One with alzheimers and the carer getting frail

[FinallyMovingHouse]

Dear all

I have an 89 yr old mum who has middle stage Alzheimers (she seems to be nearer to the mid/end of that rather than the beginning) and an 88 yr old dad who is totally there mentally, but has had significant health issues over the years and they are now catching up with him. He is mum's sole carer; she has refused all care/intervention from medics (they're patronising, there is nothing wrong with her etc etc) and my dad gets it in the neck, on and on for hours/days on a loop if something has annoyed her. I think it's part of the disease, but she was never the easiest before that to be honest. She was only diagnosed with Alzheimers very recently and that was 'accidentally' done at a medical appointment (long story, but she would never willingly have any health checks of that sort). Mum wakes dad up constantly to ask if he's cold or wants a cup of tea and he's a darling and then gets up to make what she's offered. We think he's just exhausted, on top of everything else. Mum can be left alone for up to an hour during the day, as long as it's not near a meal time, or after 3pm, as she'll just sit. He doesn't do it often. Dad also gave up driving very recently as he was just not feeling safe and he also gets it in the neck for that from my mum, as they both feel a bit hemmed in (and won't pay for taxis!).

Dad had a TIA last weekend and is definitely a little more physically frail now, plus his ankle now seems to be starting to give way occasionally. I'm down looking after them both for a few days as he's now dosed up hard as he has significant pain in his neck (muscular, not related to the TIA). My Dsis is due to take over today until tomorrow when he's off the diazepam (and others), but I think this is definitely heading in a direction rather faster than previously.

Dad wants to carry on as now, for as long as he can, but I think there is a window of opportunity right now to make some changes, as he hates putting my sister and I out and she's FT stressful working, 30 mins away and I'm a 3 hour motorway ride away and have my adult children sorting home out (which won't be able to happen often). I also don't want to leave it to my Dsis, just because she's geographically closer, and hence I feel constant guilt and she's just knackered.

What are our options? We have looked into residential care for my mum (future planning), but that would only be for mum and not dad as the rooms are single. I don't even know if there are types of care that are for couples such as this? They own their own house and have savings, which also means that dad wants to avoid care for as long as possible.

I could definitely swing a 'cleaner' (carer) coming in daily, if I could find someone, and I'm assuming that it would be through a private care company?

My sister has suggested an alarm pendant thingy to support in case of dad falling, which sounds sensible as another safety system for them (mum may be able to ring us if something happened, but not 100% sure, so think that's an important one now).

Any ideas that I've not thought of?

Many thanks all x

Would your Dad be open to the idea of your Mum going into a home for respite care while he himself is unwell? If they were agreeable to that, your Dad would get a chance to get proper rest. He must be exhausted.

Some nursing homes do have double rooms for couples, although these seem to be quite rare. In my DF's nursing home, there have been 2 or 3 couples that I'm aware of, and they have their own single rooms - one couple managed to be next door to each other.

The current situation does seem to be unsustainable and will almost certainly be accelerating your poor Dad's own decline.

Hi
You need to act now.
My mum was my dads carer - he has Alzheimer's - and just over a year ago it got too much for her and she had 2 strokes in quick succession. We tried carers / live in carers etc for dad but in the end we had to take him to respite. The worst day of my life.
Since then, we have both mum and dad in a lovely home. They are in different rooms as they have different needs and this is something you should think about.
We've had to clear and sell their house, their car, deal with the finances.
I'm hoping you have lasting power of attorney for health and finances sorted.
My advice now is to get social services involved and see what they are entitled to, and the support that they can give. They are amazing.
Happy for you to dm me if you want more advice.
Finally. Look after yourself, otherwise you will burn out. Believe me, it happens. I'm currently signed off work for 2 weeks with stress....

I think now is the time to act, I would try and get your mum into a home for 6 weeks respite and take it from there. He needs the rest and you can see how he copes on his own for a few weeks. Could you find a local home for her and perhaps sort him out with a mobility scooter to go see her in and get to the shops? I had this at the back of my mind for my dad when mum had to go into a nursing home but as it turned out he was fine to carry on driving until after she died.
At those ages realistically they're not going to be around much longer so it's probably time to start spending the savings to give them both an easier life. Of course there'll be resistance but honestly you will all benefit from getting this in place.

Thank you all so much for your replies; all very sensible, honest and clearly from painful personal experience.

I've just had a talk with dad, and he's absolutely adamant that he:

1. will not go in a home, even if it makes mum happy, as it's just too expensive and HE doesn't want to live in a home. He'd rather die sooner and keep mum at home until the time comes.
2. will not put mum in a home whilst he's still around (and not in hospital or something).
3. does want us to put mum in a home once he's gone (we'd already worked that one out!). We all think she'd hate the idea but actually like the experience, as she would have people to talk to/at.
4. won't try and bring in carers at his home as the grief he'll get from mum is just not worth it. He's happy to care for her, but not happy to care AND get the grief.

They can't get any carers allowance/owt else, as his state pension is too big.

I think that we're going to have to wait until he's in hospital for something (which may happen soon, as he has some interesting blood results from yet another issue), and then go for respite. From there, we might then be able to persuade either party.

Sorry, meant to say, yes, financial and medical POAs were sorted 20 years ago.

Do they get attendance allowance, that isn't means tested.

They should be legible for attendance allowance as that’s not means tested. We got it for my dad and then sorted a dog Walker/cleaner as it was ‘free’ (using the attendance allowance. Unfortunately you are probably going to have to wait for the crisis to happen. Can you scout out homes nearby to work out where you would like your mum to go if something did happen to your dad or if he could no longer cope. Would it be in current area or nearer to you etc?

You should be able to claim attendance allowance for your mum and possibly your dad too. There’s a whole section on someone needing to be watched over. Ring for the form don’t download it yourself as if you ring any payment will be backdated to the date you ring. Get some help completing the form either llocal age uk or citizens advice as there’s a particular way of completing them. AA is not means tested or taxable. Also it’s possible you may be able to get some reduction in council tax due to mental impairment. If awarded perhaps your father would be happier using taxis or might agree to having a cleaner in which might help a bit. Also online shopping can be very helpful this is something you can do remotely which takes the burden off your sister a bit.

Is your Dad being adamant about staying at home with no external carers etc, whilst assuming that you and your DSis will provide daily visits/care/assistance? Does he know that you cannot do this?

Sadly, you may have to both step back ('put on your own oxygen mask'), and let the crisis happen. Not because you don't love them and don't want them to be well-cared-for, but because you do, and things need to change in order for that to happen.

The Cockroach Cafe threads are long-running discussions of the tribulations of elderly parents, and you might want to take a look www.mumsnet.com/talk/elderly_parents/5243659-cockroach-cafe-new-year-2025

The TIA is a warning to get plans in place for additional help for your DPs, including care at night so he can rest. Whether that's live in care, carers coming in 4 times a day or a nursing home for one or both.

We hunted for ages to find a care home for our frail aunt & uncle together (they'd been together since teenagers but had different health conditions - Uncle had dementia, but both were prone to falls and incontinent. Many placements would split them up but we felt splitting them up would exacerbate Uncles dementia decline as he relied on her so much. We found a new build nursing home where they could have 2 adjoining rooms on a dementia floor and sold their house to pay for their care. Daunt is now widowed with severe dementia and has just the one room there.

What about a daycare centre once a week. That would give your Dad a break. As a temporary help.

Dear all, thank you for all of the info. Apologies for the lack of reply but have been ill since I returned home.

I didn't know about attendance allowance, so will look into it - thank you!

To answer some of the queries:
Daycare is a no, as mum won't go (doesn't like other people, they're all old and common (yup) etc, etc).
My Dsis and I have found a place that would be fab for mum, but they won't save a space unless she has a move in date (understandable).
Dad will not go into care with her and he is entirely mentally capable so we wouldn't do it to him. It will take a crisis and that will happen sooner rather than later I think.
Dsis doesn't do daily visits, but weekly as an absolute minimum and I ring daily also. We've found a cleaner, but mum saying that they don't need it! Dad and sister will likely override her on that one, as dad not wanting to clean or live in dirty bathrooms etc.

The thing that may make a difference now is that mum has now started to refuse to have a bath....says she loves baths, can get in and out, but has 'had one recently' and hence refuses point blank. Not sure that dad will put up with that as he doesn't want to physically care for her and her Alzheimers is really kicking right now. We shall see. x

It’s hard, my PIL were exactly like this and I expect my parents will be exactly the same. I think that all you can do is wait for the inevitable crisis and take it from there 🤷‍♀️ For us, the limits of FIL being able to ‘care’ for MIL at home were reached quite rapidly, when MILs condition accelerated and she stopped being able to wash / dress / toilet etc. She also didn’t take her medication correctly, didn’t drink or eat enough, and ended up in hospital. From there she went straight into full time nursing care.

Basically, he / they want nothing to change and for life to stay the same. Unfortunately, that’s not an option. Things will change, and they won’t have a plan in place to cope when they inevitably do. For my parents, I’ve pretty much made my peace with this, and focus instead on setting my own boundaries (including how much time / energy I am willing to spend worrying about the ‘what ifs?’) as that’s all I can really control.

I think what is positive in this scenario, is that you and Dsis are on the same page in terms of what you are both doing and what it is feasible for each of you to do.

Unfortunately yes things will decline and a decision will have to be made. I would like it too if my DPs got a cleaner- DM has macular degeneration ( poor eyesight) and I managed to get her full attendance allowance, but no there is always some excuse. I refuse to do it myself and will press the point when it gets too bad. But unfortunately whilst individuals still have capacity you can't force them to make sensible decisions.

Do you and your Dsis have power of attorney?

Agree with all the posts here...my mum died last year ..I live in Spain with my hubby who's Spanish now as had work ending injury and only child..did loads for my parents over years and thru COVID but this time last year she went into hospital after a fall and got very confused doctors told me she wouldn't come out but did ...she should never of come home left downstairs in a hospital bed ,they live in a three storey house...now have a stair lift...she got better for awhile and here's the kicker I knew a really nice carer who went round while she was in hospital did alot of cleaning and got on with dad really well...mum was horrible to her and kicked her out....and wouldn't have any help... eventually my dad was picking her off the floor all the time ,day she died he called me crying he couldn't get her up... ambulance came she died that night...I visited last xmas and they were both horrible...mum made me throw all my clothes out...I ky left a few as a change of clothes....went home in may for funeral it was awful house a mess ,dud what I could...dad has TV on so loud u can't hear yourself neighbors have been moaning... actually neighbours been round to help too... honestly DO Not put yourself thru this I only coped with the funeral because my friend who lives locally did flowers and took us to funeral....also co-op girls who did funeral were amazing and still go visit him and do stuff for free ...they had so many lovely people try to help...just kept saying no... even the lovely lady who rents my old house was supposed to liaise with NHS when mum got home and they never showed then dad refused her help too and eventually admitted nurses aren't coming any more! Now finally there's a lady from community health got to grips with him and finally he has carer going in few times a week he went for respite a month ago cleaned him up a bit but he still won't have cleaned...has taken microwave and air fryer upstairs to cook...I know a guy here who is suffering with stress as his mother is pretty much demanding the same...I have poa but dad isn't bad enough to use it... honestly step away and as has been said let events happen they just don't seem able to see what's happening....I e worked for local council for years have had lots of lovely old people I e driven on my community bus one died yesterday very sad but it's beyond me why some people refuse all help...it'll kill u I don't ever wont to go back there...