Should I change care homes?

[AnitaD]

My aunt is 72 and has Vascular Dementia, Alzheimer’s and also within her brain a calcified meningioma. Last October SS admitted her into emergency care at and carried out assessments. It was decided that she needed residential care. The care home which she was in was terrible and she was not happy to be there. We found a superb home and after weeks of fighting with the LA it was agreed that she could move in.

Has been there six weeks and I am wondering if I have made the right decision. She will not leave her bedroom as she is convinced that there are people who will kill her, she has hallucinations all the time, will not eat and is clearly very distressed and frightened. Care staff has told me that she has said she would rather be dead and wants to kill herself. She has had two occurrences of UTI in the last weeks and it back on antibiotics. Her only other medication is for high blood pressure,

Social worker did 6 weeks review yesterday and feels that is could distress her more if we moved her to another home. This home is very large and modern with super staff and facilities but as she lived alone for 40 years I am wondering if it is too much for her and somewhere smaller would be better. Although after looking initially this one stood out as been one of the best.

As I said the SW and the care home and want to wait a couple of months to see how things go. My husband suggests the same. All I want to do is find a place for her to be happy and content. I feel so guilty and feel that I chose the home because I liked it (although my aunt did spend a day there before been placed and said she liked it) and maybe I should have been thinking more about how she would feel living there.
What would be the worst that could happen if I wait and see how things go, or do I start looking for a more suitable place and who’s to say that this would suit more when it could make things worse. God this is hell.

In the space of a few months she has gone from a lady with dementia but still had a sense of humour and was happy to a sad, frightened, angry lady.

 

[florence43]

Hi Anita,

Yes, my instincts say the same. I think (and there's no science to this) that I would leave her there, although it will bring a few weeks of worry and heartache. My gut tells me she will have the same behaviour, wherever she is. Some believe the same things you've listed even when they're in their own house, so sadly, it is often the disease not the environment that does this.

I think the UTIs are very relevant and they can have some very disturbing affects on a dementia sufferer. It may be that once they have cleared for good (and this can take a little time), you will see a vast difference, and your "old Aunt" may well be back, sense of humour an all... This is not uncommon (though I'd hate to give you false hope).

In every move, there is a period of adapting. Think of a house move for the average, healthy person. It can be very unsettling and can really put things out of kilter... For a dementia sufferer, it's a whole lot worse, so the settling period can sometimes take time. This and the UTIs sound to me like an unfortunate mix, both coming so close together. Once your aunt builds up relationships and trust with the staff (who sound lovely), you may well see a very different lady again.

It's always such a worry. Do I leave her there, do I move her? But I would say a good starting point is gut feeling...based on the home. If it appears to tick all or most of the boxes...give it a chance, but watch, and monitor things closely. That will give you an element of control over the situation. Make them aware of your concerns and ask how they intend to deal with them. The biggest risk with moving her at this stage is a possible further downturn. Let her settle, let the antibiotics work, and see how it goes. I do believe her fears and feelings are possibly due to the UTIs and the illness in general. A sad and heart-breaking part of dementia.

And finally, maybe allow her to spend time on her own in her room. My mum was always very private and would feel terribly shy in social situations. That was her without dementia, so I felt she would feel the same in the nursing home. I could understand why she liked to watch tv, alone, in her room. It's what she would have done at home, only it was a living room and not a bedroom, but at least she could watch her choice of programmes, and did not have to engage with anyone. She was content then, and so I believed she would be content with that principle in the NH too.

Maybe the staff just need to find a balance between privacy, peace and quiet versus vital stimulation and companionship.

Sorry! That was a long reply!

 

[nitram]

Agree that if the staff are good leave her where she is.

Unfortunately dementia is a unpredictable and progressive disease.

Try thinking that she is where she is because of how she is,not that she is how she is because of where she is.

 

[Tana]

I agree with Florence that the uTI's will have affected her and her confusion. Ask the staff to make sure she is drinking plenty of water and check it is within her reach when you go.

My Aunt behaved the same way when we placed her in a home. Our priorities for the Home were that it was clean (no urine smells), the staff were trained and spoke English and the food was good meeting her requirements. I took her a small TV and her cassette player and she did spend a lot of time in her room. She had lived alone and that was how she preferred it. She went on a few day trips and twice was in the lounge when I visited. She made friends with the lady in the next room who used to go in and sit with her.

My Mum still lives in her own house, but asks are they away on holiday and where is her house. Unfortunately it seems to be another phase of the illness.

So long as you are happy with care standards, I would leave your Aunt where she is.

 

[piedwarbler]

I think you have to look at the home carefully, and the staff. I don't want to frighten you. My mum was in a home where she told me that one carer was waiting to attack her. This carer did want to exert her will over Mum, she was not compassionate at all. I had lots of run ins with her, and in the end I moved Mum. I don't regret moving her. Yes, it upset her to be moved, and yes, she slid downhill for a couple of weeks. But I had to weigh up what the benefits were. She is in a good home now with no bullying staff.

As I say I don't want to frighten you, it may be that there is nothing in what your aunt says. But sometimes there is a kernel of truth and as long as you are content that there isn't, then you can leave her there with a clear mind.

 

[AnitaD]

Thank you all for your reply's. It's the first time I have used this forum so apolgies if I reply incorrectly. We'll see in a minute or two. Have decided to give it some more time and see if she settles better once the infection has cleared. Also going to suggest that she see's the doctor as it may be time to try some medication. She was prescribed Aricept last year but reacted badly. Got to have hope that thinks may improve and she is more settled.

 

[piedwarbler]

I think that is the right decision you have made there to give it time Anita. You would have a feeling, an instinct, I believe, if things weren't right. In my case the proof came when we overheard a conversation while Mum was on the phone to me. It was one carer she kept on about - not a generalised paranoia.
I hope I didn't frighten you. It is always wise to be vigilant to what your loved one says, as Mum's doctor told me.
I know it's probably rare that there is any truth to it as well, and I think that's the worrying thing about this paranoia, because it makes relatives so worried and fearful. I remember being traumatised by Mum's worries.
I really hope your aunt settles. Very kind regards,

 

[Clarey]

Hi Anita,

Other people have said that staying put might well be the best decision and if the care staff are telling you your aunt is feeling bad you could see it as a good sign about the level of care, concern and openness.

Have you or they thought about asking your Aunt's GP to consider an antidepressant to help her mood? My partner's Mum who has vascular dementia has been helped by Citalopram which was first prescribed at a point when she was getting very upset and agitated (she also has a lot of other medication for other things).

I hope things settle down soon,

Best wishes,

Clarey

 

[Clarey]

Aha - I see you are thinking about medication from a later reply! DPs Mum also benefits from regular painkillers and there was some recent research about paracetamol helping people with dementia, perhaps because if you can't explain that you've got a headache or a pulled muscle or whatever you're bound to be upset and grumpy.

 

[diablo]

I got Social Services to find a home for mum when they insisted she go into one last February. Then I was recommended a better one which I moved her to ten days later - and is still there. The newer home seems to have a mix of dementia and some others who are quite lucid.

I looked for even better ones after that and found a couple which initially seemed better, but it seemed to me that all the residents were slightly better than my mum was at the time. So I assume that once they get to a certain stage they get thrown out to nursing care. So that put me off, plus everyone said that if I moved her she'd get worse.

She has gone down a bit over the 11 months anyway but maybe that would have been worse if I'd moved her.

I must say that in the two homes she has been in the staff have been really excellent, friendly and caring - or at least when I'm around.

So I think I agree with everyone else that it is better to leave her where she is. My mum hated the home from about two weeks after was put there for about a month - she would complain about it for every moment when I took her out. But has become used to it now and seems content.

 

[FifiMo]

Can I strongly suggest that you look into the medication side of things, particularly if she is having hallucinations and paranoia. There are some good medications that can radically improve these things and can make a vast different to the individual. It is bad enough having to cope with the memory impairment side of dementia without hallucinations etc on top of that too. My mother was much like your aunt, now on medication we have a happy content laughing chatty (mostly gibberish though) person. It has been like night and day with her, hence the reason i'm suggesting you at least explore things.

With regards to her leaving her room etc, you might find this is purely related to her not recognising her surroundings and therefore too scared to move around. I wonder if it would perhaps be worthwhile investing say a weekend to see if you could change this. You could perhaps book yourself in for lunch and tea and accompany her to the lounge area. With my mother I told her we were going on a picnic and she was off! My thought for your aunt was that if she had you there then it might help establish that routine with her having the comfort of you being with her to start her off perhaps? If she refuses, then is there another resident that is pretty sociable that you could invite to her room for afternoon tea - someone who she might then be familiar with when she sees them the next day. In the home my mother is in there is a quiet area at the end of where the bedrooms are that is nice to sit in and have a cuppa and maybe this would be a better alternative for your aunt...

Anyway, just a few suggestions and I hope that she settles in too and starts to feel secure and content in her new home. I think sometimes we have these expectations of how great a place will be and have these visions of our relatives having a lovely time and everything being great. More often as not, even in the best of homes, it is the dementia that is the limiting factor and unfortunately it is not something that we can resolve no matter how hard we try.

Fiona

 

[diablo]

As regards medication for delusions, my mother thought there was some sort of thing beyond the wall to appease at one time, e.g. she fried prawns I got for her to give to it, plus that there was a family living upstairs, so she'd only ever sleep on the settee in the living room.

She was prescribed one anti-psychotic which did nothing, then another which did get rid of the delusions - though she slept for most of the day. After it was stopped she was worse than before by some way - the delusions had gone but she couldn't cope as well with everyday stuff.

These decisions are all very difficult, so you have my sympathy.