Struggling to find a care home

[jojo2018]

Hello, I hope you're doing ok, and wonder if anyone can offer advice or guidance.

My MIL has mutliple cancers and vascular dementia, and has lived alone since her husband passed away 6 years ago. She was diagnosed about 7 months ago but seems to be getting worse rapidly, and it's getting to the point where 2-3 carer visits a day don't seem enough and we have been looking at care homes. She has always said she'd kill herself if she had to live in one, but we are hoping that she will see it differently if we can find the right place.

(Back story - 40 years ago she moved to England from N.Ireland and lost contact with her whole family there - after her husband died all her relatives got back in touch and just recently they visited, causing her to talk a lot about wanting to move back to her childhood home - we are hoping to use the 'move' as a chance to get her into a care home by telling her its temporary while we sell her house, and by the time it's sold she will have settled in).

We are self-funding as she has some savings, and when they run out we will have the money from the house, so we don't have any issues there. However, we are still really struggling to find somewhere and it seems very difficult and complex. In particular:
- many places don't provide en-suite bathrooms (which is essential)
- some places have said we'd need a formal justification for moving her from England to NI to prove it's the right thing to do
- it has been suggested that the best place we've found in terms of location and facilities won't provide her enough stimulation as the other dementia patients are at a later stage (we've not been there to see, but this is what a nurse at the place said)
- it has been questioned whether a care home would be enough given her multiple illnesses and whether she might need a nursing home

We have constantly questionned whether moving her out of her own home is the right thing to do, as she's been there 40 years and loves it - and is fiercely independent. But we live away 8 months a year and she loves her newly rediscovered relatives (who seem very loving and keen to have her back) so now she is asking to move - it's changed things. Also, she is getting worse and worse in terms of short-term memory and confusion; just this week the carers have found her with gloves on her feet, the phone hidden, scissors in her bed, house keys lost, and cross that we hadn't come home on time after she cleaned for us (we'd been away 2 weeks and weren't due back for another week). I know it's a small example but I keep thinking of the day I saw her making yogurt sandwiches, which for some reason was really heartbreaking.

Has anyone been through some / all of these issues when looking for a care home? Any tips or advice would be greatly appreciated.

Thanks, J xxx

 

[VerityH]

We got caught up in the 'ensuite' thing with my dad, but when mum moved in there there were no ensuite rooms and they just gave her a commode for nighttime emergencies which looks like a chair in the daytime. It works for some, not for others. Mum obviously kept forgetting it was there, and wandering the corridors at night looking for a loo anyway, but I thought I'd let you know in case this is an option your MIL might be ok with.

 

[witts1973]

Hello, I hope you're doing ok, and wonder if anyone can offer advice or guidance.

My MIL has mutliple cancers and vascular dementia, and has lived alone since her husband passed away 6 years ago. She was diagnosed about 7 months ago but seems to be getting worse rapidly, and it's getting to the point where 2-3 carer visits a day don't seem enough and we have been looking at care homes. She has always said she'd kill herself if she had to live in one, but we are hoping that she will see it differently if we can find the right place.

(Back story - 40 years ago she moved to England from N.Ireland and lost contact with her whole family there - after her husband died all her relatives got back in touch and just recently they visited, causing her to talk a lot about wanting to move back to her childhood home - we are hoping to use the 'move' as a chance to get her into a care home by telling her its temporary while we sell her house, and by the time it's sold she will have settled in).

We are self-funding as she has some savings, and when they run out we will have the money from the house, so we don't have any issues there. However, we are still really struggling to find somewhere and it seems very difficult and complex. In particular:
- many places don't provide en-suite bathrooms (which is essential)
- some places have said we'd need a formal justification for moving her from England to NI to prove it's the right thing to do
- it has been suggested that the best place we've found in terms of location and facilities won't provide her enough stimulation as the other dementia patients are at a later stage (we've not been there to see, but this is what a nurse at the place said)
- it has been questioned whether a care home would be enough given her multiple illnesses and whether she might need a nursing home

We have constantly questionned whether moving her out of her own home is the right thing to do, as she's been there 40 years and loves it - and is fiercely independent. But we live away 8 months a year and she loves her newly rediscovered relatives (who seem very loving and keen to have her back) so now she is asking to move - it's changed things. Also, she is getting worse and worse in terms of short-term memory and confusion; just this week the carers have found her with gloves on her feet, the phone hidden, scissors in her bed, house keys lost, and cross that we hadn't come home on time after she cleaned for us (we'd been away 2 weeks and weren't due back for another week). I know it's a small example but I keep thinking of the day I saw her making yogurt sandwiches, which for some reason was really heartbreaking.

Has anyone been through some / all of these issues when looking for a care home? Any tips or advice would be greatly appreciated.

Thanks, J xxx

 

[jojo2018]

We got caught up in the 'ensuite' thing with my dad, but when mum moved in there there were no ensuite rooms and they just gave her a commode for nighttime emergencies which looks like a chair in the daytime. It works for some, not for others. Mum obviously kept forgetting it was there, and wandering the corridors at night looking for a loo anyway, but I thought I'd let you know in case this is an option your MIL might be ok with.

Thanks for your reply, and yes they did offer a commode, but I was surprised as I just assumed they would all be en-suite! I guess it's not critical I just really hope that's something we can find. I think she will accept it more if it has en-suite as it will feel more private. Every little thing will count as she is so very against the idea!!

 

[Grannie G]

This might help @jojo2018

https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-care-home

 

[jojo2018]

This might help @jojo2018

https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-care-home

Thanks x

 

[AliceA]

We have looked at a home because they run a day centre. It is purpose built but 15 to 16 years old. They only have a commode in the bedroom, there is a washbasin. The place did not smell just lunch smells we went at 2.00

 

[Grannie G]

En-suite facilities may be important initially but because this is a progressive illness, it will become unnecessary.

 

[AliceA]

I looked at the link you advised on choosing a care home. It is very useful.
I could tick most of the boxes, well all really!
I would feel more comfortable if it were in the same county because of future funding issues.

Like many homes they require a self finder to prove funds for two years before admitting. The only way I could do this is to sell the modest bungalow and move in myself.
We are not at that stage yet while I can manage at home.
I will go for the day care to help us do this.

I would not want to burn my own boat to soon!!!

 

[VerityH]

We have looked at a home because they run a day centre. It is purpose built but 15 to 16 years old. They only have a commode in the bedroom, there is a washbasin. The place did not smell just lunch smells we went at 2.00

We were looking for somewhere that didn't smell. When we moved mum in, it turns out she is the one who makes her room smell of wee all the time! Oh dear …..

 

[Toony Oony]

Hi @VerityH - just think yourself lucky it only smells of wee ........

I do get the need for an en suite - it was an essential for my Mum. However, 18 months down the line, not so much now.

X

 

[Sirena]

My mother's care home provides rooms both with and without ensuite. I looked at both but got her a room without as it costs less and I didn't think she needed it. She has a sink in her room and there are multiple bathrooms on her floor. At night they provide a night commode, and she has an alert mat by the bed so a carer can check if she needs assistance (she's at risk of falls). She's been there since February and I'm glad I didn't pay for an ensuite, she's very happy and it all works fine. You do have to adjust your way of thinking - we'd all want an ensuite ourselves of course, but for our PWD it may be completely unnecessary.

Re the home which someone said won't provide enough stimulation, wait until you've seen it yourself until you cross it off the list. You can never tell until you visit.

 

[jojo2018]

My mother's care home provides rooms both with and without ensuite. I looked at both but got her a room without as it costs less and I didn't think she needed it. She has a sink in her room and there are multiple bathrooms on her floor. At night they provide a night commode, and she has an alert mat by the bed so a carer can check if she needs assistance (she's at risk of falls). She's been there since February and I'm glad I didn't pay for an ensuite, she's very happy and it all works fine. You do have to adjust your way of thinking - we'd all want an ensuite ourselves of course, but for our PWD it may be completely unnecessary.

Re the home which someone said won't provide enough stimulation, wait until you've seen it yourself until you cross it off the list. You can never tell until you visit.

Thanks for the advice!

 

[jojo2018]

Thanks for all the advice so far - I have another question I'm afraid! Our relatives have found a very nice place, with a room free and everything we were looking for. But they need a lot of paperwork from the Drs and the application form we've looked at says there is a 4-week period where they can change their minds about accepting her... As she doesn't actually think she needs any help and is absolutely going to fight us about going there - is this something that would cause them to not want her there? Do many people settle down within 4 weeks and is that why it's there?

 

[AliceA]

We were looking for somewhere that didn't smell. When we moved mum in, it turns out she is the one who makes her room smell of wee all the time! Oh dear …..

The irony of it! Yes, we try then it back fires. Someone is laughing at us, methinks!

 

[FRED24]

my husband was told he had Alzheimer's in 2013 I noted it 2yrs before we have been married 57 yrs have 3 daughters we have always been together even worked together I am finding it very hard and at this time feel very guilty as times gone by he has got worse at home he saw his mother in our house we live bye the sea and he thought his farther lived on the beach at time he did not know who I was he would ask were his wife was I often had to ring 111 they use to tell me to ring the police because he got violent to cut the story short he ended up in hospital with very bad infection urine and gout in his ankle and could not walk his age 81 my age is 76[previous to this he had a head scan 2 months ago and we were told he has mix dementia]he was in hospital 4 wks. then they said he would be discharged him I said I could not have him home unless he could walk and be well enough as he has not been eating and has lost1stone 41b when he sees food he gags and says he cannot eat it makes him feel sick to see food felt I could not cope other problems as well as the dementia they suggested respite 4weeks in this time his dementia has got really bad the worry I have is he recognises me and cry's to take him home it brakes my heart to see him this way the doctor before I came home says his worse time is the twilight time he says he had seen his self that hubby could be violent at home his bad time use to start from 2 pm onwards it helped me a lot having the right meds to calm him he is in a very nice home care place now for 4 weeks when I see him he knows who I am and just says take me home I think and have been told I should not see him every day so he can settle in I see him getting frustrated be for others do and when he wants meds to calm him I was tempted to take him home and my friends and daughter say s it would do me harm just feel as though I should take care of him it is nice to know I am only 15 mins walk from him but I can see he may have to stay because a bit of him keeps going everyday and I don't know what to do for the best inwardly I think I do but hate thinking this way does any one have a comment that could help me

 

[Shedrech]

hi @FRED24
you have stood by your husband throughout and done all you are able to for him, and will always be there for him - it's just that now he needs to be somewhere there is a team of folk to provide the physical care he requires and keep you both safe, and you need their support to keep caring for him as his wife, the one he can ask to take him home because deep down he grasps that you are 'home' for him - but it's not a physical place he is asking to go, it's that safe place and time and feeling without dementia in his world and sadly none of us can go back there; how we wish we could
it takes time to come to terms with this new way of living and find a routine that works so try a day's break from visiting and see how you go - be gentle with yourself

 

[FRED24]

hi @FRED24
you have stood by your husband throughout and done all you are able to for him, and will always be there for him - it's just that now he needs to be somewhere there is a team of folk to provide the physical care he requires and keep you both safe, and you need their support to keep caring for him as his wife, the one he can ask to take him home because deep down he grasps that you are 'home' for him - but it's not a physical place he is asking to go, it's that safe place and time and feeling without dementia in his world and sadly none of us can go back there; how we wish we could
it takes time to come to terms with this new way of living and find a routine that works so try a day's break from visiting and see how you go - be gentle with yourself

Thank you for your reply I have found a nice home but after his 4 weeks stay if he still wants to come home what would many people do my daughter, friends say let him stay I would feel better if he didn't know who I was I feel as though I am letting him down

 

[Shedrech]

hi again @FRED24
personally, I think you need to listen to your daughter especially, and your friends - your daughter will want the best for both her parents and be looking out for your welfare and health as well as her father's - she sounds to be concerned about how much having your husband home will affect you and worried about what will happen to both of you if you hit carer breakdown
what, for instance, will happen should you have him home and he is still asking you to take him home .... it's most likely that won't change
it's important that you think of your own needs and life equally - I can only imagine how it feels to be at home without your husband but even if he is in the house you will still be missing your husband of old
you aren't letting him down, you are making sure he is safe and looked after and he would want to know that you are also taking care of yourself because he no longer can

 

[Rosettastone57]

Thanks for all the advice so far - I have another question I'm afraid! Our relatives have found a very nice place, with a room free and everything we were looking for. But they need a lot of paperwork from the Drs and the application form we've looked at says there is a 4-week period where they can change their minds about accepting her... As she doesn't actually think she needs any help and is absolutely going to fight us about going there - is this something that would cause them to not want her there? Do many people settle down within 4 weeks and is that why it's there?

My MIL never really settled in her home and I would think 4 weeks is probably a bit optimistic. I'm not sure about the contract you're describing perhaps others will be able to give better advice soon . My MIL never thought there was anything wrong with her either but as she went into her home straight from hospital we didn't have the huge resistance we were expecting. We just told her it was a convalescent home to recover fully