Late stage dementia - care at home?

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.

@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.

@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!!

@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 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.

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 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.

I'd absolutely agree that anything decided can be viewed as the wrong decision. I had district nurses having a massive go at me for not liquidising home made casseroles a week before mum died. Made me feel like shit. And I wasn't with her when she died. But life isn't like a Waltons episode.

There was also a lovely old chap who visited his wife every day at my DM’s (dementia) care home. He’d done his best at home, but told me that eventually the stress and strain of e.g. 3 wet beds every night meant that he collapsed completely with sheer exhaustion. Had to get his wife to bring him the phone to call 999 - and it took ages to get her to understand that.

When the emergency services arrived he couldn’t get to the door to open it, and he couldnt make his wife understand how to do it, so they had to force an entry.

Such a difficult thing to go through.
My mum is about there. She has live in care. She's in pads; hoisted bed to chair/back again; bedbathed; she can still take meds orally and feed herself most of the time. Other times she needs to be fed/has med patches. So the level of care needs is really high.
If you can afford it, it is do'able. A couple of things to bear in mind: the extra costs of running a house (at tropical temperatures!) on top of the care costs; and house maintenance issues, especially once carers are living in - breakages, blocked toilets, damp ingress from gutters, boiler breakdowns (always in mid winter!) etc...
On balance, I'm glad I kept mum at home as that's what she wanted when she still had any capacity. Now she doesn't even know who I am, it makes me look back and think I'm glad that in her last cogniscent years, she sort of got what she wanted (obviously she didn't want carers at all but life isn't perfect!!). But I must admit it's almost killed me at times. (I've been brought back to sanity by this board a coupe of times in the last few months)
Good luck with it all.

The key advice I’d give you is don’t take anything on you can’t do for the next 15 years without an hour off.

The big myth about eldercare is that it ends when the person does - absolutely yes, but that doesn’t mean they’re dead. That can take another decade, especially with Alzheimer’s.

Don’t be fooled into thinking as the disease worsens the person gets weaker - often the psych symptoms are staggeringly full on, with escapes, violence and ranting that lasts for hours.

It’s incredible how frail old people can instantly transform into lightning-quick assailants or bolters - no one knows why, but it’s very real if you’re dealing with it.

Caring for dementia patients is a hell of a lot harder than caring for terminal cancer and no one asks you to do that at home for year after year.

Alzheimer’s patients are incredibly difficult to look after in the phase before they’re mute, bedbound, motionless and incontinent- the final stage that can last seven years.

Eldercare is often bad for people - extreme caring, which is nearly every dementia case, is extremely damaging.

You’re untrained, inexperienced and busy - get the professionals in.

My mum has been 'late stage' for the past three years and is in a care home. It's completely the right decision for her (as she was becoming a danger to herself and wouldn't really let anyone help her) and my dad as it's given him his life back. She's had no concept of anything for the past few years, she didn't even know home was home when she was there so that made the decision easier.

I was going to say exactly this .

My Dad was my Mums carer, but in the end she went into a home. She wasn't in there long as she died shortly afterwards, but he really couldn't care for her after a certain point. Her health and functions declined quite rapidly in the end and would come in stages.

Mine stayed home til the end. Once she was unable to get up, or leave her bed it was actually a lot easier. She had private carers four times a day, last call at 10.00 at night and back at 7.00 am. Hospital bed, mouth care and the tv on quietly. It was expensive, but we had promised her she would never go into a home. District nurses came in every day as she had leg ulcers to dress. She died very peacefully.

My mum (also Alzheimers) is being cared for at home by live in carers, as she is self funded it's a good bit cheaper than care in a home. For me it has the added benefit that I know someone also has an eye on my dad because like you I have all the other children/pets gubbins going on a distance away.

We initially used Elder having a lovely lady do 3 weeks on then with an alternate for a week to give her a rest (although they only 'work' set hours in the home, normally having a couple of hours off mid afternoon and my dad is in charge overnight). Now we have the same lovely lady but on a private basis and she brought in someone she trusted as her alternate.

Not all carers are the same quality but at least your loved one is home and you can have oversight of their care and if you don't like someone then you have the choice not to ask them back into your home.

The fairly recent film The Great Escaper, starring Michael Caine and Glenda Jackson, shows a couple living in a care home together because she needs 24-hr care although he doesn't. (He 'escapes' to go to the D Day celebrations in France.)The film is based on events that really happened, which made me wonder if there might be somewhere in your area that could offer this kind of care.

Whatever you do will feel wrong; but you can only do the best you can in the circumstances in which you find yourself. I think it's important not to let yourself be overwhelmed, and not to over-commit at a cost to your young family.

Warm best wishes.

My grandfather was cared for at home until the end, where we had two live in carers, both needed their own rooms expected separate bathrooms, with family members covering the two hour daily breaks. Some where amazing, fantastic with both grandparents, others removed most of the valuable antiques, stole all of grandmas art work, often her cash and just left him in front of a screen and did the bare minimum. That was with an relation living in the house and 4 of the children visiting most days. By the end her had a grade 2 bedsore, and would have probably died months earlier in a care home as my aunt wouldn't have kept convincing the GP to prescribe more antibiotics to keep the shell he'd become alive.

With my grandmother, she also had dementia, we had a core of 3 carers on a monthly rotation, she was becoming incontinent, but they were more ladies maids keeping her company and taking her out, either in her chair or just a shuffle around the garden, she didn't want to leave the house for a home, which they enabled, but she died recently before the dementia took total control.

It's a lot of work for the family, 5 children, 15 grandchildren all involved even with live in carers, if you have the space and the money, we were paying £750 a week. We were driving 100 miles each way to cover weekends, others were in 2/3 times a day, constantly relying on carers to inform us what we needed to order, I think there would have been better care in a home. Oh and him escaping a few times and being picked up by the police/ambulance/kind passers by. We got through, over 10 years, a 2-3million paying for the care, both had good pensions, but they were no where near enough.