was actually part of a nursing home.

This was a good move for her, as the staff were able to fully observe how her health was and how she was managing.

Can you suggest this for your DM?

Yes, approach it as a 'for the time being' solution and deal with the longer term question (as much as anything is long term when you're 94) later. It's really tough to take on care at home and you've already done this. Time to find a setting where there will be 24 hour care.

That would o my work if you have the space and are comfortable with lots of people in your home. I personally would hate it.

As a PP said, my Uncle initially went into the care home for four weeks ‘respite’ as he couldn’t look after himself at home. He settled very easily, so it was then an easy conversation to then make it a permanent arrangement.
The care home said that this is the approach they take with quite a few new residents - respite to permanent

Thanks all, I think a care home is the next step , as suggested sell it as a stop gap and see how she settles.
With her currently and she seems slightly better, although seems a tummy bug has hit the ward she is in, so another challenge

Will talk to my sister later on, she was talking about an enhanced care package , but as others have suggested that is risky in terms of being enough for her as she is is now.

You need to do what best meets her needs. This may mean that you go against her wishes to remain at home. Try and find a good care home that also has on site nursing. It is possible to move between the two.

With regard to funding, if you are going to continue to pay on her behalf, I would ensure that all invoices to date and in the future are lodged with her Will so that you can demonstrate a claim against her Estate. The better alternative is to sell her house, reclaim what you are owed and use the balance to fund her care.