Stress of dealing with dementia

[sugarandcyanide]

MIL has been diagnosed with dementia following symptoms that have developed over the previous few years. Over the last year she has deteriorated rapidly.

It's so difficult to cope with. Husband is doing his best whilst also working in a job which requires long hours. He goes over whenever he can but when he's not there she is calling constantly.

It feels like we're constantly problem solving. She loses things all the time so we've tried tech to fix that, locks herself out so we got a key safe, can't work TV or phone so we've had to find solutions for that. It's emotionally draining and we're both struggling.

We're trying to find some sort of assisted living but it's overwhelming trying to decide if it's right for her and deal with the finances. She wouldn't agree to a care home and still has capacity but she needs to be somewhere with support, we can't work full time and care for her.

I don't know what I'm asking for here but my mental health is falling apart and I can't keep burdening my husband with it when he's got enough on his plate already. I have some counselling lined up but I'm not expecting miracles.

We're not even 40 yet, we can't give up our lives to care for her. How do people cope with this?

Also I documented everything - recorded phone calls - you name it it was only way I could get the elderly geriatric mental health services to take me seriously and push for a best interests meeting as my mum was not quite at the point of a deprivation of liberty order . My mum did not go quietly into care home . When we took her for respite with the intention of it likely permanent - she had a mexican stand off in the care home garden refusing to go in and returned home She did eventually pass there - they were extremely kind and professional. She was legendary at the care home and they were experts - they said they would never forget her ! They also put me back together a bit . If you can find one like this - they are worth every penny .

@sugarandcyanide you say she is already wandering and getting lost. This will continue at extra care, and are likely to worsen because it is a new environment. She may try to get into neighbouring houses. I very much doubt that is behaviour they will tolerate. And you need to bear in mind that this is the best she will ever be. Her behaviours will deteriorate.

You say MIL can tell you all about what her friends are up to, but are you sure what she is saying corresponds to reality? People with dementia tend to confabulate (invent things) to fill the huge gaps in their memory and knowledge, as mentioned by a previous poster. My friend’s father would very convincingly tell people all about his life in Australia. He had never been to Australia.

I guess that to fund a care home, the house will need to be sold. I would start thinking about how to accomplish that. With dementia things are almost always worse than you think they are unfortunately.

Agree with Category re what her friends are up to. My mum tells me she meets 2 friends regularly for coffee in town and one of them picks her up and takes her to an activity every week. She sounds totally plausible. But one of the friends died in May after several months of illness and the other has barely left the house in a year and has given up driving. Not only that but the activity hasn't run for nearly 2 years.

So much of this sounds familiar, it's good at least to know that lots of people are in the same situation.

The things she tells us about friends are generally true, we know them too. She sometimes gets minor details wrong, like she'll tell you they've gone to Spain when they've gone to Greece, but the gist is correct.

We had been trying to keep a record of all the things she was doing to get authorities to take us seriously, it was hard work getting a diagnosis. It's difficult to get a view of how someone is in a short appointment when sometimes they appear fine. She passed the memory test the GP did initially.

We've been back and forward to the GP and various mental health services for years really. I was fuming at the recent coronation street storyline where she went to the GP once and got a dementia diagnosis! 😅

It is maddening to see these soap dementia storylines isn't it. And within a year or two of diagnosis, the character has died, they never show the years and years of messy deterioration.

If you don't think she is ready for a care home, then wait a bit and see how things go. I wouldn't proceed with extra care though, as I don't think it would work out for her and you'd end up having to move her on. At some point there will be an event which will make it clear she cannot safely be left on her own and needs supervision 24/7.

For sure - I remember when Babs Windsor partner I think did a documentary . It was all very sad of course but I'm sure they had a lot of money to help with the care. My mum had a decent chunk too - I spent 30k in three weeks when the covid restrictions came in) on emergency 24hr live in carer to stop my mum wandering off whilst I begged a man from the geriatric mental health team to bring my mum a prescription for anti psychotic. I would sit in hospitals often and wonder what happened to people who had no one to care for them or check in on them. I learnt all the medical lingo to get doctors to listen to me & I could only do it as I gave up my career ( I just never went back after a second maternity) and my husband pulled the slack with the kids. The care company manger was brilliant and on my side with local connections to SS to help us with the legal side. I didn't do any of this because of I was any kind of saint - I just had no choice . I bitterly got angry inwardly when people at the school gate complained about grandparents not doing things right with childcare - I thought " you have no idea" I wondered what people did when they had no money or advocate - my husband just said they suffer and die I guess. It took me a long time to watch " The Father" with Antony Hopkins but it is poignant and I can recommend "Elisabeth is missing " with the late Glenda Jackson. Your'e not alone - there are a lot of people in this situation - please use mumsnet - as I said before it helped me - I always direct people in this situation to this forum in particular - take care x

How close to £23,250 capital, outside of her property, is she? Provided she doesn't own any additional property or land, the LA would start to commission at this point.

Obviously, for long term residential care or Housing with Care/Supported Living, her property would be included in the financial assessment, but the LA would still support if other savings are below £23,250.

I think what I'm trying to say is that we appeared to have advantages in helping my mother and it still broke me . It took time away from family and a newborn I never got back.

I honestly wouldn’t bother with an ‘extra care’ facility. Sooner or later, and very likely sooner, it won’t be enough, especially if she’s already wandering. She’ll need someone on hand 24/7, which will mean a care home.

Until then, if you possibly can, get some sort of help in every day, or as often as you can - to clean, generally help, chat with her, prepare a meal.

Have you got P of A for both finances and Health and Welfare? And would she be self funded?

Hardly anybody ever wants to move to a care home, but there often comes a time when their needs have to trump their wants, especially when relatives doing their best are run ragged.

My DM would never have agreed to move to a CH, but by the time it happened (TBH rather too late) she simply wasn’t safe to be left alone at all any more. We had to get her there by stealth, but that’s another story…

Without wanting to derail OP's thread, what are establishments like that called? I wasn't aware places with different levels of support existed, and something like this could be relevant for my DM in the near future.

'Assisted' or 'independent' living. In my experience, people have their own flat with a certain level of care from carers on site (care plan in place). Bear in mind,these are classed as independent living,so the residents can come and go as they please. Not ideal for people with dementia, which I have found out way down the line!

@bringincrazyback have a look for ‘extra care housing’ for your area. That’s the highest level of support available short of a nursing home. There are different shades of council funded versions (at least in my area) and there are private versions (again in my area these are mostly £££ such as Richmond Villages, with the flats being expensive to buy and the service charges enormous, though you also get a lot for your money) and the private versions may also be linked to a nursing home on the same site.

There is always the issue that moving someone with dementia is likely to cause a sharp increase in cognitive impairment, temporarily or permanently.

Hi OP I could have written your message. I’m going through exactly the same thing and it’s so hard, I’m sorry I don’t have any advice but send you huga.
reading all the responses is terrifying but helpful so thanks to everyone else.

My Dm would never have agreed to a care home either, since according to her, there was nothing wrong with her, even when she could no longer even make herself a cup of tea.

None of us lived very close by, and at one point she was phoning my poor brother 20 times in ONE HOUR, because e.g. she’d forgotten how to work the TV remote, or was trying to do it with the phone. Also was not washing herself, was wearing dirty clothes, and endlessly locking doors and hiding keys etc., so in case of a fire she’d never have been able to get out - this TBH was my main worry.

it got to the stage where she simply wasn’t safe to be left alone at all any more. I don’t mind admitting that no way was I having her to live with me - apart from the fact that we’d already been through the whole nightmare with FiL, she was never the easiest person anyway.

Luckily she was self funded, so without wanting or needing the involvement of SS (we didn’t need anyone telling us what her needs were) we found (after quite a lot of looking) a very good, dementia-only care home, but were bobliged to get her there by stealth, since she’d never have agreed to go.

@GETTINGLIKEMYMOTHER how did you get her in without her knowledge? I fear I may be reduced to this, parental visit yesterday made me realise that it’s not just DF 92 who has (undiagnosed) dementia, DM 87 likely has it too as her personality has totally changed from being polite and thankful to downright rude.
This all happened over the past 6 months and the real issue is when one passes, there is zero way the other can live alone, but I haven’t even dared start the care home conversation as between the two of them and DMs carers for her physical illness, they are just about coping.

It was planned like a military operation, and TBH I’ve never dreaded anything so much in my life! For some time my poor DM had been very reluctant to leave the house at all, so we had help from the GP, who prescribed a mild sedative, IIRC Valium. Elder sister (who lives a 5 hour drive away) stayed the night before, and surreptitiously packed a bag for her.
BiL was already there, Dbro arrived on the day - we told her we were all going out for lunch. The care home (a 60 mile drive away, very close to where I live) had said that arriving for lunchtime would be best.

Sister and I drove her, Dbro and BiL were following later, with some smaller items of furniture for her room.
All the way there I was freaking out in case she twigged, and demanded to go home! But thank goodness, no such thing happened.

I really thought she’d twig once we arrived at the CH - you’d think it’d be obvious! - but I dare say it was a measure of her dementia by then that she didn’t. We were all shown to the dining room, and given a very nice lunch - again, I really thought she’d twig, but evidently thought it was a restaurant and wanted to pay!! You can imagine how we felt! (Her ccs were no longer valid anyway, Dbro and Dsis had taken over PofA for finances well before.)

After lunch, and a little walk in the garden, DSis was brave enough to tell her she was staying, I don’t think I could have done it! BiL and Dbro had meanwhile put the familiar items in her room. She wasn’t happy, but didn’t actually kick off.
TBH it went better than we’d dared to hope.

I wish I could say she settled happily and quickly, but she didn’t - for ages (almost until she’d stopped recognising me) the first thing she’d say was, ‘Have you come to take me home?’ - home was of course sold to help fund the fees. And TBh she forgot that anyway - the home she often spoke of later was the one she hadn’t lived in since before WW2.

But it was an excellent care home (an Abbeyfield specialist for dementia) with lovely staff, and we were very happy with it. She was almost 89 before she moved there, and went on for another 8 years. Which to me - although she did have the general constitution of a rhinoceros - is a good indication of the care she received. TBH I often wished she could have quietly died in her sleep before we had to put her through all this, but by then there was simply no alternative and because it was such a momentous decision, we’d left it rather late anyway.

I wish you all the very best with your own parent! I know all too well how hard it is.

PS, for rookiemere, I forgot to say that although we’d never involved social services, the care home did send a social worker on a home visit, to ascertain that DM did actually need residential care, and we weren’t having her put away for our own nefarious reasons. But it was all very informal, just a ‘nice lady’ visiting.

Thank you @GETTINGLIKEMYMOTHER that sounds really hard, but you had no other choice. It is hard to know what to do for the best.

This must have been so horrible for you to go through! Very sad when they have to go against their wishes.

We're still undecided on MIL. Assisted living is off the table as we've been told it isn't suitable. We're trying to get social services involved again, they are supposed to be doing another assessment.

We've changed the care company and the new one is much better, much more proactive and caring than the previous.