Picking a care home for future need

[Agzy]

At present my OH, Pauline, doesn’t need a care home per se, but she says she wants an assisted living flat for herself so I can get on with my life so to speak. She will not listen to objections or suggestions but has agreed to have a look round some with me. The problem is I just dont know what to do in regard to getting on waiting lists, finding out potential costs involved or even what rights we may have in regard to such accommodation. At present we live in a privately rented semi detached house (ex council) in which I have had agreed adaptations made and it is just the stairs that are a real problem.

 

[Grannie G]

Hello @Agzy

How long do you think your OH Pauline will be able to live in assisted living, by herself, before she needs more help and support. You know the progression of dementia and what it leads to but does Pauline?

I know I`m going to sound patronising but I can only suggest you humour her, go along with the suggestion and make enquiries. Perhaps you will be able to take as much time as possible doing this.

My husband wanted to move back to Manchester a year or so into his dementia. I put our house up for sale twice, and at the last minute he got cold feet and we had to let people down. It was when I realised he was unable to take responsibility for a decision that I just went along with his suggestions but always used obstacles as delaying tactics.

I remember trailing around car showrooms looking to buy a new car when my husband had stopped driving and wanted to start again. When he saw the prices, even of second hand cars when he had always bought them new, he was overwhelmed by the cost and after a while stopped wanting to look.

Do you know if Pauline has lost insight into her condition? I don`t know her and may be completely wrong but her suggestion seems imappropriate at this stage of her life.

Apologies in advance if my response is intrusive. If the stairs are the biggest problem could you get help to install a stairlift?

 

[nae sporran]

My partner an I live in extra care housing. We applied for it via the local authority housing application process, but emphasised it was only supported housing we were interested in. We did get help from a charity local to Bristol, but AgeUK are good at helping point you in the right direction for form filling and applications. It took about a year and 3 months from submitting the forms to moving in, but I don't know how typical that is.
The upside is that if I go away for a couple of days then it is easy to increase the care hours provided so long as you give them a couple of weeks notice. Of course having a pull cord and someone around to respond to that fairly quickly does give peace of mind.
The down side is that if Pauline ever does need to go into a care home then social services are reluctant to sanction it as she will already have been in the care system. That was what they told me back in April, though a couple of neighbours have moved into care homes when things got much more serious.
I hope any of that is useful to that, Agzy.

 

[Gillywilly]

Hi there I can understand your situation but it is important to choose a home now if that’s what you are planning when Pauline’s condition deteriorated. In Scotland we are lucky because if someone is living in the home then they cannot sell the property for fees. I really feel for you that Pauline wants to go live in an assisted living flat. Is she totally adamant about it our can you talk her round I understand how stubborn they can be best of luck.

 

[jugglingmum]

My mum is in an extra care flat, and and it was the perfect solution for her when she moved in. I think that sheltered extra care/assisted living is a very good solution for PWD - with 2 big caveats - they need to move in before they are too far along and certain dementia behaviours won't be tolerated (wandering and disruption).

I have had involvement in the social housing sector across merseyside and the wider NW and there are a few housing associations who have pushed this as a sensible half way step to a care home, because they believe it gives a better quality of life for the PWD then their own home or a care home, so was aware of them when mum had her crisis, and looked into them.

Some councils have been more willing to engage in the idea than others so the council area I live in has a lot, but not all do.

I have a friend whose parents moved into one in Chester, and they had been in and out of hospital for months, and were on the verge of a care home, and it gave them a better quality of life and retained their independence (her mum probably had dementia, her dad didn't and he gained massively from the social life when he had been stuck in his isolated council house in a tiny village). It also took the load off my friend who was at breaking point trying to keep them in their own home when they didn't want a care home.

I think many people consider remaining in your own home for as long as possible is the best option, but personally I don't from what I know and have seen.

I personally think this is a good step to take, and maybe both of you could live in the flat like Nae Sporran does.

Mum was still capable of sorting out her own breakfast and making cups of tea and very basic cooking (she poached an egg on a Saturday) but not much more and the on site restaurant meant she was eating properly. I don't think she would have accepted carers into her own home (long story but it wasn't an option - due to decades of hoarding and neglect) and whilst she accepted the carers coming in it took a lot of time and they slowly won her round to clean her flat for example. She still won't shower for them 5 years on.

One of the big advantages is that whilst the care visits work the same as if you are in your own home, 15 mins or half an hour, the care team are on site and so rarely late, don't have travel time so with my mum they spend the remainder of the call chatting to her. It also means they have got to know her as there has been a low staff turnover and it is the same team.

With hindsight my mum had been very anxious and confused when she was at home in her house (she lived 200 miles from me and I only saw her when she drove up here) and once settled this was alleviated as she knew she was in a nice safe area and her quality of life improved and she had a good few years of being very happy. She has declined now and doesn't take advantage of the social side now, but is very happy in her little flat, and the regular carers.

Edited to add - if you found out what is available in your council area, you could look at them and find out how to apply.

My mum is self funding so bought a shared ownership flat, the rented flats in her complex are via SS I think but she still needed an SS assessment to be allowed to move in.

 

[Agzy]

Wow, thank you all for such detailed and helpful advice which I will give real consideration to and, if ok, will try to reply to each reply as each is different, thanks again.

 

[Spamar]

Bear in mind, agzy, that a Care home reflects its manager. If the manager changes, the home can go from good to awful.
So if you’re choosing now, you need to check at moving-in time.

 

[northumbrian_k]

Hi Agzy, I went through a bit of this with my wife. She often said that she would prefer to move into a flat of her own. This was not because she recognised her dementia but to 'free' me to find someone else and have children (none of which was what I wanted).

For her it would have been financially unsound and also impractical as she was beyond the point of doing much for herself. Nor was I ready, at that stage, to give up looking after her. When I asked her why she would want to leave our lovely house and live elsewhere, as is the way with dementia, she seemed to think that she could live in both places at once.

Your Pauline may be a lot more capable and less confused than my wife was, but this doesn't mean that what she is saying reflects what she really wants. More importantly, with a view to the future, it may not be what she needs. We muddled on for many months. By the time her needs had grown and I had to hand my wife's care over to others all talk about her going to live in a flat was long past.

It is probably useless to try to talk her out of it but you need to reflect on whether such a move would be in her and your best interests.

 

[Agzy]

Bear in mind, agzy, that a Care home reflects its manager. If the manager changes, the home can go from good to awful.
So if you’re choosing now, you need to check at moving-in time.

A good point I had not considered, thank you.

 

[Agzy]

Hi Agzy, I went through a bit of this with my wife. She often said that she would prefer to move into a flat of her own. This was not because she recognised her dementia but to 'free' me to find someone else and have children (none of which was what I wanted).

For her it would have been financially unsound and also impractical as she was beyond the point of doing much for herself. Nor was I ready, at that stage, to give up looking after her. When I asked her why she would want to leave our lovely house and live elsewhere, as is the way with dementia, she seemed to think that she could live in both places at once.

Your Pauline may be a lot more capable and less confused than my wife was, but this doesn't mean that what she is saying reflects what she really wants. More importantly, with a view to the future, it may not be what she needs. We muddled on for many months. By the time her needs had grown and I had to hand my wife's care over to others all talk about her going to live in a flat was long past.

It is probably useless to try to talk her out of it but you need to reflect on whether such a move would be in her and your best interests.

Thank you for yet more good advice and points to ponder which shows I was right to turn to TP

 

[Agzy]

Hello @Agzy

How long do you think your OH Pauline will be able to live in assisted living, by herself, before she needs more help and support. You know the progression of dementia and what it leads to but does Pauline?

I know I`m going to sound patronising but I can only suggest you humour her, go along with the suggestion and make enquiries. Perhaps you will be able to take as much time as possible doing this.

My husband wanted to move back to Manchester a year or so into his dementia. I put our house up for sale twice, and at the last minute he got cold feet and we had to let people down. It was when I realised he was unable to take responsibility for a decision that I just went along with his suggestions but always used obstacles as delaying tactics.

I remember trailing around car showrooms looking to buy a new car when my husband had stopped driving and wanted to start again. When he saw the prices, even of second hand cars when he had always bought them new, he was overwhelmed by the cost and after a while stopped wanting to look.

Do you know if Pauline has lost insight into her condition? I don`t know her and may be completely wrong but her suggestion seems imappropriate at this stage of her life.

Apologies in advance if my response is intrusive. If the stairs are the biggest problem could you get help to install a stairlift?

Sylvia, I think you have hit the nail on the head in regard to what she wants which is based on her long held love of her independence and belief that all she will need help for is ‘toilet accidents,’ as the mere thought of me or any family member assisting in that mortified her and, as far as he wants, must never happen. She does go on about moving constantly but if I suggest actually viewing the one nearest to us she finds excuses as to why I should just do it all for her. She is well aware of the implications of having Alzheimer’s but as her test score has only changed by 1 point in two years she believes she will be as she is for a very long time even though she accepts things have declined at a faster rate that the so called score shows. I suspect that she is blanking a lot out and just “doesn’t want to be a burden,” to anybody. So much to consider, thank you again.

 

[Agzy]

My partner an I live in extra care housing. We applied for it via the local authority housing application process, but emphasised it was only supported housing we were interested in. We did get help from a charity local to Bristol, but AgeUK are good at helping point you in the right direction for form filling and applications. It took about a year and 3 months from submitting the forms to moving in, but I don't know how typical that is.
The upside is that if I go away for a couple of days then it is easy to increase the care hours provided so long as you give them a couple of weeks notice. Of course having a pull cord and someone around to respond to that fairly quickly does give peace of mind.
The down side is that if Pauline ever does need to go into a care home then social services are reluctant to sanction it as she will already have been in the care system. That was what they told me back in April, though a couple of neighbours have moved into care homes when things got much more serious.
I hope any of that is useful to that, Agzy.

Nae sporran, your situation is the one she says she wants and I will indeed talk to age UK about possibilities even though I am coming to the view that it is probably too late and deep down she may want it for the wrong reasons (me) so again more issues to think about than at first considered, thank you.

 

[Agzy]

My mum is in an extra care flat, and and it was the perfect solution for her when she moved in. I think that sheltered extra care/assisted living is a very good solution for PWD - with 2 big caveats - they need to move in before they are too far along and certain dementia behaviours won't be tolerated (wandering and disruption).

I have had involvement in the social housing sector across merseyside and the wider NW and there are a few housing associations who have pushed this as a sensible half way step to a care home, because they believe it gives a better quality of life for the PWD then their own home or a care home, so was aware of them when mum had her crisis, and looked into them.

Some councils have been more willing to engage in the idea than others so the council area I live in has a lot, but not all do.

I have a friend whose parents moved into one in Chester, and they had been in and out of hospital for months, and were on the verge of a care home, and it gave them a better quality of life and retained their independence (her mum probably had dementia, her dad didn't and he gained massively from the social life when he had been stuck in his isolated council house in a tiny village). It also took the load off my friend who was at breaking point trying to keep them in their own home when they didn't want a care home.

I think many people consider remaining in your own home for as long as possible is the best option, but personally I don't from what I know and have seen.

I personally think this is a good step to take, and maybe both of you could live in the flat like Nae Sporran does.

Mum was still capable of sorting out her own breakfast and making cups of tea and very basic cooking (she poached an egg on a Saturday) but not much more and the on site restaurant meant she was eating properly. I don't think she would have accepted carers into her own home (long story but it wasn't an option - due to decades of hoarding and neglect) and whilst she accepted the carers coming in it took a lot of time and they slowly won her round to clean her flat for example. She still won't shower for them 5 years on.

One of the big advantages is that whilst the care visits work the same as if you are in your own home, 15 mins or half an hour, the care team are on site and so rarely late, don't have travel time so with my mum they spend the remainder of the call chatting to her. It also means they have got to know her as there has been a low staff turnover and it is the same team.

With hindsight my mum had been very anxious and confused when she was at home in her house (she lived 200 miles from me and I only saw her when she drove up here) and once settled this was alleviated as she knew she was in a nice safe area and her quality of life improved and she had a good few years of being very happy. She has declined now and doesn't take advantage of the social side now, but is very happy in her little flat, and the regular carers.

Edited to add - if you found out what is available in your council area, you could look at them and find out how to apply.

My mum is self funding so bought a shared ownership flat, the rented flats in her complex are via SS I think but she still needed an SS assessment to be allowed to move in.

As a solution your replies both make deeper and more details research an imperative and so will do as Nae sporran advises and talk to age UK in the new year as without getting more hands on I dont believe any solution is the perfect one. I really appreciate and value the help of everybody and getting advice for those who gone down the route she talks about is a big bonus, many thanks.