Living at home vs care - when should someone move?

[Daughter3975]

Hello everyone. This is quite long, sorry. This is all new to me but I'd really appreciate some advice.
My 80-year-old mother was diagnosed with mixed dementia about six weeks ago. We'd been noticing changes in her for a while but for quite a while we put it down to hearing loss and her refusal to wear hearing aids. We now realise that she struggled to put them in properly and her confused conversation was more about dementia than hearing loss.
Anyway, she lives alone an hour away from us in a charming but impractical cottage (steep stairs, hazardous bathroom) and has fallen out with a lot of her neighbours (another symptom that is easier to see with hindsight) and has wanted to move for a while to be nearer to us. We found a buyer for her house early this year, and had an offer accepted on a lovely flat in a retirement block about 10 mins from us. However it's independent living, and I'm not sure whether that's the right option for mum, so my question is how do you know when someone should move into care, and what kind of care home would be right for them?
Mum's house has been very dirty, she does not like having a cleaner these days (though she did for 30 years previously) and she struggles with tidying up. She recently tripped on some clothes on the floor of her room and fell, breaking some ribs. I go and tidy, clean, do washing etc every weekend but I work full time and have two small kids, so it's a challenge. I think she would probably be ok if someone went in every day, but it's hard to arrange that, knowing she will be moving out soon. She insists she doesn't need it.
Also she often loses things - bank cards seem especially vulnerable - and wanders around with loose bank notes visible in her bag or falling out of her pocket, so I worry that her judgement and awareness of her vulnerability is compromised. It's a miracle she hasn't been locked out of her house yet.
She doesn't seem to be eating properly - she only wants smoothies and sweet things. But she keeps trifle and other perishable food in the cupboard and I worry about food poisoning. She doesn't often wash her hair and I think it's because she struggles in the bathroom. She's increasingly frail and unsteady.
Mum has her heart set on moving to her new flat near us. I don't think she'd like the idea of care at all. Also I'm in a tricky situation, trying to help her with the move without having POA yet (the paperwork has been sent off but it takes some time). So I'm having to prove that she has the capacity to make the decision to sell so the sale can go ahead, but also deeply questioning whether I'm doing the right thing in moving her to a new flat in a fairly unfamiliar area in a city, even if it is nearer me and her grandchildren.
Sorry again for the long post. But I've spoken to mum's GP and the Dementia helpline and so far nobody can really tell me much because, they say, every case is different. So I thought I'd post here in case someone has some experience that might be helpful. I don't want to wait for a disaster to happen to understand what she needs. Thanks so much.

 

[Sarasa]

Hi @Daughter3975. I've recently moved mum straight from her flat where she had no help coming in to a care home. Mum's flat was pretty ideal, modern, near shops etc, but she was struggling to cope. Mum lived two trains and a bus from me and a couple of hours by car from my brother, so we couldn't dash over when there were emergencies.
As others said to me when I was dithering between some sort of sheltered accommodation and care homes, how your mum is now is the best she is going to be, so although she might manage a retirement flat for a few months, soon she is probably going to need more help.
What we've told my mum is that she is in the home temporarily until we can find a suitable flat near my brother, in truth if she does ever move near him it will be to another care home. Maybe look at some homes near you as a respite move and take it from there?

 

[Timebar]

Hi Daughter3975. I might be inclined to speak with the solicitor handling the purchase. The Independent Living company may have clauses relating to people's health. I attended an interview to manage such a place and when I asked was told that they did not always accept take people with dementia, but were okay with physical frailty. (Didn't get the job) It doesn't sound as if your Mum is going to manage without a lot of support going forward. If she were to agree to carers coming it could work. If not then you may in trouble fairly quickly. If she is falling out with neighbours where she is now, the same could happen again. That would be really awful when she's financially committed and looking forward to her new life.

 

[Sirena]

From your description of her symptoms, I'd say it's pretty unlikely it is safe for her to live independently, unless she has help every day. She will deteriorate but there is no knowing how quickly.

I understand your dilemma re having to prove she has capacity - which presumably you have done, as the LPA has done and is being registered.

Would it be feasible to sell her house but get her a flat rental? It gives you options, she has somewhere to live short term but the money isn't tied up and you don't have the hassle of another sale when she needs to move to supported care (of course you would be paying out rent, but I suspect it will be fairly short term).

You're right she will need daily care in her new flat. She will always say no, because as far as she's concerned she's fine - so don't engage in a discussion. My mother was self funding and I had LPA so I arranged carers and told her it was happening. I never called them 'carers' - I just said a nice lady was coming to help her with things like carrying shopping. The carers then did anything she needed - taking her shopping, housework, laundry, making her meals and ensuring she ate them, helping her with personal care like dressing. So if she can afford this, it would be a good option to try.

 

[Rosettastone57]

Hello everyone. This is quite long, sorry. This is all new to me but I'd really appreciate some advice.
My 80-year-old mother was diagnosed with mixed dementia about six weeks ago. We'd been noticing changes in her for a while but for quite a while we put it down to hearing loss and her refusal to wear hearing aids. We now realise that she struggled to put them in properly and her confused conversation was more about dementia than hearing loss.
Anyway, she lives alone an hour away from us in a charming but impractical cottage (steep stairs, hazardous bathroom) and has fallen out with a lot of her neighbours (another symptom that is easier to see with hindsight) and has wanted to move for a while to be nearer to us. We found a buyer for her house early this year, and had an offer accepted on a lovely flat in a retirement block about 10 mins from us. However it's independent living, and I'm not sure whether that's the right option for mum, so my question is how do you know when someone should move into care, and what kind of care home would be right for them?
Mum's house has been very dirty, she does not like having a cleaner these days (though she did for 30 years previously) and she struggles with tidying up. She recently tripped on some clothes on the floor of her room and fell, breaking some ribs. I go and tidy, clean, do washing etc every weekend but I work full time and have two small kids, so it's a challenge. I think she would probably be ok if someone went in every day, but it's hard to arrange that, knowing she will be moving out soon. She insists she doesn't need it.
Also she often loses things - bank cards seem especially vulnerable - and wanders around with loose bank notes visible in her bag or falling out of her pocket, so I worry that her judgement and awareness of her vulnerability is compromised. It's a miracle she hasn't been locked out of her house yet.
She doesn't seem to be eating properly - she only wants smoothies and sweet things. But she keeps trifle and other perishable food in the cupboard and I worry about food poisoning. She doesn't often wash her hair and I think it's because she struggles in the bathroom. She's increasingly frail and unsteady.
Mum has her heart set on moving to her new flat near us. I don't think she'd like the idea of care at all. Also I'm in a tricky situation, trying to help her with the move without having POA yet (the paperwork has been sent off but it takes some time). So I'm having to prove that she has the capacity to make the decision to sell so the sale can go ahead, but also deeply questioning whether I'm doing the right thing in moving her to a new flat in a fairly unfamiliar area in a city, even if it is nearer me and her grandchildren.
Sorry again for the long post. But I've spoken to mum's GP and the Dementia helpline and so far nobody can really tell me much because, they say, every case is different. So I thought I'd post here in case someone has some experience that might be helpful. I don't want to wait for a disaster to happen to understand what she needs. Thanks so much.

Everyone has a different tipping point for going into a care home, if that is what you are thinking. I have no experience of independent living but I can only give you what happened with my mother-in-law who was living on her own with mixed dementia.

My mother-in-law was diagnosed in 2015 she had been living on her own in her own property for many many years we already had power of attorney for finance and health and welfare in place. Similar to your situation, my mother-in-law was in complete denial of her mental health ,as far as she was concerned there was nothing wrong with her and she needed no help

. It quickly became apparent that over a number of years she was slowly losing her mental capacity and became more and more dependent on family and on carer visits 3 times a day. She was self-funding and we simply organised carers to help her whether she liked it or not . Both my husband and I were working full-time and we simply didn't have the time or to be honest the inclination to put ourselves as full-time carers. By last summer she was totally dependent on the carers for food, prompting medication she has refused personal care for over 3 years and in fact her hair had not been washed for 5 years. She was frail and a high falls risk. She became ill in the heatwave last summer and was admitted to hospital with dehydration even with carer visits she simply could not remember to feed herself or get herself a drink. She had a steep cognitive decline and on discharge from hospital it became apparent that she couldn't longer live on her own she could no longer remember where the rooms were in her house the falls continued and she became a danger to herself. Unfortunately incontinence came into the mix at that point and my husband and I made a decision that she would move into full-time residential care.

The tipping point for us was the high falls risk the bowel incontinence and the fact that she was at risk when the carers were not there. It sounds like your mum is going to need increasing help may not be immediately but it will come eventually . It also comes to the point where her needs will become so great they will outweigh what she wants. She might say that she needs no help like my mother-in-law did but you will have to start making important decisions about her welfare and consider her needs above what she wants. It sounds like your mother will be unable to live independently without a great deal of support . It's not an easy decision to make and I wish you well

 

[Daughter3975]

Thank you so much @Rosettastone57.
I have been a bit worried about the effect of heatwaves, if this year is anything like last year. I really appreciate your reply. (This is my first reply too, I hope I'm doing it right!)

Everyone has a different tipping point for going into a care home. I have no experience of independent living but I can only give you what happened with my mother-in-law who was living on her own with mixed dementia.

My mother-in-law was diagnosed in 2015 she had been living on her own in her own property for many many years we already had power of attorney for finance and health and welfare in place. Similar to your situation, my mother-in-law was in complete denial of her mental health ,as far as she was concerned there was nothing wrong with her and she needed no help

. It quickly became apparent that over a number of years she was slowly losing her mental capacity and became more and more dependent on family and on carer visits 3 times a day. She was self-funding and we simply organised carers to help her whether she liked it or not . Both my husband and I were working full-time and we simply didn't have the time or to be honest the inclination to put ourselves as full-time carers. By last summer she was totally dependent on the carers for food, prompting medication she has refused personal care for over 3 years and in fact her hair had not been washed for 5 years. She was frail and a high falls risk. She became ill in the heatwave last summer and was admitted to hospital with dehydration even with carer visits she simply could not remember to feed herself or get herself a drink. She had a steep cognitive decline and on discharge from hospital it became apparent that she couldn't longer live on her own she could no longer remember where the rooms were in her house the falls continued and she became a danger to herself. Unfortunately incontinence came into the mix at that point and my husband and I made a decision that she would move into full-time residential care.

The tipping point for us was the high falls risk the bowel incontinence and the fact that she was at risk when the carers were not there. It sounds like your mum is going to need increasing help may not be immediately but it will come eventually . It also comes to the point where her needs will become so great they will outweigh what she wants. She might say that she needs no help like my mother-in-law did but you will have to start making important decisions about her welfare and consider her needs above what she wants. It sounds like your mother will be unable to live independently without a great deal of support . It's not an easy decision to make and I wish you well

 

[Daughter3975]

Thanks so much @Sirena. I've thought about this but I really don't feel comfortable with the idea of a private flat rental because you never know who'll be next door, or who'll she'd be sharing a hallway with. I think I need to see if there's anything I can do to speed up the LPA. Otherwise she might need to move in with us for a while, but it's not ideal because we have more stairs than she does. I really appreciate your advice though, thanks again for the reply.

From your description of her symptoms, I'd say it's pretty unlikely it is safe for her to live independently, unless she has help every day. She will deteriorate but there is no knowing how quickly.

I understand your dilemma re having to prove she has capacity - which presumably you have done, as the LPA has done and is being registered.

Would it be feasible to sell her house but get her a flat rental? It gives you options, she has somewhere to live short term but the money isn't tied up and you don't have the hassle of another sale when she needs to move to supported care (of course you would be paying out rent, but I suspect it will be fairly short term).

You're right she will need daily care in her new flat. She will always say no, because as far as she's concerned she's fine - so don't engage in a discussion. My mother was self funding and I had LPA so I arranged carers and told her it was happening. I never called them 'carers' - I just said a nice lady was coming to help her with things like carrying shopping. The carers then did anything she needed - taking her shopping, housework, laundry, making her meals and ensuring she ate them, helping her with personal care like dressing. So if she can afford this, it would be a good option to try.

 

[Daughter3975]

Thanks so much @Timebar. I can't tell if she's deteriorating or whether I just see it all more clearly now but I'm inclined to agree. I haven't yet told the new flat's managers about her diagnosis because I guess I suspect that they'll say she can't move there and she'll be heartbroken. The Dementia helpline said that as long as she has mental capacity and wants to live there, I have to go along with it. But I'm increasingly unconvinced about whether it's the best place for her to be. I also hate the idea of her having to move twice in a short period (but then also hate the idea of putting her in a home before it's absolutely necessary). It's so difficult to know what's best.

Hi Daughter3975. I might be inclined to speak with the solicitor handling the purchase. The Independent Living company may have clauses relating to people's health. I attended an interview to manage such a place and when I asked was told that they did not always accept take people with dementia, but were okay with physical frailty. (Didn't get the job) It doesn't sound as if your Mum is going to manage without a lot of support going forward. If she were to agree to carers coming it could work. If not then you may in trouble fairly quickly. If she is falling out with neighbours where she is now, the same could happen again. That would be really awful when she's financially committed and looking forward to her new life.

 

[Daughter3975]

Thanks so much @Sarasa. Your comment about how she is now being the best she is going to be is really helpful. I take it you had POA when you moved your mum? I'm not sure whether I'll be able to move her into a home against her wishes before it comes through, and having just done all the paperwork to prove that she still has enough capacity to decide to sell her house and give POA, we seem to be in a really tricky grey zone. I think the respite idea is probably my best bet for now. Thanks so much for your advice.

Hi @Daughter3975. I've recently moved mum straight from her flat where she had no help coming in to a care home. Mum's flat was pretty ideal, modern, near shops etc, but she was struggling to cope. Mum lived two trains and a bus from me and a couple of hours by car from my brother, so we couldn't dash over when there were emergencies.
As others said to me when I was dithering between some sort of sheltered accommodation and care homes, how your mum is now is the best she is going to be, so although she might manage a retirement flat for a few months, soon she is probably going to need more help.
What we've told my mum is that she is in the home temporarily until we can find a suitable flat near my brother, in truth if she does ever move near him it will be to another care home. Maybe look at some homes near you as a respite move and take it from there?

 

[Daughter3975]

Just wanted to say thanks again everyone. It's so helpful hearing about similar experiences. I really appreciate everyone taking the time to reply.

 

[Ohso]

A thought struck me too, on top of all the brilliant replies already.
It seems to happen that someone gently getting worse can take a massive downturn when faced with major change, moving house is stressful at the best of times so as you see her now might not be how she is after the upheaval.
I would think long and hard about putting her into a situation that she might 'out dementia' within days of moving in.
I would try for respite care and see how that goes if moving in with you longterm isnt viable.