Late stage dementia - care at home?

[BillyoftheValley]

Is this really an option? Really interested to hear from anyone who has done this and whether they would do the same again...

My Mum is 10 years into an Alzheimer's diagnosis, still cared for in the family home. Dad is main carer (but limited in his ability to support), with around 30 hours of private support going in. I'm about half an hour away but with young kids / job, the usual.

Mum is doubly incontinent, mobility getting more limited and I'm guessing swallow function will be affected next. It feels the disease is now progressing more rapidly and we're moving towards a time when she will need 24/7 care.

My Dad is massively resistant to Mum moving into residential care. He's not in great health himself on several fronts and I have a gut feeling that he may not live much longer (although might be totally wrong!). I worry that forcing a move for my Mum into residential (if that's even possible) will damage our relationship irrevocably during what may be his last year or so of life. Which is what keeps bringing me back to care at home...

I'd love to hear from anyone who has done this: the good, the bad and the ugly...

Sorry for the essay and really appreciate any thoughts!

I am so sorry to read this. My Mum had Alzheimer’s for 11 years and lived alone. Just at the point that she could no longer cope in her lovely sheltered accommodation and a decision needed to be made I was diagnosed with breast cancer so ultimately there was no decision to be made. Mum went into a wonderful care home for her final 4 years and I can definitely say it was the right thing for us all. She was very well cared for, stimulated and happy and we saw the best of her. With lots of treatment I recovered and have some great memories of our last few years together. It may be that this is best for you and then your father can enjoy spending lots of time with your Mum but not have the strain of caring for her as such. Sending you a big hug.

So it sounds like you are feeling the strain of being the back-up / fill in carer… and worried about what happens next? And you can see the weak spots in the current care set up. But at the moment your mum is mostly okay being cared for at home and probably benefits from it in some ways.

Are you all being honest about your mums behaviour - her agression, outbursts etc? it must feel a bit uneasy waiting for something to happen.

We had a similar situation of FIL determined to keep MIL at home, seemingly oblivious to the reality of her condition. They didn’t have either the space or the money to make the arrangements that you have, so she was not taking her meds, got dehydrated, not properly cleaned, often in smelly, stained clothes. She ended up in hospital with delirium and went straight into nursing care from there. FIL still complains that he was ‘forced’ to give up ‘caring’ for her at home. Personally, I can’t believe now that we all indulged his feelings for so long, to the point that MIL ended up in hospital. But there you go, that was the crisis that (finally) provoked a much needed change.

with enough money / space / 24 hr carers / home adaptations , and as long as she doesn’t develop more serious medical needs, it’s possible to keep your mum at home for a long time. But if she becomes aggressive again, to the point that other people are unsafe, then it will break down.

Do you have POA? Who makes the financial decisions and who is paying for the care? In your OP you said ‘we’ but in your last post you said it’s just your parents? I’m asking because it’s unlikely that any local authority will pay for 24/7 care at home if a care home is cheaper, once the money runs out. Is your dad aware of the 18 month limit? Is he involved in the planning or is he leaving it to you?

And is he realistic about the situation? For us, MIL wasn’t actually the problem - it was FIL being in denial / ignorant of her condition and SILs trying not to upset anyone by making hard decisions that were the real obstacles to getting proper care in place.

I remember discussing this with carers and social workers for my mum, it was me and siblings looking after her, and carers. So nobody living with her. But they said that people often struggle on for much longer than they should. And also that doing that kind of care can affect relationships. My brothers found it super difficult when they had to do intimate care.

our mum was in a home for about 2 years, a specialist unit, she had round the clock care, they were kind. And we finally got some rest and didn’t have to worry about her being found wandering the streets or turning the gas on or an6 of the other mad things that happened.

Residential care in the right place isn’t giving up its moving* to the next stage. It’s a cruel horrible disease.

@BillyoftheValley It’s difficult to look at a the situation and decide how long it may go on for. It may be 18months, it may be years. My dad has been diagnosed with mild cognitive disorder; he still has his short term memory but is currently living in the 1960s. He started getting noticeably confused and paranoid in his early 90s. He’s recently celebrated his 101th birthday.

Whatever you arrange mustn’t have you as a back-up. Being back-up means no holidays, no sick leave, no glass of wine with your evening meal even on anniversaries, never being truly able to relax to an evening in front of the tv. And the same for your father. He needs to be able to go out, to develop his own social life to protect his own old age, to be able to respite. You could achieve all the with live in care. You could also achieve it with a care home.

on practicalities, these are adorable They meow, purr when you stroke them, and if you’re stroking them really nicely, they roll over for a tummy stroke.

I'm sorry you're in the thick of this too and yep, I def need a sanity check myself at times. Really appreciate you sharing your experience.

Can I ask how you manage in terms of the live in care? Is it delivered by a team through an agency (with the agency taking overall responsibility) or do you arrange directly with private carers?

I can't work out if I feel intimidated at the thought of essentially being in charge of such a vulnerable person's well-being or whether I prefer to maintain more active control over her care (as although not a professional, in some ways I still feel I'm the person who best understands her needs).

I've been surprised in that I find myself comforted when able to nurse Mum directly (I completely appreciate that this isn't everyone's experience). My struggle is that it's not practical (financial / young kids) for me to do so.

Thank you. And good luck to you too.

I swear to God if I'm ever in this situation I'd much rather enjoy some tasty food and run the risk. Might put that in my advance care plan!

I'm so glad you have those happy memories. Wishing you all the best.

@BillyoftheValley I do it through an agency and try to have as little to do with it as possible. There is one main live-in carer and then a cover carer for days off and holidays. Sometimes it goes wrong and then other people we don't know have to cover, which is unavoidable but still stressful when it happens.
It really really depends on the carer as to how well it works but having the agency means that I don't have to actually sack people if I don't like how they are with mum! And at least I know that they've been vetted so even if I don't think they're right for mum's situation, there's never been anything really in terms of 'safeguarding' that's been a problem.
I only visit once or twice a week now. It used to be a lot more but she's had carers for a long time and I've sort of backed off and stopped interfering! + now that she's not really cogniscent, I'm not as fussy about things like how they dress her or what they feed her because she doesn't know anyway.
It's taken me a long time - abt 5 years - to get to this stage of being so laissez-faire about it. The main stress now is her house falling down or the electrics going!
It's so hard to decide what's for the best. I think someone said upthread that there's never a right or wrong decision as such. You do your best!!

@MereDintofPandiculation , yes, you can never know for how long you will be taking this sort of care on. My Dm was already 89 when she moved to her (specialist dementia) care home. She came from a large and long-lived family, but even so, none of them had made it past 90.

She went on to just after her 97th birthday, and IMO this was largely down to the excellent care she received (in an Abbeyfield home).

I don’t mind admitting that I would never have had her to live with us. Not many years previously we’d had FiL (with dementia) living with us for around a year before he moved to a care home. TBH we had been blithely, utterly clueless about what dementia could mean in practice - absolutely no way was I doing it again. (And of course it was mostly me, dh always worked much longer hours and was frequently away for work, sometimes for weeks at a time.).

I would just add, there will always be the sanctimonious types, who oh so piously tell you they they would never put a parent in a care home! - and bang on about how ‘in other countries’ people look after their own, unlike us nasty selfish uncaring Brits.
Do please ignore them - they almost certainly don’t have a clue.

So it sounds like you are feeling the strain of being the back-up / fill in carer… and worried about what happens next? And you can see the weak spots in the current care set up. But at the moment your mum is mostly okay being cared for at home and probably benefits from it in some ways.

Yep, this is exactly where I'm at. The fact that I created this thread tells me it's too much on my mind and that I need to make some changes.

Are you all being honest about your mums behaviour - her agression, outbursts etc? it must feel a bit uneasy waiting for something to happen.

I suspect I've started to normalise abnormal behaviours and become a little to used to living with risks that 5 years ago I would have considered unacceptable... When Mum's aggression first kicked off, I chased and chased for help from the local hospital dementia service and Social Services. I was completely weirded out at what I considered to be their down-playing of the level of risk that I believed Mum posed both to herself and others. It made me doubt my own judgement. That said, with medication and the dementia progression I do feel that we've moved into a different place and that the level of risk has significantly reduced (although not entirely gone away).

On the finances: my parents pay for all care out of their shared savings. I and my Dad hold both LPAs jointly and severally. I expect we will burn through their personal funds over the next 18 months - 3 years depending on whether we go for full home or residential care. It's clear Mum would need to move to residential at the point they are no longer able to finance live-in care. The question currently churning in my head is whether we want to make an attempt to manage a period of live-in care for Mum while my Dad is around and she still derives some benefit.

Everyone's comments in this thread have been hugely helpful in getting me to ask the right questions of myself and the current set-up, and see how future options might pan out. Thank you!

Really appreciate all the info. Sounds like you've found your way to a relatively stable set-up. I realise that it's the lack of back-up care that is currently causing me the most stress. We need a more comprehensive package!
Wishing you and family all the best.

There may be other options. A care home I visited had some mini apartments in the grounds for couples so they could stay together with 24 hour care available.