Mum in Care home - it’s all going tits up

[SinisterBumFacedCat]

My DM has been in her care home since September. I chose it because it was close to me, looked cosy and there was a reassuring mix of ages (DM is only 67 with Alzheimer’s). It’s a nice enough home as and all the relatives I have met rave about. Unfortunately they are not equipped to handle my Mum. She has deteriorated significantly since moving in and I am rarely able to take her out as she is often too sleepy or says she feels sick after the smallest amount of walking. She has had X-rays and scans and has kidney stones and diverticulitis. She screams every day in the home and has recently started smearing her poo. The home and local mental health team are in a tug of war over whether she needs more medication or more engagement. Care home wants her medication upped, MH are reluctant due to risk of stroke (she has a terminal illness but hey ho) MH team want staff to engage her more in the daily activities. If they do there is no evidence (there are photo albums in the lobby of activities and many Facebook posts, mum is rarely if ever in them and hasn’t been featured for months, in fact it’s the same old faces every time, the well behaved perfect residents with contented dementia, I’m sorry but it was a selling point in the beginning but now it makes me so angry!) Care home now say she needs one to one every evening, MH team said one to one to come in and take her out a couple of times a week (I don’t honestly think she is up to this as MH team have previously always overestimated mums abilities). Anyway a chat with MH team today and she has basically said I need to start looking for a new home because it is a matter of not if but when they give her notice. I don’t know what to do. The care home regularly ring me to complain about Mums behaviour. I have had a carer tell me to come in more to see her (I do 2/3 times a week). They act like I have the magic answer but I don’t. They called tonight with Mum in tears in the background, I spoke to her to calm her down but I couldn’t work out what she was talking about and within seconds of the conversation ending I could hear her crying. On top of everything I’m recovering from Covid which is flooring me in the afternoon and evening and making me exhausted achy and breathless. It’s a longer post than expected to say it’s basically all going tits up. What I want to ask is have any of you gone through this and did you find a forever care home for your non compliant difficult screamy aggressive parent? I’ve seen rumours online of nhs dementia units but I don’t know if Mum is extreme enough for that. Can someone who didn’t have a peaceful perfect parent please give me some reassurances?

I'm so sorry about your mum. What a terrible loss for you and her.

My mum is in a nursing home though she doesn't have dementia. It specialises in dementia care but it cannot accommodate people who have severe dementia. I think you do need to look at whether that home is suitable for her and what they recommend as her disease progresses.

@theresnolimits I think the sticking point is that the care home have asked for 121 and the mental health team say that she needs more engagement (which 121 would give) but the OP has financial POA so they need her agreement for that (unless they get CHC) as she is self funding.

My DGM with Alzheimer’s was kicked out of a care home due to her ‘challenging behaviour’. I don’t know if this is an option for you but we organised 1-2-1 24 hour care at home and this suited her far better.

This is all just so sad. Why are we warehousing all these elderly people, who are just existing in miserable conditions? I really hope there are better options when I am elderly and I can just die peacefully without all this indignity. I would be devastated if my child were left having to cope with this.

Care homes manager called me in after my visit with Mum. They are proposing 12 hours 1-2-1 with mum because they are “loosing clients” due to her screaming. Total monthly cost approximately £12k. Or I find her somewhere else. I have a week to decide. Just want to disappear ☹️

Poor Mum was really calm today, she doesn’t scream with me. I had a nice visit with her and feel like we have both been fucked over. She can’t help her behaviour.

If you don't have health poa why are you being asked to make these decisions. Her social worker, carehome, gp and mh team need to do a full care needs and behaviour assessment then find her somewhere more suitable or apply for chc or fnc funding. It's not up to you to find another care home, if she lacks capacity then the best interest meeting and cop get involved. The will be reluctant to sedate her because of the risks but there are ways of managing this.

I'd take a step back, tell the carehome manager that you do not gave health poa so are unable to help, they can do a capacity assessment and take it from there.

I really feel for you OP, it’s a dreadful situation you find yourself in. The home my relative was in, (who didn’t have dementia) were very strict about behaviour and anyone that became too disruptive for staff and other residents were swiftly moved on. We signed papers when they moved in to that effect, so not unheard of in other homes.

Could you try local social media for recommendations for local dementia specialist homes? Our local town one often has posts looking for similar local knowledge. It sounds like she needs to be somewhere that can cope if sedating medication isn’t going to be an option.

I wonder if a different home would be better? Maybe a specialist dementia care one? MIL was in a care home that wasn't specialist but most of the residents had cognitive issues. But they did not allow people to stay who were very disruptive with their illness. There's a specialist home very close by though and that was the preferred option for families who needed the kind of care and support for their loved ones.
It's very hard. Sounds like better communication is also needed between the professionals looking after your Mum.

I’m frantically googling dementia only care homes and the first one that comes up is the one she is in! (Which isn’t dementia only). All the care homes look similar. I don’t know if she would get CHC for screaming, you would assume yes but it’s impossible for people at the point of dew to get CHC. Care home think because I have financial POA I can ok it. Desperately waiting for mental health team to call me back. Got an appointment to see a home tomorrow but again it’s mixed not dementia only. I’d rather pay no for a competent him than top up one that doesn’t know what it’s doing. When the manager started complaining about loosing clients, oh I mean residents (his words) my confidence in them plummeted.

They sound a bit crap.
My MIL had her moments judging by the monthly reports we got, but the staff were mostly very good with her. I think being uncooperative or upset is something that they should be able to deal with. It must be quite common.

Find a dementia home before she is evicted. They do exist, and her medication will increase. Sadly this disease only gets worse and she seems to have mental health issues with it. They are not usually NHS care homes.

You shouldn't have too much difficulty finding a dementia-only care home, I visited several when I was looking on behalf of my mother, who has been in a dementia care home for several years now.

I found her care home on

https://www.carehome.co.uk/

You can then filter by type of home (select dementia) and region. When you speak to them, describe her behaviours and ask if they are able to meet her needs.

OP, it sounds as though you need nursing rather than residential. The mental health team should be able to advise you on that. You need to make sure you're looking for the right kind of home. Sounds like the one you're already in came up in your search because you're not specifically looking for nursing.

Seconding what the PP has said: sounds as though you need. nursing home as they are much better at coping. We had a relative of mine in a care home which was outwardly very plush (I didn't choose it) but the care was awful. We moved my relative to a nursing home which was much better. We did still need a 1:1 much of the day though as she'd otherwise have kept shouting out for the nurses. It's a horrible disease and a dreadful process.

Make sure you are googling dementia nursing not dementia residential. That is the key having a qualified mental health nurse on site. It will be more expensive but less so than 1:1 in the other place. The MH team should be able to advise you of local DE nursing options.

Like a PP it sounds as if you are getting no support at all in finding an appropriate placement and I don't understand why.

I do feel very lucky but when my mum's care home manager gave notice on her placement due to her disruptive behaviour, it was the social worker who talked to other places about her. Everywhere 'specialist' in the county refused to take her and she went to a super-specialist brain injury unit which was a different world. She was more violent than your mum sounds though.

Bounce it back to them rather than struggle?

I’ve spoken to social services who put me in contact with a care home selection agency who are going to get back to me with homes who accept residents with behavioural problems. The lady said there are homes out there who take people who scream. Also I have been recommended a nursing home by the MH team which is out of this world, looking to bring in more residents, it’s stunning, I’d live there. Probably more expensive but mum should have a bit of luxury. Also this has opened my eyes to her current home, I had to find a carer to help another resident today who was hanging out of her bed, poor lady. It’s been like a full time job over the last few days.

I know this is an old thread but I identify with so much in your post OP. I hope you got sorted in the end.

Thank you. I got Mum moved into the care home, it’s much better, for an extra £k a month it’s worth it. There are fewer residents and more staff, it’s a nursing home, much calmer, no alarms bleeping every 5 seconds, not on the ambulance rat run, the carers are friendly and actually pop in for a chat on my visits. The manager is really approachable. I wish I had known about it a year ago. Fingers crossed Mum can remain there. She has deteriorated a bit and sleeps more although she still has her screaming moments the carers know she won’t go on indefinitely and that she will stop. She doesn’t eat much now and sometimes doesn’t know me, I know people call it a cruel disease but I think that’s an understatement.

Oops missed the update didn't realize it was a zombie thread sorry glad she's ok now OP

That’s great to hear. Again, I can identify. I managed to find an absolutely excellent home for my mum after the first one booted her out when they couldn’t manage her, turned out to be a blessing in disguise after a very stressful few weeks trying to find somewhere that would take her, not helped by social services ringing up to imply we weren’t being honest with anyone about her condition. It’s good to know there are some great care homes out there, it really changed my perspective.

I also didn't realise this was a Zombie at first, but see that OP has updated.
I don't have much to add, but I guess I can relate - my MIL died only yesterday of dementia.
Long story short, she spent her last months in the dementia wing of a nursing home (I hadn't realised there was an important difference between care and nursing home until fairly recently).
The dementia wing was entirely separate from the main home, and completely secure. Residents have the whole range of dementia symptoms - endless pacing, shouting out, crying, confusion, delusion and need lots of nursing care (help to eat, personal care, medication, mobility).

We knew MIL was safe and very well cared for and towards the end that's all you can wish for with this condition.

I wish you and your Mum all the best OP. I took comfort from believing MIL knew I was there on some level, just holding her hand.

This is useful https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool/nhs-continuing-healthcare-decision-support-tool-guidance