We have a Best Interest meeting tomorrow with the hospital and the multidisciplinary team. Mum got admitted just after Xmas with extreme agitation/anxiety probably caused by UTI and chronic constipation. Things now have settled down and it is time to go home. Mum is desperate to go home but most of the advice we’ve been given is suggesting it may be time for a care home. One option to get her home - where she wants to be - may be companion care/live-in carers and I wondered if anyone could advise on the feasibility of this. The hospital and Alz professions have warned that it is fraught with difficulties e.g. finding a suitablely qualified carer, sorting out cover for when they have time off, covering in emergencies etc. Mum would be self funding and I imagine resistant to having someone in her house initially (sigh). Any advice would be great and also guidance on the practicalities of live-in care. Mum has frontotemporal dementia, her memory and awareness is good but she struggles with cognition.
Live - in - Carer - is it feasible?
- Thread starter Redlib
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Others on this forum have good experience of this I'm sure but the agency my MIL uses has quoted £950 a week . That's without household expenses etc. Very expensive option but it can work
I tried live in carers for dad in moderate stage trying to keep dad in his own home. It does work for some but it didn't for dad. The dementia expertise whilst promised just wasn't there and dad wasn't particularly challenging if they had been experienced in applying understanding and strategies. Dad was a night time pacer and to allow the live in carer to sleep a second waking night carer was needed at a cost of £1600 per week...the reluctant care home decision had to be taken though because of the lack of expertise I found. I am sure though there are cases where it does work but I think it depends greatly on the stage of dementia...compliance of the pwd...and as the dementia progresses sometimes double handed care is needed one carer is not enough. If your mum doesn't like people in the house do you think she would accept in at the deep end as it were
Mum has resisted all forms of organised care. She is coming around to more care in her house as she is so desperate to go home but thinks a couple of hours a week will be enough. She will absolutely loathe being in a care home and will hate us forever. What ever we do will be wrong in her reality.
The lack of carer expertise is worrying as several other people have mentioned it to me.
The lack of carer expertise is worrying as several other people have mentioned it to me.
I think it works for some. I’ve met a few very elderly ladies who have live in carers who seemed very nice. I think while the dementia is fairly mild it would work but I’m not so sure about people who wander or who are aggressive.
I had a friend who used to do live in caring but I dont think any of her people had dementia. They were usually very comfortably off, mobile and just needed company and taking out for a drive. They were often of a great age but needed someone all the time in case they fell down.
I had a friend who used to do live in caring but I dont think any of her people had dementia. They were usually very comfortably off, mobile and just needed company and taking out for a drive. They were often of a great age but needed someone all the time in case they fell down.
If your mum.is still able to think and apply good reasoning to verbalise that a couple of hours of care is enough even if it isn't... . then maybe she is still at an early enough stage where not so much expertise is needed but there may/will come a time when more will be needed
I just thought that I would mention my mum who was desperate to stay at home and tried (with tears) to make me promise that I would never "put her in a home". Unfortunately she would not accept carers at all. She agreed at one stage and I put some in place, but when they came she refused them entry. Eventually I had no option but a care home and, although she fought against it tooth and nail, she settled there and actually thrived! She ate and took her medication there and began to look so much better, her paranoia went, she was clean and dressed, she joined in the activities and made friends. I could not believe it. You never know how they are going to react.
There are a lot of unknowns at the moment. Before Xmas her anxiety was out of control she couldn’t be left alone for five minutes, was up in the night five times and was highly agitated all day long. Later we discovered she had a UTI and chronic constipation. Before this she was quite anxious but still getting the bus into town, staying in her house at night and just about coping but things were beginning to slide. She’s now on diazepam and so her anxiety is much lower but how will she be at home? Will she regain her independence and cope some of the time on her own or will everything collapse again? Since the constipation she has been on anti-constipation meds and we now have problems with continence. - is that a permanent problem now or a side effect of the meds? Will the best Interest meeting assess her needs as higher than they are because they’ve seen her at her worst? Or are they just being realistic and simply just stating the reality of how things are now? Will a live-in carer be overkill or what’s absolutely required now or just delaying the inevitable move to a care home?
I hope you have a good meeting and feel that a good decision has been made, whatever you decide.
This was my experience, in case it is of any use to you. Best wishes. xx
My mother went from living at home on her own with no carers - via a hospital stay - to living in a care home for the last year of her life. I considered a live-in carer but it would have been just as expensive or more so than a care home - and you don't get the shifts to ensure continuous care so that I never had to worry at night how Mum was. Plus the fact that Mum's spare money for a live in carer would have run out and then she would have had to sell her house anyway.
Mum had always said she didn't want to end up in a care home so I told Mum that it was a convalescent home till she got better. At first she was a bit anxious and unsettled. But in the end she was happy, and came back from a hospital stay last June feeling really pleased that she was back in her care home. She said, 'I'm never going on my travels again.'
My grandmother, who died in 1986 at the age of 96, didn't have dementia. She died in hospital having fallen ill in the flat where she lived on her own but visited by my uncle daily. She began to go downhill after an accident at her flat where she got stuck in the bath, and my uncle tried a couple of solutions - a live-in carer provided by an agency who stayed there for a couple of weeks, with occasional weekends in a care home. I visited my gran while the live-in carer was there and she didn't like her much and found the presence of a stranger in her own home rather oppressive. I visited her also when she was in the care home for the weekend - she was enjoying herself, even though she was sharing a room with another lady. When Mum & I left, she quickly got back to the book that she was reading!
So I think Gran would have been happier with a care home too, though it didn't come to that.
This was my experience, in case it is of any use to you. Best wishes. xx
My mother went from living at home on her own with no carers - via a hospital stay - to living in a care home for the last year of her life. I considered a live-in carer but it would have been just as expensive or more so than a care home - and you don't get the shifts to ensure continuous care so that I never had to worry at night how Mum was. Plus the fact that Mum's spare money for a live in carer would have run out and then she would have had to sell her house anyway.
Mum had always said she didn't want to end up in a care home so I told Mum that it was a convalescent home till she got better. At first she was a bit anxious and unsettled. But in the end she was happy, and came back from a hospital stay last June feeling really pleased that she was back in her care home. She said, 'I'm never going on my travels again.'
My grandmother, who died in 1986 at the age of 96, didn't have dementia. She died in hospital having fallen ill in the flat where she lived on her own but visited by my uncle daily. She began to go downhill after an accident at her flat where she got stuck in the bath, and my uncle tried a couple of solutions - a live-in carer provided by an agency who stayed there for a couple of weeks, with occasional weekends in a care home. I visited my gran while the live-in carer was there and she didn't like her much and found the presence of a stranger in her own home rather oppressive. I visited her also when she was in the care home for the weekend - she was enjoying herself, even though she was sharing a room with another lady. When Mum & I left, she quickly got back to the book that she was reading!
So I think Gran would have been happier with a care home too, though it didn't come to that.
Sometimes the answers to what ifs and buts...are only answered by trying something to see if it is manageable or works. Stays in hospitals.. uti's...progression of the illness..pwd change of reaction....all make these things difficult to predict. Agencies quite rightly have a duty of care to their live in carer as well as the pwd...Dad did get agitated but was not physically aggressive...and by nature of the solitary job no matter that they have training with dementia...and in my experience not nearly enough or in depth...a live in carer will have limitations on how much they will or can handle. We as carers who have looked after a loved one 24/7 discover that. I would keep an open mind and just keep a flexible approach to what will be discussed at the meeting but yes from what you describe if your mum is living on her own and can get by her needs do seem to be changing...it is only a matter of time before she needs increased support and that may only be from a care home to meet those needs.
Having live in carers is very common here in Italy. It is partly a forced choice thanks to state and government's lack of interest and national health service lack of funds.
Most care/nursing homes are too expensive for self funding people and their families.
Live in carers are more affordable. The carers are not qualified (just like many of us), but on the whole they work well. Not many Italians, but prevailingly from Eastern Europe or South America.
There are agencies which provide a carer and their substitutes so that assistance is guaranteed 24/7.
It all costs no more than 2,000 euros a month, all insurances and whatever required by law.
Food is not obviously included.
I wonder why live in carers are so expensive in the UK and if you could use foreign agencies.
Most care/nursing homes are too expensive for self funding people and their families.
Live in carers are more affordable. The carers are not qualified (just like many of us), but on the whole they work well. Not many Italians, but prevailingly from Eastern Europe or South America.
There are agencies which provide a carer and their substitutes so that assistance is guaranteed 24/7.
It all costs no more than 2,000 euros a month, all insurances and whatever required by law.
Food is not obviously included.
I wonder why live in carers are so expensive in the UK and if you could use foreign agencies.
We are going for a combination of care choices. To use live in carers from an agency here in Kent..I was quoted nearly £1000 for 48 hours! We have been lucky enough to find someone who is happy to do 41 hours, for minimum wage, and who is qualified to NVQ ll. She starts at 3pm on a Wednesday and finishes at 9.00am on the Friday. She gets a long (2 hour) break on Thursday and is classed as sleeping’ nights. This combined with day care on Wednesday gives me 48 hours a week off from caring. In addition, I get a few hours on a Tuesday, while OH is in day care.
Having seen the difference in OH since he began day care/Cogs, I’m not sure straight home care would have been as beneficial. He is being stimulated by the company and activities. I’m hoping we can increase hours as and when I need more time off/sleep, as and when the time comes.
Having seen the difference in OH since he began day care/Cogs, I’m not sure straight home care would have been as beneficial. He is being stimulated by the company and activities. I’m hoping we can increase hours as and when I need more time off/sleep, as and when the time comes.
Not sure how people manage to pay for 24/7 care and
I think some people tend to forget this. Expensive business, not sure how people pay for 24/7 care in the home.
My neighbours mother has alzheihmers, she fell, forgot how to walk, they said it would have cost 7000 a week for two carers at home so she went in to a home. She was 94 so she was at home a long time. Who can pay fees like that?
I think some people tend to forget this. Expensive business, not sure how people pay for 24/7 care in the home.
My neighbours mother has alzheihmers, she fell, forgot how to walk, they said it would have cost 7000 a week for two carers at home so she went in to a home. She was 94 so she was at home a long time. Who can pay fees like that?
I hope your meeting tomorrow goes well and that you find answers to your question. You say that ‘The hospital and Alz professions have warned that it is fraught with difficulties e.g. finding a suitablely qualified carer, sorting out cover for when they have time off, covering in emergencies etc.’ That really resonates with me and I think they are giving you good advice.
This is what I did two years ago. I arranged live-in care for my 92 yr old father after he fell and broke his hip. He had mild dementia and bladder cancer but until the fall had managed on his own with a bit of help (at my insistence – he was extremely reluctant) from ‘helpers’ who dropped in to check he had taken his pills and had food in the fridge. The live-in care was a team of 2 wonderful carers who took it in turns each to do a 24 hour shift and this has worked well until recently. I take over when they need cover or are on holiday or there’s an emergency, so that means I am ‘on call’.
Over the past six months his dementia and bladder/prostate/bowel issues have become worse, he has been in and out of hospital and caring for him at home has become much more demanding. Our local health service is stretched to the limit and the doctors, nurses and social services are grateful to leave us to it. In addition I’ve had to take over maintaining his house which had been neglected for some years and I am beginning to think that it might be better if he were in a nursing home. That may yet come if his mental and physical health deteriorates much further and the carers come to the limit of their seemingly infinite patience.
This is what I did two years ago. I arranged live-in care for my 92 yr old father after he fell and broke his hip. He had mild dementia and bladder cancer but until the fall had managed on his own with a bit of help (at my insistence – he was extremely reluctant) from ‘helpers’ who dropped in to check he had taken his pills and had food in the fridge. The live-in care was a team of 2 wonderful carers who took it in turns each to do a 24 hour shift and this has worked well until recently. I take over when they need cover or are on holiday or there’s an emergency, so that means I am ‘on call’.
Over the past six months his dementia and bladder/prostate/bowel issues have become worse, he has been in and out of hospital and caring for him at home has become much more demanding. Our local health service is stretched to the limit and the doctors, nurses and social services are grateful to leave us to it. In addition I’ve had to take over maintaining his house which had been neglected for some years and I am beginning to think that it might be better if he were in a nursing home. That may yet come if his mental and physical health deteriorates much further and the carers come to the limit of their seemingly infinite patience.
So we had the Best Interest meeting and are going initially for six weeks rehabilitation/convalescence in a suitable care home and then hopefully a return to mum’s home with lots of support. The doctors are still playing with her anxiety medication and exploring continence/constipation issues. She’ll be referred to the complex needs team and be under the care of a community mental health team too.
