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Elderly parents

Moving elderly mother with dementia into care home near us

49 replies

Katymaus · 02/11/2021 18:16

My mother is in her late 80s and has middle stage dementia. She was living alone in London until 6 months ago when she came to stay with us, 150 miles away "for a couple of weeks". When we collected her from her flat it was immediately obvious that she wasn't coping with living on her own and that she had been disguising how bad things had become in our daily phone calls.
Staying with us brought about immediate improvements - she ate well and put on weight, despite frailty her physical fitness improved and she seemed happy and engaged.
However, she cannot stay as a permanent member of our household because I cannot provide the level of care she needs to due work commitments and teenage dc, because it puts a huge strain on our household, marriage and my dd's mental health and because my mother does not want to live in our household - she dislikes the busy-ness, the noise, the tv programmes we (occasionally, not every evening) watch, the food I cook, the noise of musical instruments being practised etc etc. She wants to leave London, to live near us, but not with us.
I have therefore been trying to find advice and ultimately to organise somewhere for her to live nearer here and to arrange care. My problem is that we seem to fall between areas for advice. Her GP in London cannot see her (obviously) because she is not there and they know nothing of the local authority or care-giving agencies in our area; our GP hasn't got her records (also obviously) and cannot do much because she is not a registered patient here. Her local London borough Council will only do a care assessment if we return her to live alone in London, but there is a long waiting list and she shouldn't be living alone (she would be a danger to herself). Our local Council can do nothing because she is not resident here and disuaded me from applying for a care assessment because she owns her flat in London and would therefore be self-funding. Even the Carers' agencies have said they cannot help because we are long-distance - my local Carers' agency say they cannot help because it depends on where the cared-for person is resident, which is London. And my mother's local agency cannot help because she is not physically there.
The obvious thing to do is to take her back to London and leave her in her flat there so that the care system can operate in its usual way, but that is not the best thing for my mother's welfare.
Sorry, a huge first post. I literally don't know where to turn and what to do next. Has anyone else had a similar experience or can anyone else suggest a route through this? Thank you so much

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Katymaus · 02/11/2021 19:25

DreamingOfTheSouthOfFrance - thank you so much for the advice about choosing a home with a specialist unit for someone with dementia - it might not have occured to me. I'm sorry you had to find out through an unhappy experience and so glad you found a better place for your mother.

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Babymamamama · 02/11/2021 19:27

Ah ok I understand your dilemma a bit better. I would imagine that if you have an assessment social care can recommend that she has carers coming in say four times per day. They may offer to arrange that for you but if you are self funding you still pay the full charges so it can be better to just shop around and choose a local care agency you like or is recommended. In my experience social care won’t be concerned about finding your mother the best carers. If she isn’t doing night wandering or is an immediate danger or risk to herself and can be left for periods of time then this might be a good option for her. If she needs round the clock home care you are looking at a live in carer. This is the most luxurious option and can be really nice but will cost way more than a care home place. You also have the overheads still of running the house etc. I’m not sure a social care assessment would recommend a care home at this point. They normally wait till things get worse if you see what I mean. But that doesn’t mean that you as a family can’t decide what is best. If she’s in a care home near you and you visit regularly that might work well?

Purplewithred · 02/11/2021 19:28

Do you have POA?

So if she owns a flat somewhere that can be sold her options to move close to you are either to move into a self-funded care home or for her to move to an ‘extra care’ retirement flat with carers coming in, also self funded.

Start looking at care homes - for someone with dementia and limited funds you will probably want one that offers both residential and nursing care, and that takes both state funded and self-funded residents. So when she runs out of money and/or needs nursing care she doesn’t have to move.

There are organisations who help you find care homes but basically just start trawling round, asking on facebook, visiting, trying the food. You will quickly get a feel for what’s right.

If you can’t sell quickly you might be able to raise a loan on the value of her flat.

Extra Care facilities are an option but there may not be many locally and/or it might not be the right place for her.

Katymaus · 02/11/2021 19:32

@Metallicalover thank you for your detailed replies, I really appreciate it. Re the decision about which type of care, the responses on this thread are making me think that residential care really is the best option. You are absolutely right about elderly people having immediate access to the most basic of things like a cup of tea, the toilet etc. My mother recently had a cold and although she wasn't very unwell, I was able to be there with tissues, drinks, hot water bottles etc when she needed them throughout the day. Thanks for highlighting it for me.

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Katymaus · 02/11/2021 19:40

@Babymamamama I have been thinking that social services won't assess my mother as needing residential care yet - I think that is partly what has been making me hesitate. But of course you are right and their assessments are necessarily stringent and a care home might be best for us all before it becomes absolutely necessary. Thank you

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Katymaus · 02/11/2021 19:43

@Purplewithred thank you - yes, I do have POA. Thank you for the advice about how to choose a care home. I hadn't considered trying the food, but it's a very good idea!

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Katymaus · 02/11/2021 19:45

Really grateful to all the posters who've replied, it's a huge help. One last thing - if anyone has any more tips on what to look for choosing a care home (for someone with dementia in this case), it would be great to know, thank you!

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bilbodog · 02/11/2021 20:10

If you do need an assessment for your mother you can pay to get one done privately so any care home you look at will have a good idea of your mothers needs.

Babymamamama · 02/11/2021 20:22

I think you would need a capacity assessment if your mother doesn’t agree with what you as a family think is best for her. Ie if she refuses care either home based or in a care home. Social care could then assess whether she has capacity to decide about her own care. On that specific topic. If she doesn’t have capacity that’s when the power of attorney comes into play and becomes essential. Sadly I have a lot of first hand experience of this with my own relative.

Dobbyafreeelf · 02/11/2021 20:43

I've been a care worker for over 10 years and my advice would be to look for a good local to you care home who either specialise in dementia or will accommodate her changing needs. In my experience the people who do best and have the easiest ride so to speak, are individuals who are familiar with their environment from as early on as possible. So someone who moves into a care home earlier on in their journey with dementia tend to be more settled. Routine and familiarity are really important.
So I would look for a home who will be able to accommodate her indefinitely. Where she can become settled and familiar with the place before her dementia worsens. I'd then get the ball rolling on selling her London home or renting it out if the rent would provide her sufficient income to cover her care bills.

I wouldn't go for home care because your so far away from her. If you were close by it could work. But in my experience it only works when people are living with or very close by family who are also keeping an eye on them. Even then people often end up being moved into a care home later on which can be more traumatic at that point. Home care really only works for people with full capacity.

Katymaus · 02/11/2021 20:47

@bilbodog thanks, yes I should look into private assessments

@Babymamamama Ah, ok. Yes, I see what you mean. I don't have well-being POA, I wish I did. I'm not sure Mum would be assessed as having capacity to give me POA now. But she does have opinions about where she wants to live. People often talk about choosing a care home for a relative but the Alzheimers Soc say to to include them in the decision as far as they are able. Part of me is hoping that she'll think it's a hotel and that she's going on holiday which would make her happy as she's always loved going on holiday...

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Katymaus · 02/11/2021 20:55

@Dobbyafreeelf Thank you - your opinion as a care professional is hugely helpful. Can I ask you something, which I'm aware will sound ignorant and probably silly, sorry - something which has been bothering me, is whether being in a specialist dementia setting will mean that Mum is less stimulated, and therefore her dementia will worsen more quickly, because she responds well to social interaction with people with full capacity and in a dementia setting the other residents will be in the same position as her. I hope that makes sense

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Dobbyafreeelf · 02/11/2021 21:05

[quote Katymaus]@Dobbyafreeelf Thank you - your opinion as a care professional is hugely helpful. Can I ask you something, which I'm aware will sound ignorant and probably silly, sorry - something which has been bothering me, is whether being in a specialist dementia setting will mean that Mum is less stimulated, and therefore her dementia will worsen more quickly, because she responds well to social interaction with people with full capacity and in a dementia setting the other residents will be in the same position as her. I hope that makes sense[/quote]
No. A good home would hopefully do the reverse and would hopefully provide lots of stimulation which would be beneficial. You can obviously never reverse dementia nor can you slow it or stop it indefinitely but the right environment can be hugely beneficial. Even if it's just providing a level of calm and stability.

GooseberryJam · 02/11/2021 21:05

Hi Katy, my experience may be relevant as I moved my dad into a care home near me in a different area of the country. He had a dementia diagnosis and had been having 4× a day carer visits, but after a number of problems, falls etc I was able to get social services to accept that this was no longer enough to keep him safe. He would be self funding as he lived alone in his own property. I got agreement from social services to fund him for a move into a care home with a charge back agreement (think that's what it's called) where you agree that they will be paid back later from the sale of the house. The social services people who do the financial assessments for care will know about this. If the person has cash savings then those would need to be used first, at least till they have dropped to around £14K, but my dad's savings were not so high so that didn't come into it.

What I did and strongly advise you to do is ask people local to you to recommend care homes. I chose my dad's based on what people I knew said about this, plus then going and seeing it myself. My dad's care home had specialist dementia care and differentiated between early and late stage. It was also a new build which was an advantage as everything was purpose designed, nice wide corridors and rails, no awkwardly shaped rooms that you often get in older buildings.

I had to be pretty pushy to get all this agreed firmly once a place became available at my chosen home - they would hold it for a week or so but then payment needed to start, but I got my Dad's local authority to sign to agree this and then moved him. I agree that residential care is best - sadly, things will only decline from here with dementia, sometimes that can suddenly take quite a dip, and what you don't want is to have to move your mum twice.

How long ago did you get financial POA? That's helpful but I'd also try to get health sorted out if you have any remaining window to do so.

Katymaus · 02/11/2021 21:13

Dobbyafreeelf Yes, put so clearly, what you say makes total sense. Thank you

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Katymaus · 02/11/2021 21:24

@GooseberryJam Thank you for sharing, your experience is absolutely relevant, I really appreciate it. I will find out whether we can still go for well-being POA as soon as possible. I can see that it might really help going forward.
We live in an area where there are a good many care homes but we have only been here a few years so haven't got to know about the care homes just incidentally through family or friends who've had to do with them. I will definitely ask around neighbours and school contacts who have been here longer.

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Dobbyafreeelf · 02/11/2021 21:28

@Katymaus I would go and visit a few homes and ask them what activities they provide. The best homes will have a dedicated activities coordinator or team and there will be things on most days.
I would also look at what the staff turnover is like and how much they are reliant on agency staff. A happy workforce is a happy home in my experience. So I would be looking for a home with a good number of long term staff.

Katymaus · 02/11/2021 21:41

Dobbyafreeelf thank you so much, both of those points sound like really important factors to consider in deciding on a home. The staffing one in particular will be near the top of my list.

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Katymaus · 02/11/2021 21:43

@Dobbyafreeelf Sorry! I've put your name at the top of my last couple of replies to you but forgotten to put in the @ - think I'm feeling the effects of the clocks going back

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FinallyHere · 02/11/2021 21:53

It is never easy for anyone to accept that it is time for them to give up their independence and move into a home.

One way to soften the blow, is to suggest a stay for respite which can give breathing g space while the flat is made ready for a return to independent living or put up for sale.

I understand that many people go into a care home on that basis

As for choosing a home, as PP mentioned, look for one that will accommodate changing needs and be prepared to convert from self funding to funded. And that visitors are welcome at any time of the day, so that you can drop in at different times of the day to we how things are working out.

Your nose may put you off some homes.

Hope you find a good one

AnnieMay55 · 02/11/2021 22:30

Once you actually start looking around the homes you often get a gut feeling if it is right for you. I definitely found the caring staff really made it the right home for my dad. We have several newly built homes in our area with all modern wonderful facilities such as a cinema room. I really think things like that are not very useful for many residents as they lose their concentration span and can't follow many TV programmes after a while. At our home visitors could go in and make themselves and the resident a cup of tea just as you would at home and share lunch with them, free for the visitor. It is also good if there are nice grounds to sit out in or raised flower beds the residents are encouraged to look after. My father was on the ground floor with patio doors he could step out and sit in the sun. Caring staff with lots of activities though is most important. I liked my dad's home as it was small only 22 residents. So in summary , look for most caring friendly home, a home that caters for dementia when it worsens till end of life, and a home that will continue to keep them when self funding runs out if you think this may be needed. It is also useful to check on the Care Quality Comission rating for the home just in case they throw up any failings you ought to know about.

bilbodog · 03/11/2021 09:32

Normally homes specialising in dementia care have tighter security because some patients will wander and may escape - my dad would have walked out as he was physically very mobile so thats another reason for choosing that type of set up.

Katymaus · 03/11/2021 09:49

@FinallyHere Thank you. I asked about respite a while ago only just after Covid restrictions were lifted and the local care homes were either full or not doing respite. The situation may have eased now (or become worse, as Covid numbers are currently high round here).

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WickedWitchOfTheTrent · 03/11/2021 10:02

Speak to social services, we did this with my Mum and they were really helpful

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