My social worker has asked me to choose between sheltered extra care or a residential home. my mum has deteriorated this summer, is incontinent, reluctant to eat or drink, has very poor short and long term memory and can't socialise without lots of one to one support. She goes through periods of acute anxiety "I can't bear to be in the house, it's like a prison" and can't always tell whether I (daughter) "am real" or has she dreamt about me? She has been found sitting in her front doorway at night, "waiting to be collected" My feeling is that she needs someone around all the time? What are your experiences of sheltered housing with extra care? Thanks.
Sheltered extra care or residential home, how to decide?
- Thread starter Norfolk Cherry
- Start date
I have no experience of sheltered housing but reading your post I would say residential care would be best.
She will have people around her all day and get care when needed. In sheltered housing she will still have times when she is on her own and need to look after herself.
Hopefully someone with some experience of sheltered housing will be along to givecyou some advice.
She will have people around her all day and get care when needed. In sheltered housing she will still have times when she is on her own and need to look after herself.
Hopefully someone with some experience of sheltered housing will be along to givecyou some advice.
My partner and I live in extra care housing. There's two places here and one has carers on site all day and all night while the other only has carers during the day. It works ok for us as we have our own place and a communal lounge, but OH's condition is fairly manageable, if a little stressful for both of us. There was one lady who had to be moved out early this year as she was living alone and had a tendency to wander during the day, while another had to be moved to the better supervised complex as he wandered at night. The kind of one to one support your mum needs is not really available in extra care housing, so may not be suitable.
That's just my experience, and I wish you luck in making a hard decision.
That's just my experience, and I wish you luck in making a hard decision.
My mum is in extra care housing, she goes to the restaurant at lunch time, she goes to some of the activities (bingo and pop music are no nos - as they were pre dementia) and makes her own way to the TV lounge from time to time, but other than the 4 daily 15 min carer visits, she is on her own in her flat.
The care level is set according to need, so my mum is currently banded at 10 hours a week. When she moved in the max was 20 hours a week with no carers on at night. This I think may have changed to more being available and they have night time carers available now.
The setting is perfect for my mum at the stage she is, and far better than trying to manage with carers in her own home, but it is more appropriate for PWD struggling to live independently and gives them the support to retain a feeling of independence.
From your description above, I think residential care sounds more appropriate, as that level of anxiety needs constant reassurance and company.
The care level is set according to need, so my mum is currently banded at 10 hours a week. When she moved in the max was 20 hours a week with no carers on at night. This I think may have changed to more being available and they have night time carers available now.
The setting is perfect for my mum at the stage she is, and far better than trying to manage with carers in her own home, but it is more appropriate for PWD struggling to live independently and gives them the support to retain a feeling of independence.
From your description above, I think residential care sounds more appropriate, as that level of anxiety needs constant reassurance and company.
Thanks all for your replies, yet again I feel heartened by the advice and support on Talking Point.
My husband and I live in Sheltered Housing ( not extra care) My immediate reaction to your query is that Residential Care would provide your Mother with more appropriate and round the clock care. Also with far more Community contact which may help.
Very Best Wishes to you in this anxious time.
Very Best Wishes to you in this anxious time.
From what you have said, your mother would benefit from company and help 24/7 so would be better in a residential care home. In sheltered extra care she may still be seeking that company which could be stressful for her and disruptive for other residents.
I know it is often thought a care home is a 'last resort' - I thought the same myself. But having seen how my mother has thrived in her care home, I have gone from thinking I moved her a bit too early, to thinking I should have done it sooner. For the last six months in her flat she had similar habits to your mother, she had six hours of 1 to 1 care a day but as soon as she was left alone she became very anxious. What she needed was constant company and reassurance from people who understand her illness, and now she has that she's very happy - something I never expected to be able to say.
I know it is often thought a care home is a 'last resort' - I thought the same myself. But having seen how my mother has thrived in her care home, I have gone from thinking I moved her a bit too early, to thinking I should have done it sooner. For the last six months in her flat she had similar habits to your mother, she had six hours of 1 to 1 care a day but as soon as she was left alone she became very anxious. What she needed was constant company and reassurance from people who understand her illness, and now she has that she's very happy - something I never expected to be able to say.
As my brother and I are now in the process of finding a suitable care home for mum (not self-funding) I find your comments very reassuring @Sirena
Mums assisted living with care was suitable at first (she moved in just over a year ago) but now she needs the 1to1 24/7 company and reassurance as she is the one wandering in and out of other peoples flats and, as you say, this is stressful both for the other residents and for mum.
@Norfolk Cherry it sounds as though our mums are at the same stage.
Thanks @Sirena, very reassuring. @elvismad what a worry it is trying to constantly change gear according to the latest development. Since I wrote on here, I visited mum at 10 am, to find her in bed (unusual) and looking terrified. Like she's seen a ghost.She said she'd been ringing lots of people up! She'd been ringing the hospital! I talked her down saying it must have been a bad dream, she didn't know any numbers. I pretended I could see her past calls- no calls to anyone. I said! Calmed her down, left her with the carer. Then got a call from the carer, an ambulance had arrived! They expected a bad incident!!! Aaaaarrgh! I'm clearly not helping her when her sense of what is real /not real is already confused!. TBH does it even matter when by lunchtime she'd forgotten it? I'd love to hear the conversation between her and the paramedics, you practically have to be dying to get an ambulance where I live. On a serious note, it's clinched it for me, her days of independent living are done, I'll find the best home I can, visit and care from a distance and hope it will be as it was for Sirena
From what you say, I'd think a residential home with 24/7 care, i.e.someone always on hand, is needed.
I'd imagine that a move to extra care housing would entail another move very shortly afterwards, since however good the 'extra', it probably wouldnt be enough.,
I'd imagine that a move to extra care housing would entail another move very shortly afterwards, since however good the 'extra', it probably wouldnt be enough.,
@Witzend, I am too at my witzend. Yesterday, after the ambulance call out, I brought mum to mine to have lunch with my daughter and grandchildren. Fine, all happy, took her back. Then at 6pm she turned up having shuffled about a mile with her frame uphill, a walk she hasn't managed to do for about three years. Saying "I just couldn't stay in my house a minute longer!" She was exhausted and trembling, and had had to ask someone where our house was. She could never have got back if we had been out. More cups of tea, back we go. I've taken her for a long shuffle in the park and home this morning, but will phone social worker on Monday to hurry up with care home plan. Have hidden walking frame to prevent further escape. Meanwhile have OH at home post retinal detachment surgery and blind in one eye, not feeling like having mum around, (not that that's anything new) and needing help with everything including walking outside. Am worried whether his eye will recover after reading too many dark posts on the internet. Aaaargh! good to get it down on here as fear friends will disappear if I keep telling it like it is.
It is such a worry when they starting wandering, anything could happen to them. Hope the SW moves quickly re the care home. To counter the dark stories about retinal detachment, my friend had surgery for a detached retina a few years ago and his sight recovered fine, fingers crossed for your husband.
Yes, do tell SS about her escapade getting to your house. She is very much "at risk" doing this and I hope that once SS knows about it they will deal with it all with more urgency.
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