Mum being asked to leave care home

[Ruth32]

Hi All,

My mum has been in a dementia unit in a care home for the past 6 months. They spoke to me yesterday and said due to mum's challenging behaviour they can't care for her anymore. I totally understand as mum is becoming aggressive and she has hurt other residents and from what I can understand that when this happens it gets reported to social services. They said yesterday morning it has been reported 5 times and that is the limit and she needs to move to a specialised one to one care dementia nursing home. She is also refusing to use the toilet and urinating on the floor, chairs and sofas or anywhere she can but refuses to go to the toilet and now also is refusing all personal care. It is just so sad how this horrible disease changes people so much.

I am unsure what to do next. This will be the 3rd time we have had to move her in 7 months. 1st was on Christmas Eve when she lived at home with a live in carer who she hit with her walking stick before trying to climb out her bedroom window. An emergency meeting was called with the doctor and social services and they said she had to go into a temporary home for 2 weeks to assess her. We then moved her from there as it was really quite distressing as it was EMI and a young people mental health home and very loud and she was just drugged and slurring her speech. We moved her 200 miles into a fabulous dementia place 10 minutes from my brother and a lot closer to me and now we have to move her again. I really want this to be the last time as it is not fair on anyone all around.

The question is who will tell me what she actually needs. The new homes we have contacted all say possibly, but they will need to assess her. The old home she has to be moved asap and I don't know exactly what she needs. I am thinking of trying to contact the social services, the dementia team, the behavioural team or the mental health team but don't know which is best to talk to.

If anyone has been through this and has got any advice I would really appreciate it.

Many thanks
Ruth

 

[Grannie G]

I am thinking of trying to contact the social services, the dementia team, the behavioural team or the mental health team but don't know which is best to talk to.

Talk to them all @Ruth32. Let them all know this is too big a problem for you to solve without help. There is no way you should be left to sort this out for yourself.

Your mother is seriously ill and needs the input of the professional services to find the best care for her.

On no account accept responsibility. It is not your role. You are a daughter not a social or medical professional. It makes me so cross when stressed out and devastated family members are expected to do the work of the different disciplines, no matter how overstretched they are

Please contact the Helpline.

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

 

[canary]

Hello @Ruth32

Unfortunately, there are a lot of places that say they specialise in dementia care, when actually, when push comes to shove (so to speak) they dont have much experience. I know that you had a bad experience of an EMI unit, but, really, this is what your mum requires. Not all of them are the same, so please dont discount all of them. Yes they can be a bit loud at times (especially when the residents are all sundowning) and the residents can act in a bizarre and challenging way, but this is what your mum is like too! There are often quiet lounges if your mum finds it too noisy and although drugs may be used to relieve distress they are not usually used as a "chemical cosh". My mum was in an EMI home and I think these homes are more disturbing for the relatives, than the residents though, to be honest - they can take a bit of getting used to.

Contact Social Services and tell them that it is urgent, but unfortunately, if you are self-funded they have a tendency to just leave you to do it yourself. When you look at care homes, dont be taken in by upmarket decor or bells and whistles that look good in brochures for the "discerning relative". I have lost count of the number of posts like yours where the person with dementia was moved to somewhere "fabulous", "wonderful" or "marvelous", only for the person with dementia to be asked to move. Look beyond it all to the actual care provided. The place my mum was in was a bit scruffy and old-fashioned, but had a homely atmosphere and the care was wonderful.

I have been using this link to find a care home for respite for my OH and found it useful

https://www.carehome.co.uk/care_search_results.cfm/searchcountry/UK/searchchtype/challenging-behaviour-psychosis

When you contact a home do speak to the manager and be brutally honest with them about what your mum is like and ask them what behaviour they would not tolerate. There will be a place out there for your mum

 

[update2020]

It sounds to me as if you need to involve the doctor and social services again. The place that they moved her to for assessment may not have seemed pleasant but it may have had the right services in place to assess her. She will presumably be in a different area now - so a different nhs and ss area but probably a similar procedure.

It is hard.

 

[Ruth32]

Thank you all for your replies, they are very much appreciated. I have managed to get the dementia team in for a meeting today to assess her, have spoken to social services who can't really do much as mum is self funding but who were extremely helpful and sent me over a list of homes in the area and said they can assess her if required to find which one would be most suitable for her.

Also spoke to her doctor re medication as mum was prescribed some calming drugs a while ago but the home doesn't use them as they last time they gave her one she fell and broke her hip. She said she would speak to the home yesterday as this is classed as a crisis.

Also on the advice of the home where mum is I have spoken to the district nurse who is coming in next Monday to do a CHC Checklist. Apparently this is the best assessment you can get and will clarify what mum actually needs, this is something I had never heard of and could help with funding as well. The main thing is it will let me know what care she actually requires.

It was a bad day yesterday, mum just seems to be going from bad to worse. She was pulling the district nurses hair while she was changing a leg bandage so my brother who was there held her hands to distract him so she bit him. This is so unlike he. I do wonder whether she might have an UTI but as we wouldn't be able to get a sample of her and in no way take any bloods not sure how this could be checked. Sadly though I do think it is just the dementia.

All noted re EMI units and spoke to my brother and he agreed it will probably be better for her to somewhere which has the full support and care that she needs. We tried to place mum somewhere she would like, but it just hasn't worked.

Thank you all again.

 

[Izzy]

I'm glad that you seem to be getting some assistance now @Ruth32. I wondered if this link about Continuing Health Care would be of any help -

What is NHS continuing healthcare?

NHS continuing healthcare is a package of care arranged and funded solely by the NHS. It is also known as NHS continuing care, NHS CHC and fully-funded NHS care.

www.alzheimers.org.uk

 

[Lynmax]

My mum actually managed to bite her doctor once and regularly spat at her! Luckily her worst behaviour was during personal care or medical examinations so the care home, not EMI but all residents had dementia, managed to cope with mum. They did need more carers to get her dressed etc and tried to use older, more experienced ones as she frightened the younger ones. But as long as mum was clean, they left her alone and did not always manage to get her dressed or showered.

I was worried that they would ask her to leave but they seemed happy enough and were very reluctant to increase her medication as they did not want her heavily sedated. Luckily, although rather rude to the other residents, she did not hit them nor try to leave the building so once out of bed in her chair, the day went reasonably smoothly with meal times carefully managed based on her mood!

Hopefully you will be able to find the right place for your mum as we did, it might take a while but there will be somewhere more suitable.

 

[Jale]

We were told by the hospital social worker that mum would have to go into a home as we would not be able to cope with her needs. Initially care homes were the choice by social services but when mum was assessed by these homes (she was still in hospital) they said they would not be able to offer her the right care, I think 2 or 3 nursing homes eventually agreed they could take her and we did go to look at 2 - she was then moved to one of the nursing homes for more assessment. During that time we spoke to as many visitors as we could to find out their opinion of the home, staff etc and it was partially due to their comments that we decided to keep mum in the home.
There will be a place for your Mum somewhere but you may need help finding it.

 

[Ruth32]

Update. Thanks so much for your replies. They helped a lot.

So we are now a month on from my first post and what a struggle it has been. Mum is still in the same place and the search is still on for the correct place for her. CHC were great and after their initial assessment they went onto a further one but on the day said it wouldn't be wise to do as they would need to another one as soon as mum changed homes. Full of fabulous advice and help though and said I must contact SS again.

SS have proved no use at all. Contacted them again 2 weeks ago just for advice on care homes. I am still waiting for a call back. Have phoned back 3 times and eventually got 3 care home names from them which they thought would suit mum. 2 had no places and 1 only dealt with mild dementia. Apparently I am still on the allocation list for a call back.

Doctor has put mum on Represidrone. Which isn't proving much help. CHC person doesn't think this is great for her as it is a tranquiliser and has suggested a full medication assessment from doctor and possibly taking her off the memantine as he thinks this could be holding her in a bad place regarding anxiety etc.

After much research and many many phone calls, there are 42 homes in mums area, out of these 11 were a possible regarding mums needs, out of these only 2 have agreed to assess her. Which we are waiting on now.

More worryingly, I received a call from her current care home yesterday that said for mums safety and the safety of other residents they are moving her basically into isolation with a carer during the daytime and they will acoustically monitor over night and pop in every 30 minutes. I understand why and it is great she will have someone who can give her the time and attention during the day but worried about the night time and also the lack of interaction that mum will have with others. I live 4 hours away and go to visit mum once or twice a week. But luckily my brother lives nearby and can visit every day. I have a feeling this isn't going to go well and mum will get confused and agitated about the change and no stimulation, but I could well be wrong and she could find it calming.

Fingers crossed we will find somewhere soon.

 

[canary]

It sounds like a nuclear reaction, but if everyone is worried about the safety of the other residents and you cant find a place for your mum you can push for her her to be sectioned.
This would mean that she would move to a unit where she could be properly monitored and her drugs completely overhauled in safety. The unit would then assist in finding somewhere for her.

 

[Jaded'n'faded]

I'm also wondering why no one has suggested she is sectioned. Everyone seems to agree things have reached a crisis so it would be the best thing...

 

[Jessbow]

It sounds like a nuclear reaction, but if everyone is worried about the safety of the other residents and you cant find a place for your mum you can push for her her to be sectioned.
This would mean that she would move to a unit where she could be properly monitored and her drugs completely overhauled in safety. The unit would then assist in finding somewhere for her.

Sounds like a way forward- more geared up to coping with the extreme behviours too.

And , of course, comes funded aftercare- every little help.

 

[Ruth32]

Thanks for the replies. I have eventually got hold of one of the possible care homes today to see what they were doing about assessing mum, they were meant to do it last Friday. They have promised to do it in the morning (not holding my breath) I am heading to visit mum tomorrow and I can chase from there if they haven't arrived.

Re sectioning yes, it has crossed my mind as a last case scenario, not sure whether my brother would agree to this though as we found last Christmas so distressing all around. Not sure which way to do this either, whether it is the doctor, Social Services or Dementia team, although I have received a copy of a letter kindly sent to me by CHC which is written to mums doctor to say they have discharged mum from their services as there is nothing they can help with. I am totally dumbfounded by this because mums dementia will never go away and although they are saying there is nothing they can do, I would have thought that at least she would have stayed on their list. They have said if she needs their services in the future they can re register her.

I think another phone call to the doctor is required. No use contacting the dementia team as they have discharged her and social services are just not interested.

 

[update2020]

The care home can also apply for someone to be sectioned I believe. At least that is what happened with us. With my husband that is not my mil.