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?

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.

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

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

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.

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.

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.

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

This is exactly what has happened to my mum who is 72 with ten years of young onset Alzheimer’s. Care home couldn’t care for her properly as she was mobile and agitated/aggressive almost continuously. She became unwell due to constipation and was admitted to hospital. She ended up being sectioned in October as the ward staff were on their knees trying to care for her in an acute setting and she has been in a mental health unit for the elderly since then.

Frankly it’s the best thing that could have happened and I am reassured that she is now safe and well looked after. The council opened a safeguarding investigation into wilful neglect at the care home but nothing ever came of it. I don’t know whether they will ever manage to find a suitable nursing home placement for her until her mobility reduces and she unfortunately becomes bedbound.

I would contact Social Services OP. They are best placed to assess her and ascertain what she needs, but you need to be assertive and explain that she is likely to be evicted from the care home.

Are you in England and do you have Lasting Power of Attorney for Finances and Health and Welfare?

I think it sounds as though the CH are struggling to meet your mums needs and that she would be better suited in a specialist dementia unit as other posters have suggested before they serve notice. Getting in touch with social work and potentially having a case conference with the CH and the Care home liaison team nurse/medic and SW would be beneficial to get a plan in place.
Calling you to complain about your mums distress and behaviour is not going to achieve anything other than stress for you and doesn’t make me think that they are very well equipped in dealing with stress and distress symptoms.
Is your mum being aggressive? Are they managing her pain? Using the abbey pain scale to determine if she is in pain and unable to verbalise this?
Are the CH using ABC charts to determine triggers? The MH team should have access to a psychologist that can help make a Newcastle formulation to find non pharmacological ways of managing your mums behaviours.
Antipsychotics increase stroke risk but they are sometimes a necessary medication but there are other options available like benzodiazepines, trazodone, SSRIs, Memantine if she is already on Donepezil.
I work in older adult mental health and cover CHs so these are a few things off the top of my head.

OP, if you do start looking around then be careful about recommendations that are given to you by SS or LA sources, if you are not self-funding. Our experience, over many years involving two relatives, was that the LA were happy to try to move our relatives into the first place that was able to offer a bed. Frequently those homes were able to offer a bed simply because the quality of care they offered was low, so they had beds empty. This was particularly the case with our relative who needed to be moved out of hospital. The hospital and LA and SS just wanted to free up her bed in the hospital.

The only people who will actually care about finding a good place for your mum will be you and your family. I realise this probably sounds depressing but it is a realistic picture of how things actually work, and I think it's better to be warned in advance since you've not been through this before.

I am so sorry you are going through this- it is a nightmare. With my Grandad the only solution we found was to have him at his daughters house for his final year with two relatives there at all times - we managed this only because it was lock down. I know this doesn't help you at all, but just sending sympathy and saying I know how hard it is, there is no solution, its pretty awful. I guess you take what you can get and make sure you visit as often as you can, that is all you can do. You are not going to find a perfect solution, there isn't one.

💐

I don't have much experience of a non peaceful parent as my mum with dementia is either peaceful or just anxious but why do the MH team get to make the final call on your mother's medication and not you?

The care home who look after her 24/7 are having issues with her behaviour and their favoured solution is to up her medication. The MH team - who only oversee her and are not actively involved in her care - are vetoing that as she might have a stroke. So the MH team would prefer her to have to move homes with all that disruption rather than risk a stroke? And the onus to find a new place is on you?

Where is her GP in all this? Has he / she passed responsibility for her care to this MH team? I would be working with the current home and pushing the GP / MH team to try the higher medication levels so that she can become more peaceful and possibly stay where she is. Any improvement in her behaviour will make it easier to place her somewhere else if you need to. As you say she's terminally ill with a low quality of life now which will only get worse. If she loses the last year or two of that terminal illness because she has had a stroke, well that could be seen as a blessing. End stage dementia is awful.

My mum was a discontented dementia patient with aggressive, distressed and angry behaviour. Several care homes refused to take her. I respect what they were saying. Better to say we can't cope than not cope.

I'd start looking for a new home and get the MH teams involved if possible. They do sit in an ivory tower of suggestions but not having to deal with things...

Your mum will need more specialist care. Better to find it now

Such a tough thing to experience ☹️

The care home contacted me again today to say she was screaming again today and tried to escape. When mental health lady went in an hour before she was in bed and dozy. CH want one to one 24/7! This isn’t possible really. I don’t know how common 24/7 one to one is but she might as well be at home with 24/7 care. I’m trying to push consultant to increase meds but MH are reluctant due to risk. If it comes back no I will request a best interest meeting. I think the CH have given up and I’m very disillusioned with the whole system. I have financial POA but not health unfortunately. I don’t have any relatives who could share the burden with at home care but she does have brothers. I just wish the consultant would consider giving her enough medication to ease her anxiety, it must be horrible being that anxious all the time!

Hi OP, I'm sorry for the situation you are in.

I'm wondering why you think that one to one 24/7 isn't possible? A number of residents at my relative's care home have one to one. You say she might as well be at home if she has one to one, but I think it's different because at the care home she might need more than one carer to help with personal care for example. In the CH with 121 they will have other carers that can help if needed but the 121 carer stays with that resident the whole time.

Have the care home completed a CHC checklist for her? This may lead to funding for the 121. Hopefully they are keeping very detailed records of incidents - including any safeguarding incidents and incidents where staff have managed to distract her from a potential incident. I think I'm right in saying that if CHC funding is approved, they should assess and provide suitable support package - whether that's in her current CH or if that's not meeting her needs then some other solution.

Hi OP. It sounds like your mum needs to be referred to an appropriate consultant for an assessment in relation to meds. When you speak about the mental health team input it's not clear who you're referring to as wanting to make decisions about medication. Ideally you should speak to your mum's GP and ask for a referral.

Also I agree with PP @JennyWreny that you should look into CHC funding and consider making an application. I can highly recommend a FB page (Continuing Healthcare (CHC)) for up-to-date information and lots of experience in relation to CHC.

As things stand it’s the mental health team talking to the consultant rather than the GP, although they requested blood and urine samples to check if anything else is causing this (sometimes at UTI but not always, she’s had countless rounds of antibiotics regardless of if it’s positive or not).

After years of campaigning for my DF to get CHC, to which he should have been entitled, the last straw was a meeting of 7 people crammed into a tiny office at his care home all explaining why he needed, the woman from CHC took one look at my gnarled, frail and shaking father, who was smashing windows with mugs almost daily and said he would very likely qualify for CHC. Next month I get a letter saying he doesn’t. I have absolutely no faith in them at all, my Dad was in the worst state mentally I have ever seen someone with a progressive neurological disease and it still wasn’t enough. So I can’t really dedicate any of my fight to a lost cause.

I’m reluctant to go straight in with 1 to 1 24/7 because I think it’s too extreme, especially as she is very often asleep. But part of me thinks if she has a one to one in care home she might as well be at home with a one to one. I feel like the care home has just decided she is too difficult for them.

I can't see if you are self funding or not, apologies if ive missed it. But if you don't have health POA I don't know why the care home are contacting you to say this. It sounds harsh but I would just refer them to social work every time.

1 to 1 is perfectly possible. There is a lady in mum's home who has this. The advantage of this being in a care home is that the staff swop frequently so are only dealing with it for half an hour at a time and the lady has lots of changes of face.

She is self funding. The care home doesn’t use their own staff for one-to-one so it would an outside agency coming in.

Your Mum is probably declining rapidly due to the lack of proper care she's getting if they are admitting to not coping with her needs. I had a horrific experience with the care home that my Dad was admitted to after a long hospice stay - he left the hospice with a 6 to 12 month prognosis but died within 4 weeks and I'm entirely convinced it was due to the lack of medical/nursing care.

They are already being obstructive, OP and I would focus solely on getting your Mum out of there as soon as you are able. I worked for many years as a care assistant in a family run extremely good care home, and loved the job - but going into a shit one as a relative was a very sobering and upsetting experience. Sadly too many are run by managers with zero compassion and empathy and it's not about care. If you don't already have one, try and get your Mum a social worker and see if her GP/surgery nurses will come on board as well. You can also go direct to the CQC.

Is it a residential or a nursing care home?

If it's residential then she needs an upgrade to nursing. Having 1:1 is usually prohibitively expensive for private or state funding although care homes love to ask for it it is rarely funded.

I can't see if you are self funding or not, apologies if ive missed it. But if you don't have health POA I don't know why the care home are contacting you to say this. It sounds harsh but I would just refer them to social work every time.

That would be because they are the family, and thank goodness the home isn't thinking they can bypass the family (although the message isn't helpful) because the family doesn't have the right POA. We did have it, but constant attempts were made by homes and LA to bypass us.

OP, it does sound as though the home has decided they can't cope with your mum, and tbh it sounds as though they are right. It's better for that to be recognised so that you can try to find a more appropriate place than for them to just (for instance) shut your mum away in a room and ignore her, as does sometimes happen. That would be even worse.

I hear what you say about the nightmare of trying to get CHC funding - I've been though that too with two relatives. I can only say that it is worth having, and that the people on the FB page I mentioned above have masses of advice and guidance.

We did get 1-to-1 care for one of my relatives for a short period of time, but it didn’t continue as the cost was astronomical.

I think it's usual practice to have agency staff coming in to do 121 care as it's not really a permanent role - the resident may be admitted to hospital for instance and then they would be left overstaffed. However, the agency staff tend to be the same ones each day, so there isn't a problem with them not knowing the resident.

Could you consider having 121 for a trial period - say 4 weeks or similar? You are right, they don't necessarily need to be there 24/7 if your DM reliably sleeps at set times. My relative has 121 care from 7am until midnight which seems to work well. It has made a huge difference for my relative.

I know the CHC funding process can be brutal, but it should be the same outcome if you get involved in the detail or not. Therefore, could you ask for the process to be started. Just decline invites to DST meetings. TBH it sounds like it should have been started already. Here is more information -

A Checklist should usually be triggered in the following circumstances:

• when the individual is going into a care home with nursing and before receiving an NHS Funded Nursing Care (FNC) assessment
• where the individual has significant ongoing care needs
• when an individual’s physical or mental health appears to decline significantly

However, you can also seek a Checklist at any time. Any health and social care professional who has been trained to do so should be able to complete a Checklist, including GPs, social workers, and district nurses.

I hope things improve soon

I can’t see this is your issue to solve. It’s between the CH and the medical professionals isn’t it?

Can you just keep referring them to each other?

I have an aged parent with Altzheimer’s in a CH and I visit often. But they’re the ‘experts’ and I let them suggest the way forward. We’re self funding too and I think that is what we’re paying the big bucks for.

I don’t mean to be dismissive but after 5 years in the CH and 10 years of Altzheimer’s I can’t get too involved as it takes over my life. I also console myself that my parent doesn’t feel or suffer in the same way - they have no retention of difficulties and scream and moan without real awareness if that makes sense.

If I sound haded and exhausted - I am.