What type of accommodation for dad with (probable) dementia?

[Persipan]

So after his recent shenanigans getting very confused and having to be reported as a missing person, and his subsequent brain scan revealing evident issues (he's not had a clear diagnosis yet but it was strongly suggested that he has either frontotemporal or vascular dementia), my 74yo dad is now suggesting he might like to move down to live closer to me.

This is, on the face of it, fairly sensible - he's coming to understand that he most likely won't be able to drive again, and wants to be able to still see my son regularly. (And presumably me as well, but I'm not kidding myself that I'm the main draw!) However, he doesn't seem to be particularly thinking ahead to how he may decline going forward, and I suspect I'm going to need to steer him quite heavily towards appropriate options and things to consider. This would be easier if I knew what those were!

He thinks he would like to live in Small City where I work, rather than Small Town where I live, because it has better transport links there. (It does, although I somewhat doubt he'll be using them all that much.)

He can currently manage stairs so in his mind he wants 'a house' but his mobility is already not brilliant. He can't really look after his garden. He has to use the bathroom with a walk-in shower and sit on a stool while in there. And so on.

I am conscious that moving (if indeed it ever happens) could be quite disorienting and I'm keen to encourage him, if he wants to do it, towards something that's likely to work well for him for as long as possible.

Any thoughts from those who have navigated similar?

This. Anyone with experience of dementia would this is the most sensible option.

I don't doubt it is the most sensible option but it's extremely unlikely he'd currently see it that way.

This. Dementia is only ever going to get worse, which may happen quite quickly or be more gradual - hard to tell in advance. Any move once dementia has reared its dreaded head is going to be very disorienting, so personally I’d leave any big change until he’s ready for residential care - just more help at home until then.

I have heard of too many people who’ve moved into some sort of sheltered or warden-assisted accommodation, only to be asked to leave within a few months, because they are e.g. endlessly locking themselves out/bothering other residents by knocking on doors at 2 am, etc.

I know it's really difficult to reconcile what your father wants, versus what he actually needs.

I would let him stay at home until that is no longer possible, and try to get him to accept at-home care. You will probably have to be insistent - and don't call it 'care'! I said a lady was going to be coming in to help my mother with things she found difficult.

It is a huge disruption to sell his house and buy a new one (which he will inevitably not like/change his mind about) only to find in a few months things have fallen apart. As you've found, things suddenly deteriorate, and as you rightly said moving to a new location will be disorientating for him. So I would hang on for a bit and see how things unfold.

Yep don’t mention ‘carers ‘ Call them ‘drivers, cleaners, homehelps , personal assistants, a person to take you shopping ‘ etc but definately not carers.

An elderly friend of MILs had a lady like this she called her a house keeper. In reality she did all the above and was on hand for almost anything.

When the friend died we were trustees of the estate. Some money was left to the housekeeper as a thank you.

She really was worth her weight in gold having started out as a once a week cleaner they became much more

Cars home where he can ge very “ light touch “ / some places even have a “ suite “ set up with a kitchenette and sitting room - but more spendy obv. But also where “ light touch can step up to “ what ever care is needed “

we had similar with a relative nearly a year ago. We looked at all the “ supported living complexes - all very nice but you have to love early to learn about the. And take full advantage.

we went for a “ suite “ no kitchen - he wouldn’t cook he needed meals provided. And thank goodness we did. now needing so much prompting - personal care / dressing / heating aids sorting etc as well as “ hotel services “ - food / washing cleaning bed changing etc etc. mobility pretty poor too despite 2x week physio since as ( can afford ) . Now has really poor motivation to do anything other than stare at the wall sadly. We are current chasing ? Depressed

If you're old enough to remember people used to move into hotels permanently. For the company, catering and lifts. There was a special rate for permanent guests.

Just wanted to add that you should get both health and financial powers of attorney set up whilst you still can - if you haven't already of course.

My mom had Parkinson's disease which also comes with dementia. She lived in a care home for the last 18 months of her life, after my father (and her full time carer) died. Having the PoA made a difficult situation easier to manage.

See if there is any Extra Care Sheltered accommodation available to buy or rent.

Discuss POA if you haven't already.

That's correct my friend lived in the USA but was able to manage her parents finances from there when they went into a residential home together.

Also worth mentioning as you said you're a solo parent. Unless you're a solo parent to adult children or your ex if there is one is extremely hands on, you're not going to be able to respond to calls etc in the middle of the night/all hours of day whether he's in the same town or not as you. You can't leave children on their own in your house or realistically get them up and take them with you each time there's a call for help. You need to make that very clear to SS that there is no one to come and reliably help him if he calls.

Just seen this happen to someone - call from the hospital came at 10pm. But because they're a solo parent they couldn't go there until child dropped off at school at 8.30 the following morning!

Well, by way of an update to this: he actually died suddenly a few days ago. And whilst that's of course really sad, I have to confess I am a bit relieved he didn't have to go through the decline that inevitably have been coming at some point, probably sooner rather than later, so am taking some comfort from that.

Thanks to all who shared advice and best wishes to everyone dealing with their own family dilemmas.

Persipan sorry for your loss. Decline would have been hard for both of you,

@Persipan I know what you mean. My MIL and FIL died out of the blue, both within minute. Hard for the family, but a blessing for them looking back.

Sorry for your loss.

This thread just popped up on my feed. I'm so sorry to see you have lost your dad. My own beloved dad is just a little ahead in this journey compared to what you described and I feel from what I'm seeing in my df and what I read online, your dad has been spared an ordeal. I hope you'll find some comfort in this.

Sorry for your loss @Persipan
It must be difficult knowing how much you will miss him, but being relieved he won't have to go through some of the dementia nightmares

I have been following your thread as my Mum was acting similar
She was diagnosed with Alzheimer's last week

Sorry for your loss OP. But as you say, it saved him a lengthy unpleasant deterioration. I would have much preferred my mother went that way.

So sorry to hear that Persipan. I think relief is a totally legitimate feeling in these circumstances - losing your dad is obviously awful but the decline with dementia can be tortuous for both the person and their relatives. We had a relative who has been going downhill dementia wise for the last 18 years and it's been horrendous.

I hope you don’t feel guilty for feelings of relief, OP - I know I’d have felt the same. And I don’t mind admitting that I was almost envious of a SIL whose parents died very suddenly - both outwardly pretty healthy and well into their 80s - one of a heart attack, and one of a massive stroke.

Compared to years of dementia and pitiful decline for both my DM and my FiL, not to mention relatively early deaths from cancer for DF and MiL, I would have counted such deaths a blessing.

Condolences on your loss. Your dad is at peace now and has been spared the misery of slow cognitive decline. Look after yourself and remember happy memories of him over the years.