Please or to access all these features

Elderly parents

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

46 replies

Persipan · 04/06/2024 22:48

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?

OP posts:
New posts on this thread. Refresh page
MaryMack · 08/07/2024 10:15

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.

GETTINGLIKEMYMOTHER · 08/07/2024 10:06

justasking111 · 07/07/2024 22:13

@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.

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.

Ineffable23 · 08/07/2024 08:32

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.

catofglory · 08/07/2024 08:24

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.

jackstini · 08/07/2024 06:46

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

LadyChilli · 07/07/2024 22:34

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.

justasking111 · 07/07/2024 22:13

@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.

Mum5net · 07/07/2024 16:14

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

Persipan · 07/07/2024 15:02

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.

OP posts:
EmotionalBlackmail · 09/06/2024 14:36

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!

justasking111 · 09/06/2024 13:05

Pfaffingabout · 09/06/2024 12:47

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.

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.

Turmerictolly · 09/06/2024 12:53

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

Discuss POA if you haven't already.

Pfaffingabout · 09/06/2024 12:47

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.

justasking111 · 09/06/2024 12:38

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.

Helenloveslee4eva · 09/06/2024 12:32

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

justasking111 · 09/06/2024 12:29

Frites · 09/06/2024 12:22

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

Frites · 09/06/2024 12:22

catofglory · 09/06/2024 11:10

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.

catofglory · 09/06/2024 11:10

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.

GETTINGLIKEMYMOTHER · 08/06/2024 08:08

justasking111 · 05/06/2024 23:27

Both my mil, mother and father went into sheltered type accommodation at least a decade to fifteen years before they needed any kind of help at all. Then it was great because there were managers, panic strings, suitable bathrooms and no stairs. They still had cars and independence. Were familiar with the area.

Unfortunately it's too late for your father now. I'd leave him where he is. Organise whatever care he needs until he feels ready for a residential home or you have to make the decision for him.

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.

Persipan · 07/06/2024 20:06

marmaladeandpeanutbutter · 07/06/2024 19:42

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.

OP posts:
marmaladeandpeanutbutter · 07/06/2024 19:42

Frequency · 04/06/2024 22:54

Somewhere he can remain once his condition sadly worsens, so somewhere with lockable doors, door alarms, 24 hour care.

I used to work in care and we had a lot of people who would move in in the early stages of dementia and a few months later we weren't able to safely manage them and had to fight SS to find them somewhere more suitable.

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

Frites · 07/06/2024 18:15

Your Small Town sounds perfect . Our LO was a wizz on the computer for their age (80) . All of a sudden almost ,they had no idea where to start with it. Sorry that you and your DF are going through this.

Persipan · 07/06/2024 16:41

Well, as if to underline everyone's points, he's just called me (by accident) and told me he can't remember how to log on to his computer.

I agree that I am not enthused by the idea of the retirement village; I think it would be much more difficult to offload when we (inevitably) need to sell it then a normal property would.

I may try to get him to think again about not wanting to live in Small Town. In my mind, probably what he needs is to be a) in a bungalow or other single-level property, b) close to stuff so he can interact with people and not be completely isolated, and c) somewhere I can easily get to/drop by regularly. There are perfectly decent bungalows in Small Town (there's literally one for sale in the street behind mine); there's an interesting high street, town square etc with cafes and a library and people; and, well, I literally live there. I suspect his impression of Small City is that it's also effectively like that - lots of stuff nearby and easy to get around - because he doesn't realise that I've always prioritised living very, very close to things. Actually, most of it is like most of anywhere - lots of suburbs with not much in them. And effectively on the venn diagram of a, b and c I could probably find him something there that does two of those things, but realistically not all 3.

OP posts:
Mum5net · 07/06/2024 14:38

There are some very good points to consider, OP.
It is probably inevitable he is headed towards full time care in a care home, but when that will be, you don't know.
You either leave him where he is until that time comes or you intervene.
If you make an intervention, you want that intervention to be mutually beneficial to both you and him.
Knowing now that you have DC, a full time job and are a non-driver, personally I would prioritise bringing DF as close to you as soon as you are able. @catofglory is right, calls at anti-social hours will escalate. As things stand, you shortly will have his car keys and car disposal to manage. Take my word, this is difficult from a distance.
Sadly, there will be many other issues heading your way of a similar magnitude.
It's tough enough emotionally grieving for the loss of his liberty and personality. Next, adding in the micro-management of his everyday becomes quite overwhelming. I send you a hug, as this is not what you were hoping when your lovely DF is only 74.
Are there any ground floor one bedroom properties within walking distance of you that would work, rental or otherwise?

catofglory · 07/06/2024 13:47

I would be careful with a retirement village. We looked into it for my PILs and the properties can very difficult to re-sell. I was glad they didn't do it.

You can't predict how quickly things will deteriorate, but you can try to future-proof things as much as possible. If your dad wants to move near you, it may be better to find him a rental (just a regular flat, not with a warden/extra care). That would allow you to adapt more easily when he needs to move on, and assuming he has enough savings you can buy at-home care as needed.

A complication is that you don't drive, and you are guaranteed to get frequent calls from him or neighbours for help, often at anti social hours, so if he is a distance away (you said he doesn't want to live in the town where you actually live) that doesn't sound a good option. You need to be able to get to him easily.

Be aware that at every stage, your dad will be certain that he does not need more help and can manage absolutely fine, even if he is getting lost or setting fire to his dinner.Confused