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

Greenqueen40

I agree.

I agree too

My Dad, who has vascular dementia, lived 2.5 hrs away. He moved in May and now lives with us.

We could have tried carers or assisted living but the deterioration has been fairly rapid so those options wouldn't have lasted long.

With us, hes got his own bedroom, with TV, although he usually stays up with us. We've had to install a new bathroom for him as he needs personal care now and a walk in shower where theres room for a seat and a higher toilet. I help him dress, he eats with us, I help him to bed. He comes on UK holidays with us and when we go shopping he pushes the trolley and then I don't lose him!

This option isn't for the feint hearted. It can be quite a burden at times..however the option of carers coming in still exists. So we could and probably should start to look into it.

I did try once amd visited a care home with a day centre. The staff were lovely but the place dark, dreary and stank. It knocked me for six to be honest and I've not engaged with thinking about it since.

One thing I would say is every person's dementia journey is different and everyone's home set up is different. It's hard to advise what will and what won't work.

Not. With. You.

Everyone starts out thinking they can care for their dotty old dear. But it’s not sweet, it’s brutal, and it’s relentless. Carers do masses of training for a reason.

Ok, I’ve been through this with my mum who lived alone.

Re driving…people with dementia can drive. Yes it has to be declared to DVLA upon diagnosis but OPs mum hasn’t had a diagnosis yet. Once you’ve informed them, from memory, they want you to do another test. My mum stopped driving pre diagnosis anyway because of lockdown which solved a problem in a way.

Re living arrangements. Assisted living sounds great but my mum went from early symptoms to dying from dementia in about 4 years (not saying yours will, plenty live for years!) so think carefully about how many moves you want her to make as at some point you may need to move her in a care facility and you will will have to still pay all the service charge fees etc for the assisted living home whilst you sell that to raise money for the care home fees. You will have also spent a lot of money in moving costs and fees in doing it twice and if/when you need to pay care home fees every penny counts because it’s extortionate.

The annexe in your home isn’t a bad idea, but what’s the plan re attending to her needs as she declines? It needs a lot of thought about how the decline will be coped with.

I kept my mum at home for as long as possible. I had carers go in to assist with certain things but it got to the point where she stopped recognising it as her own home despite the fact she’d lived there for 30 years and kept wanting to go and find her childhood home where in her mind she still lived. She also had falls more frequently and that was the point I moved her to a care home near me. Maybe assisted living would have kept at home longer but the care she needed in the last year was well beyond what they would have provided in assisted living so she still would have had to move to the care home.

Theres no right answer but I would probably minimise the amount of moves she’s going to make as it will be incredibly disorientating for her.

I disagree.

I can care for my Dad. And do, very well.

But I'm under no illusion that dementia is progressive and that I might not always be able to do so. He may one day need a care home but until that time comes, he loves living with us and is very well cared for.

I'd agree many options for someone with dementia are probably temporary and will need to change as the illness progresses.

Absolutely 100% this. It is very naive to think that you can care long term for someone with dementia. When it gets to constant cleaning up, someone having no concept of night vs day, risk of pressure sores etc would you be able to manage this?

From bitter experience, it’s easy to assume that keeping someone at home as long as possible is best for them. It isn’t. Even with 24hr live in care it might not be possible - ordinary houses aren’t safe for some people with dementia. They may become aggressive and need more than one person to support them. Things can change quickly and you could find yourself in a situation where the dementia is so advanced that nowhere will take her. I sympathise OP it is absolutely shit. You have to stay one step ahead at all times. I would be looking for a facility with different ‘grades’ of accommodation on site so she can move to the next level when needed.

Re driving…people with dementia can drive. Yes it has to be declared to DVLA upon diagnosis but OPs mum hasn’t had a diagnosis yet.

Her medically trained sister thinks it’s dementia. Just because they’re skirting a diagnosis does not mean her DM is safe to drive. It’s not the dr’s diagnosis that suddenly renders you unsafe to be behind the wheel.

No it’s the DVLA, who don’t automatically stop you from driving once you’re diagnosed. I’m not recommending driving with dementia just correcting some inaccuracies on the thread.

www.alzheimers.org.uk/get-support/staying-independent/driving-dementia-law

Also I think you’re unfair to say they’re skirting a diagnosis. Like anything in the NHS, it takes time, tests and appointments.

Giles Fraser wrote quite an infamous piece Why won't Remainers talk about family? - UnHerd about this a while ago - it caused fury at the time.

That’s very true, apologies.

Thing is like you say if you take her money then she has to go to a care home you'll have to give it back to pay. Or re mortgage .

My mum is still on her own and I won't be moving her in with me . It will be care at home then a care home when needed .

Does she have money aside from her house ? If not you can get a care assessment and the local authority will pay for care

How much human waste has this mouthpiece washed out of carpets? How many incontinence pads has he changed? Everyone has an opinion on what other people should be doing for their parents, based largely on what they like to think they will do.

@SockFluffInTheBath I won't apologise for not taking on my Mum .
She has been verbally abusive to me since her stroke and consequent diagnosis in 2022 and I won't live like that . Luckily for her ( or not depending on your outlook) she has enough money to pay for care and I'll use every single penny to get her the best care available .

It's an awful situation but I have a right to a life too and her admin and doctor's appointments are a full time job alone but that is enough!

I know the dementia monster has a full headlock on her now but it doesn't make it any easier to cope with 😢

My dad had dementia. The first driving test after the family “knew” he had it, he passed. The second one, some months later, he failed. That is when his license was taken away.

I have no idea when in the five years from his first symptoms to his death he was diagnosed by the NHS, or if indeed, he ever formally was.

Try and get her a driving test, OP.

Why are we using the DVLA or doctors as the definite judgement on when people should stop driving? You as an individual knows how your parent is, you know whether they are safe, whether their reactions are fast enough, their eyesight good enough and more importantly how they would cope if they did go in the wrong direction or end up in an unfamiliar situation - could they handle it calmly and get home? Don't kid yourself they are safe just because someone in authority hasn't specifically said they are not.

Why are we using the DVLA or doctors as the definite judgement on when people should stop driving?
Errrr because it’s the law if there’s been a diagnosis, the licence may not be taken away but the DVLA must be informed as must the insurance company.

You have missed my point completely. Obviously they have the ultimate legal authority. I'm talking about a moral responsibility from relatives who know full well their parent isn't safe.

I hadn’t driven with my dad for many years.

But that’s by the by. I am not qualified to assess whether someone’s reactions are still fast enough or just half a second too slow, whether their brain is processing peripheral inputs properly or missing things. I am not qualified to sit with them and do flash cards and see if they still know all the road signs, not just the half dozen they see on their weekly pootle to the shops.

Skirting a diagnosis? Have you ever tried to get a dementia diagnosis for a loved one? It’s the NHS that skirt it!

You’re talking about early stage and pre diagnosis dementia sufferers like they’re toddlers who can be told what to do not adults, with capacity who live their own lives pretty independently.
My mums driving skills did not decline immediately but she was getting lost more easily and losing her car in car parks and for those reasons I was glad she stopped as it was making her more vulnerable.
I’m absolutely not recommending driving with dementia but the decision to stop driving is difficult and upsetting for many people and is not straightforward as they are not necessarily bad drivers because of their early stage dementia.

Well said @BananaSpanner

Ahh the driving thing. Even after diagnosis its hard to remove the car. Asked the doctor - get him assessed. Showed him the route to the assessment centre - he got lost and needed to be rescued. Asked the police - let him drive, if he has an accident its £1,000 fine - couldn't care less. We removed the car as he was confused about everything. We said if you can renew your licence and insurance online and get yourself to the assessment centre you can have your car back. It will never happen.

Its not about making them more vulnerable but keeping everybody safe - not just the parent and it is a moral responsibility. It maybe upsetting and difficult to remove the car but an accident is even more upsetting and can be avoided.

• DRIVING - take action ASAP

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.
Not sure how easy it is to find a retirement village but absolutely move her ASAP while she has opportunity to adapt. Renting is the best route as she could pay masses in stamp duty alone, and only be there a year.

Do a Mumsnet search on 'Assisted Living' and 'McCarty & Stone' threads and read all of them -the replies will point you in the direction of what others wished they had done had they had more time to sort their elderly person. You might have the benefit of time. My DM was in a care home for eight years. It is not uncommon for people to be in them for longer. Reading historic threads and picking up tips is the way to go. Also read the ones about DVLA reporting.