FWIW, if he is 83 and his memory is going and he already has contacts and activities around him - it’s probably too late to move him. If you were to do it, with his agreement, you’d need to do it pretty much immediately whilst he still has the capacity to make new contacts.
Re a care home - by the stage when he might need to move to a care home, as you say, location might be less important.
Also, not to be brutal, but he is 83 - he might never reach that stage and might be able to live out the rest of his life in his own home without cognitive decline reaching that point before he dies of some other cause.
You're right, @Doublethink , although dementia is a big thing (the normal thing, unfortunately) in our family and I've seen all this several times before, at much more of a remove. I guess I am doing a bit of mild catastrophising, but perhaps there might be a useful purpose in rehearsing these thoughts here with others. I am amazed he has been so actively social in the two years since Mum died - he was not at all so, earlier in his life. I can't imagine him pulling that off again now, so I think you're right - it'll be a 'sit tight and wait' thing. Thanks again.
H @mark_in_manchester , it might be an idea to go and look at some care homes near you to get a feel of which ones you think might suit your dad and which ones wouldn't. If you find one you really like you could put your dad's name on the waiting list. No two homes are alike and what suits one person won't another. In my experience things were OK until very suddenly they weren't. With my mum it was her forgetting she was ninety so she was heading to the local pub to flirt with the young men, she even brought one home. Fortunately the guy seemed very honourable so no harm was done, but it really alerted me to how vulnerable she was.
When my parents had Covid, my mum was discharged with a dnar in place which hadn’t been discussed with us. When they had both recovered we asked them to do advance directives for the care they wanted in the future, including if they wanted cpr as we realised we didn’t know. If you haven’t already, and it’s possible to have the conversation with your Dad it is worth doing. Both what level of care he wants if seriously ill, but also about future care arrangements if he needs them.
Don’t totally discount the possibility of live in home care. It is expensive, but not necessarily more expensive than a care home, depending on the agency and the level of care required. This can also be relevant for short term end of life care. When my grandmother was dying, at home at the age of 98 over about 3 weeks - the NHS provided “hospice at home” which was 4 calls a day for personal care and to turn her in bed, a hospital bed and a morphine driver - but we paid an agency for waking night staff, so although my parents were there, they could get decent sleep.
Hopefully such a thing is a decent way off for your Dad, but it can help to have a contingency plan - who you would contact if he suddenly needed increased care etc. Even if that is only knowing who to contact in the health and social care systems locally. But often agencies can help you and your parent make a “what if” plan for any crisis situation and that can help everyone involved feel less anxious.
When my father needed full-time residential care, the PTB in Orkney were very keen that he should look for a care home in or near Edinburgh, where my brother and sister and my sister's grown-up children all live (David and I were in Canada, so not in the equation). It really wouldn't have been a good solution: although they were all there, at that time they were all working, and wouldn't have had time to visit him all that often, and for the bits in between their visits, he'd have had nobody. He'd lived in Orkney for over 50 years, and that's where all his friends were; we got the impression the PTB were just trying to offload him.
He ended his days in the local authority care home in Kirkwall, still being regularly visited by a few old friends, and by the family when we were able to get there, and while not absolutely ideal, I think it was the best solution.
Hi @Gee D , I don't think you read my post properly, or indeed my previous post where I spoke of my mother dying in 2023. I think we all want the best for our parents, but sometimes, as was the case with my mum, they become unable to live independently and difficult decisions have to be made.
Sorry Sarasa, but I don't pick that up in the post of 6 Jan to which I referred. I did not look back to a previous post. Youi're certainly right in stressing the need to sort things out.
In my working years, I had quite a bit to do with making arrangements for people who are becoming incapable of managing their own affairs, but strictly from the legal aspect. Not from the practical position of finding accomodation and so forth. The work I'd been doing there was of great assistance when the time came to making arrangements for my father when he became incapable.
I spend most of my working week sorting out issues with setting up care, equipment and adaptations, so PM me if there is any specific advice you need.
On the whole I would agree that your dad is probably better off staying where he is, with care set up to meet his needs, and family visiting when possible. If he moves near you, he won’t have anyone else, and that could get stressful both for you and for him.
Some general guidelines:
- Adaptations to people’s homes (e.g. stair lifts, walk-in showers) are arranged via occupational therapists in the local council - not by the NHS. There’s a common misconception that all OTs work for the NHS as we all wear the same uniform. Not all of us do.
- Equipment also often comes from OTs in the local council, but may also come from OTs in the NHS. Some areas have joint NHS/council equipment stores. There are some items that come from district nurses or physiotherapists instead; I can’t give you a definitive list as this varies somewhat between regions.
- Social workers, employed by the local council but sometimes based in hospitals, are generally the ones who get care packages set up. In some areas (including mine) it is possible for social services OTs to set up care but the social workers still do most of it.
- The NHS will only arrange and fund care, as Doublethink explained, if someone is assessed as “Continuing Health Care” (CHC) - i.e. that they meet a very specific set of criteria re what they can manage for themselves. The threshold is high; you can be quite disabled and not expected to live much longer and still not meet CHC criteria.
Glad you are here and happy to help @Aravis, I think sometimes people come into the system after a crisis and can sometimes be at a loss. That system knowledge is so valuable.
We managed to keep Dad at home in the last year of his life with sister and I splitting the week to help care (only achievable because we lived within an hour of him), supported by in home services when we couldn't be there. Towards the end he was happy to "consider" retirement village living, but he was well beyond that, so we kept with the existing plan. We were fortunate in having lovely neighbours who were happy to act as an emergency contact for him when applying for his pendant alert.
It's very hard to balance the desires of the elderly person who may not accept their decline with the practicalities of safety and being able to keep their independence for as long as posssible.
I'm very proud of my Aunt who has recently organised her own wheelie walker, shower chair, personal alert and meal deliveries. Her life long mindset of being a strong independent woman is carrying her though (for the moment, anyway).
The live-in care we had for my dad was largely funded through something called ‘direct payments’. He did have to contribute but it was surprisingly affordable because of this. Talk to social services and ask about direct payments.
Direct payments is my current specialism (around 90% of my cases)!
I won’t go into all the intricacies here. Just be aware that local authorities don’t tend to grant 24hr care in someone’s own home, either via direct payments or via a care package. The maximum I can ever get agreed by a manager (in exceptional circumstances, and I have to argue for it) is the equivalent cost to putting someone in a residential home, which in practice is just over 60 hours of home care at direct payments rate. But if you can get a good deal with a live-in carer (which tends to be a lower hourly rate) it could work out well; I can think of a few cases where we’ve set that up and everyone is happy.
Direct payments is something I asked to do as the system was a bit of a mess (they didn’t previously have any social workers specialising in this area, let alone OTs). I’m fine with it - I have a fairly unusual caseload and meet many fascinating people who think, usually correctly, that a standard care package wouldn’t suit them.
Comments
Re a care home - by the stage when he might need to move to a care home, as you say, location might be less important.
Also, not to be brutal, but he is 83 - he might never reach that stage and might be able to live out the rest of his life in his own home without cognitive decline reaching that point before he dies of some other cause.
Don’t totally discount the possibility of live in home care. It is expensive, but not necessarily more expensive than a care home, depending on the agency and the level of care required. This can also be relevant for short term end of life care. When my grandmother was dying, at home at the age of 98 over about 3 weeks - the NHS provided “hospice at home” which was 4 calls a day for personal care and to turn her in bed, a hospital bed and a morphine driver - but we paid an agency for waking night staff, so although my parents were there, they could get decent sleep.
Hopefully such a thing is a decent way off for your Dad, but it can help to have a contingency plan - who you would contact if he suddenly needed increased care etc. Even if that is only knowing who to contact in the health and social care systems locally. But often agencies can help you and your parent make a “what if” plan for any crisis situation and that can help everyone involved feel less anxious.
He ended his days in the local authority care home in Kirkwall, still being regularly visited by a few old friends, and by the family when we were able to get there, and while not absolutely ideal, I think it was the best solution.
Sorry Sarasa, but I don't pick that up in the post of 6 Jan to which I referred. I did not look back to a previous post. Youi're certainly right in stressing the need to sort things out.
In my working years, I had quite a bit to do with making arrangements for people who are becoming incapable of managing their own affairs, but strictly from the legal aspect. Not from the practical position of finding accomodation and so forth. The work I'd been doing there was of great assistance when the time came to making arrangements for my father when he became incapable.
On the whole I would agree that your dad is probably better off staying where he is, with care set up to meet his needs, and family visiting when possible. If he moves near you, he won’t have anyone else, and that could get stressful both for you and for him.
Some general guidelines:
- Adaptations to people’s homes (e.g. stair lifts, walk-in showers) are arranged via occupational therapists in the local council - not by the NHS. There’s a common misconception that all OTs work for the NHS as we all wear the same uniform. Not all of us do.
- Equipment also often comes from OTs in the local council, but may also come from OTs in the NHS. Some areas have joint NHS/council equipment stores. There are some items that come from district nurses or physiotherapists instead; I can’t give you a definitive list as this varies somewhat between regions.
- Social workers, employed by the local council but sometimes based in hospitals, are generally the ones who get care packages set up. In some areas (including mine) it is possible for social services OTs to set up care but the social workers still do most of it.
- The NHS will only arrange and fund care, as Doublethink explained, if someone is assessed as “Continuing Health Care” (CHC) - i.e. that they meet a very specific set of criteria re what they can manage for themselves. The threshold is high; you can be quite disabled and not expected to live much longer and still not meet CHC criteria.
We managed to keep Dad at home in the last year of his life with sister and I splitting the week to help care (only achievable because we lived within an hour of him), supported by in home services when we couldn't be there. Towards the end he was happy to "consider" retirement village living, but he was well beyond that, so we kept with the existing plan. We were fortunate in having lovely neighbours who were happy to act as an emergency contact for him when applying for his pendant alert.
It's very hard to balance the desires of the elderly person who may not accept their decline with the practicalities of safety and being able to keep their independence for as long as posssible.
I'm very proud of my Aunt who has recently organised her own wheelie walker, shower chair, personal alert and meal deliveries. Her life long mindset of being a strong independent woman is carrying her though (for the moment, anyway).
I won’t go into all the intricacies here. Just be aware that local authorities don’t tend to grant 24hr care in someone’s own home, either via direct payments or via a care package. The maximum I can ever get agreed by a manager (in exceptional circumstances, and I have to argue for it) is the equivalent cost to putting someone in a residential home, which in practice is just over 60 hours of home care at direct payments rate. But if you can get a good deal with a live-in carer (which tends to be a lower hourly rate) it could work out well; I can think of a few cases where we’ve set that up and everyone is happy.
Direct payments is something I asked to do as the system was a bit of a mess (they didn’t previously have any social workers specialising in this area, let alone OTs). I’m fine with it - I have a fairly unusual caseload and meet many fascinating people who think, usually correctly, that a standard care package wouldn’t suit them.