Help with mum. Dementia and where to live ?

[lifetheuniverseandeverything42]

Hi, any words of wisdom would be greatly appreciated. My mum is late 70's and clearly has dementia. She is getting worse fairly quickly but lives in her own home quite happily and is physically fine (for her age). Whilst she is ok at the moment to drive and look after herself
I am just trying to think what would be best in the long term re housing in particular. I feel that in another year or two her current house wouldn't be so suitable. She has a 4bed 1 bath in a nice location but I think it will become a bit much and the bathroom would need work to make it more suitable as she gets older (walk in shower etc). I had wondered about building a 1 bed granny flat in our garden but she would need to fun it with her house sale. And I think that as she has dementia it may not work long term (her mum lived till over 100) so could be considered deprivation of assets and we wouldn't be able to afford to pay it back without selling. So probably a non-starter but it would keep her independent but not lonely. But if that isn't an option then what do you do? I'm just really struggling with it at the moment and would like to have an idea of options. Thanks

I think my mum is in the early stages of dementia so I've been having similar thoughts about what the future housing situation looks like.

Having spent a week away with her recently, one of the things that I realised is that she needs familiarity. She can get around and look after herself on autopilot where she lives at the moment. But when in a new environment and in a new routine her symptoms were more prominent and she was more stressed.

There's a balance between keeping her where she's comfortable and keeping her safe, but I don't know where that point is yet with my mum.

So I can't offer any suggestions, but I understand the situation and how difficult it is.

Having said that, the extra bedrooms would be beneficial if you decided to go down the route of a live in carer at some point in the future.

Assisted living development? They get their own flat, costs about £1300 a month in rent. But most are not suitable as time goes on and the dementia develops and the person needs personal care, or may start to wander. Some may have that option, you might be best researching and contacting the ones in your area and asking some questions.

Keep her in her own home as long as possible. Get her used to gadgets like tablet dispensers before she needs them

@lifetheuniverseandeverything42 what makes you think she has dementia that's got worse quickly ? As if she has I really don't think she should be driving. Is it just forgetfullness, repeating herself etc as many old people do this and are quite capable of looking after themselves ok- I'm not doubting you, just questioning as I've heard people using dementia Asa catch all on some occasions simply because the person doesn't hear or forgets stuff -

If you really think she has dementia why do you think it’s ok for her to drive!

She needs to be properly assessed and diagnosed. If you are adding to or altering your property for her benefit, to enable her to live with you and be cared for, it is not deprivation of assets.

Make sure you have PoAs in place before she loses capacity.

@yeesh yes that's why I questioned it. OP didn't give enough info on what's been happening to jump to a dementia diagnosis- I'm a bit more forgetful at 62 , my hearing isn't 100% what it was and I frequently walk into a room and can't remember why I went in there- but pretty sure I've not got dementia- just too much going on in my head- my RAM is full!!

I’d also suggest getting her assessed, she may be able to start medication and the driving is a real worry.

Thank you. POA is all sorted and my sibling is sorting all the medical side/diagnosis which seems to be well underway. If altering my house to accommodate her isn't deprivation of assets then it may be worth considering. It would mean she can live as independently as possible for as long as possible and help stop her getting lonely.

Ok, well POA is all sorted and in honesty I don't think she will be driving in a years time. I've been in a car with her recently and her driving is ok at the moment. I am keeping a close eye on it though.

I'm really just keen to know what others have done accommodation wise with parents with dementia.

She does not need any care yet but I can see that in the foreseeable future she will and I imagine it will increase over time. As I see it the options are stay at her current house for as long as possible then move in with family or some sort of assisted living, or move earlier to a mcarthy stone type place but maybe one of their PLUS type villages so there is more support available but you'd be paying costly as service charges but she'd probably find it less unsettling not having to move multiple times. I just hear bad things about selling these places when the time comes.

It's just hard and I have no experience of these issues and struggling to know what is for the best.

I have no intention of pushing her down a particular route, she is capable of making decisions at the moment but I just want to get a better understanding of the options and pros/cons.

It can be hard to know what's the best options as dementia isn't linear in how it progresses. PIL had what would be considered the perfect property, a bungalow with all amenities within walking distance and with a bit of support they should have been able to manage quite well at home for a long time.

It hasn't worked out like that though as FILs dementia meant he was aggressive to MIL and she just couldn't cope with him in the house anymore. After a complete crisis where MIL had to call 999 for help FIL is now moving to a care home permanently and MIL is moving to sheltered housing. It would have been good for them to have made a planned move rather than the chaos that we've gone through recently.

I think I would consider all the housing options and what is expected from you to support your mum in each one. You say that you don't want to push her down a particular route but if looks like it's in her (and your) best interests to move now I'd definitely be persuading her.

Having done this now with my mum and my MIL, I'd say be as prepared as you can. Diagnosis can open up medication which can be really helpful for some people.
Be flexible, look after yourself too.
My Mum was pretty young, under 70, but had vascular dementia (side effect of previous chemo) and MIL was mid ,80's.
MIL coped much less well with it overall and her frailty with being older meant she couldn't stay at home once her husband died. My Mums illness meant she couldn't remember how long anything had been happening or any appreciation of what might happen next, so she lived in the moment and was a cheerful, stoic sort so dealt with everything much more easily.

OP have you updated you DM’s car insurance policy and declared that she has dementia?

Moving someone with dementia often leads to a deterioration. Even if she can cope in the home she is familiar with you may have all.sorts of problems after a move. If you are going to do it do it as soon as possible to minimise the risk.

OOF, this is a hard jig for you, and things can go downhill really quickly. On the same note, they can stay "stable" for a while, but one thing is certain, you are never coming out of it. You need a diagnosis or noone will help - It's late, but the few things I would do. Get LPAO (sounds like you have done this) and see what you can do iro changing your own living set up, and selling your mum's house so she can live in an annex. (I am not sure about the deprivation of income stuff here, but it is definitely a thing) BUT if they get it bad, then the descent can be destroying. Even in their own annex. Even when we are cooking and cleaning, my mum (82) can no longer do almost anything for herself, including washing, toileting, dressing, has zero short term memory, no empathy, little recognition of family members, and repeats herself continually, (although at the moment she still recognises me, and a couple of others) .. She was fine at 79, My dad is still alive (83), and is absolutely adamant he will not see her going into any sort of care, and as such, he is bearing the brunt, other than the cooking and cleaning, I go round every day. He is luckily deaf (I never thought I would use those two words together) but mum will say the same thing over and over, it is not ten times, it is a hundred times. They really are a different person due to the disease. It's a horrible illness. They defo should not be driving, or if they are, not for much longer (sorry), it gets your short term memory and motor skills. Sorry I have gone on, and not been tremendous help, but I am with you in spirit xx

As the last poster pointed out the repetitive conversations can be very difficult to cope with. My mum will have the same conversation on a 10-15 minute loop, just 3 or 4 "topics". I can cope for an hour or 2 but that's my personal limit. How often can you cope with how is x doing at school ( even during the holidays) / are you going on holiday (possibly minutes after showing holiday photos/ are you going to the supermarket today (possibly just after you have filled her cupboards) over and over again because I can virtually guarantee that either you will be in the annex or she will be in your house a lot of the time.

@lifetheuniverseandeverything42 do you actually have a diagnosis? Our mother has always been a little ‘odd’ but has deteriorated in the past 2 years behaviour wise. We have had every test going and she has not been diagnosed with anything. One consultant we saw recently was incredibly helpful and delved into her personality with us. His final comment was ‘you cannot medicate a personality trait’. Very powerful for my sister and I - quite a relief really as she has always been very defiant and difficult, always controlling people and things. She is just worse now. Our brother has fallen apart as he just wants a neat and tidy diagnosis of ‘dementia’ so he can excuse her (dreadful) behaviour. Do get some clinicians opinions.

Something we are experiencing with DM is how quickly things can change.

Adapting your own home will take some time and could easily become redundant.

We moved FIL with diagnosed dementia and MIL undiagnosed but suspected vascular dementia, she was his carer, to assisted living. It all fell apart in 4 months and she's now in a nursing home with a DOLS order. She could not cope with the change at all. They were masking very well at home. Personally I think by the time its diagnosed in some cases its already quite advanced.

@countrygirl99 Thank you so much for your post. My mum is the same as this. The repetition drives me crazy (I know she can't help it) and I sometimes feel like the worst person in the world because I just cannot stand it more than a few hours at a time. I love her and this is destroying me. It is reassuring to read this thread

I think you probably have some very good points. She is already very repetitive, it does get exhausting and I think she gets a bit frustrated that I don't react how she expects (I usually do the first few times she says something but by the 6th time in a 30minute conversation I probably get a little short). I expect it probably won't work having her here. I have a SEN daughter and I'm a long way off retiring so I'd really struggle when her care needs become higher. If it wasn't for the dementia side of things it would probably work nicely (in an annexe) as it would help combat loneliness and I could help with cooking etc but it probably wouldn't work for very long by the time we actually built something. Maybe suggesting she sells her house and rents in an assisted living place, then when her needs get too high we won't have to worry about selling but she'd have somewhere with a bit more support in the meantime. I just worry about the future and feel really sad about it. Thanks.

Thanks for this, I think you are probably right. Anything we did just probably wouldn't be suitable for long enough to make it worthwhile.

Just beware.
We thought FIL's dementia wasn't too bad until we moved him!
He moved into sheltered housing near us and then we realised just how bad things were as he couldn't cope with the move and went right downhill

Thanks for the comments. It's hard to read some of this, but better to be forewarned. My sister has been taking the lead on the medical side (she's in healthcare) and despite both her and my mum calling it dementia, I checked and it hasn't been formally diagnosed yet- although sounds like it is only a matter of time. You raised one of my big concerns about moving. I was thinking that if she moved soon then she would still be forming new memories and may still settle in, but if we wait much longer it may be too late and I don't want her being confused every day.

Personally I think selling and renting somewhere in a retirement village with some additional support to clean etc and somewhere with a restaurant then that would make her more comfortable and have more social activities. But wouldn't have the difficulty of having to sell when she declines and needs more care. I suspect she'll want to stay in her house though but then we'll have to do modifications and she finds that prospect very stressful.

It's just really hard and she isn't even that bad yet. I can just see there has been a big decline over the last year and I worry.

I am genuinely astounded by the amount of people who continue to facilitate their elderly parents driving who are clearly not safe to do so. Your mum has dementia so should not be driving, no excuses. Just because you are keeping an eye on her at the moment it only takes one time for her to get confused at a junction or end up on an unfamiliar road and she panics and has an accident which could potentially kill someone. Just Google the amount of innocent people killed by dangerous elderly drivers. Please stop her now before she gets worse.