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

57 replies

SinisterBumFacedCat · 14/06/2024 18:32

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?

OP posts:
CMOTDibbler · 14/06/2024 19:31

Not my parent, but a colleagues relative had to be moved from the dementia unit she was in (where her sister and BIL were) to a higher needs unit. She had a lot of tweaking of meds, and a period of 24 hr 1:1 but the original place just couldn't meet her needs and keep other residents safe. She's now doing much better in the new place where they are skilled at managing more challenging behaviour

Theoldwrinkley · 14/06/2024 19:27

My elderly aunt was in the same position as your Mum. We looked after her for as long as we could, but it was so so difficult. In the end she went to nesrby care home for 'respite' but never came home. She was too disruptive to the smooth running of the care home and was effectively expelled. Luckily a place came up in a dementia unit where she moved to, but died within a week. Did the move end her life? It is what she wanted.
No real advice for you. I found the local MH team round here worse than useless (probably overstretched). Getting dementia at such a young (relatively) young age is terrible...but I'm sure you don't need me to tell you that. Avail yourself of any and all assistance offeted to you. Good luck.

ByCupidStunt · 14/06/2024 19:07

I'm so sorry for your situation OP it must be terribly stressful for you.

Can you look long and hard for a specialist dementia unit. There aren't really any specific NHS units, there are just units that take in both NHS funded clients and private funded clients.

The home are telling you they can no longer cope.

I predict what will happen is that as soon as she is admitted into hospital for something, likely a fall, the care home will refuse to have her back. And then she'll be languishing in hospital for months whilst you try to find a place, so better to find one now.

I wish I had something more positive to tell you.

JamieFraserSporran · 14/06/2024 18:59

It does sound like your Mum needs to be in a more specialist dementia unit. I do know from personal experience how distressing it is when the person is so young and the difficulties that can pose. As someone else said ask for an urgent review meeting.

Shiveringinthecountry · 14/06/2024 18:55

I'm so sorry you're going through this.

I wish I could tell you something reassuring, but I've had two elderly relatives with dementia in 'homes' and I'm afraid the experience wasn't good. My sibling and I searched high and low for homes that we felt would be kind and competent (we started with a much longer list than that, but ultimately just looked for the most important bare minimum as we learned what the 'homes' were actually like), but to be honest we didn't ever find a place that we were really happy with for either of our relatives.

It's very difficult and demanding looking after people with dementia, and I don't think care homes are really set up to provide the kind of care most of us would want our relatives to receive.

The best way is to find recommendations from people who've actually used the homes, but we found recommendations very hard to get.

I'm sure you know this, but the current home should not be 'complaining' about your mum's behaviour. She isn't well, and none of this is her fault. She can't help it. The staff should understand that. The fact that they would complain, rather than simply inform you, is a sign in itself that you should really try to move your mum.

I wish you the very best of luck in finding a more appropriate home, and in coping with the stress of it all. If there's any chance that you might know families locally who have experience of local 'homes' then you should definitely try to get in touch with them Flowers

babbi · 14/06/2024 18:40

Sorry you’re going through this and that you are feeling unwell yourself .
my mother also has dementia and is in care , it’s very tough.
I would suggest that you get social work involved explaining that you are extremely concerned about your mothers welfare .
They need to conduct an assessment to establish that the care is adequate and appropriate.
Be very persistent and assertive , don’t let them fob you off , they have a duty of care .
Good luck

helpfulperson · 14/06/2024 18:40

Personally I think there is a balance between engagement and medication. My mum struggles to engage with anything for more than about 10 minutes and then needs to snooze for a bit. and gets agitated and shouty/aggressive when she is scared. So she is on a lowish dose of anti anxiety. My dad ended up on a high does of meds because he had no quality of life otherwise due to being so distressed constantly.

But what makes me think you should be looking elsewhere is that in both these cases the care homes tried everything to support, were the experts in dealing with this type of thing. they asked me for suggestions but never expected me to 'solve' it. They also never got in touch to complain about her behaviour. When I was in they might tell me about incidents so I knew how things were going.