Help with mum. Dementia and where to live ?

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.

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.

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.

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.

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.

I agree too

Greenqueen40

I agree.

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.

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

@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

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.

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.

@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.

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.

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

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.

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

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.

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.

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