Care home sent her back

[WickerShit]

Mum (78) has Alzheimer's, diagnosed 2018, being cared for at home by my 85 year old step-father. Things have been really awful for a long time.

She is very very bad now crying and distressed a lot of the time, hallucinating, not washing or changing her clothes.

We have been pushing and pushing for them to get help (carers etc) and SF wouldn't have it said Mum would not accept any help from anyone but family. There's a lot more to the history of the last few years as you can imagine.

This month things came to a head with paramedics being called/hospital visits finally people seemed to start to sit up and listen and after a very bumpy ride very emotional and stressful she was found a place in a home which we moved her into. She went in Thurs lunchtime. By 7 pm they had called us and said they couldn't cope and we'd have to take her home. She was verbally and physically aggressive and throwing drinks / food at the walls.

Back home she is now calmer than that but back to crying and moaning and wandering round unable to settle. And still in the same clothes, hadn't washed for weeks,

When they called SF yesterday afternoon and asked how things are he said 'fine' . Someone called us yesterday and said if he continues to say 'fine' the authorities will move on and no more help will be offered.

Me and my step-sister have PoA. Just wondering what the next step is. So sad as I really thought on Thursday we'd finally moved on to the next albeit upsetting phase but no back to the nightmare again.

Come and join us on this thread, OP. You'll find plenty of people in your situation, and lots of support.

https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

I'd be selective in what you print out! You need Social Services on your side, whatever you may think of them in private.

What we have been looking for is something that makes us happy, less guilty about leaving her. Focus on the fact that she now needs more care than you can provide. What helped me re my father is that the nursing home was able to get him to take his medications on time, and feed him properly, which was something I hadn't been able to do, so I didn't feel guilty. The key thing in a nursing home I believe is the staff rather than the facilities, by which I mean a home with dedicated staff and a good hands-on manager but poor facilities is better than a home with great facilities but disenchanted staff, high turnover, and no personal relationship with residents.

Write up your notes from this thread, and email sw'er now so there's a paper trail. Why wait? Ask for all the things you want, list them eg: her nursing needs, FNC, review of medication eg lorazepam. Put in a few key words so that the sw knows you mean business and are not to be messed with. Ask for an urgent review, with a view for her to be placed asap. And ask for a phone call asap, eg Monday or Tuesday to discuss. Don't let them off the hook, keep pressurising them, keep the deadlines tight. Fight hard, but polite.

Quite often the homes that look the most appealing are the ones that are spending less money on staff. All the behaviour you describe is fairly common in a person with dementia, who becomes disoriented and distressed. For lots of homes, it's routine and they have ways to manage. (Not sedation, usually. That comes with its own set of risks)

I have seen care homes turn people away like this one did, but usually the person is sent back to hospital until a suitable place is available. Going back home to be cared for by an elderly spouse, round the clock, is not ideal.

I would make a list of her care needs
.
Can she shop, cook, clean, make tea. Has she lost weight
Can she wash, change clothes, keep herself clean, does she use the toilet
Does she have any wounds, skin conditions, medical issues
Can she walk independently and safely
Is she at risk of falling, does she wander
Is she at risk of self neglect or risk like leaving gas on, refusal by sd to get the care she needs
Can she manage finances
These are questions ss and a carehome should ask. Have you got a copy of her assessments, what do they mean by complex needs, are they nursing needs or behaviour needs. Does she have any insight into her anxiety, hallucinations , aggression and pacing around
Does she have nursing needs that only a qualified nurse can give, if so you get fnc.
With funding, has she had a financial assessment, would she need to pay for care, do they claim attendance and carers allowance.
Has she had a formal capacity assessment, does she have capacity to move to a carehome.

If she doesn't have capacity and needs a carehome, emi unit, hospital or home carers will there be a best interest/nearest relative meeting and who will arrange this and make the decisions .

My lovely dad was briefly in a care home before passing away. It was a lovely care home built in a, circular way so the residents could walk freely supervised if nerve. It had a pleasant lounge that they could use. Rooms were definitely NOT locked and restraints were absolutely NOT used. You just need to find the right care home.

My friend is dealing with this situation with her father. He is fit and well, but dementia is quite bad, he cannot be left alone. He went into a dementia care home whilst friend was on holiday. A couple of days in they got a call to say she had to collect him as he was violent to another resident. It turns out a male resident kept going in his room and despite asking him to go, he kept going in, so friends Dad pushed him over. He now seems to have being violent on his file as when another care home was approached to take him full time, apparently there is no spaces available.

Is your step father prepared to continue caring for your mum at home? If he says he is, you may find that social services try to maintain that, unless there are serious safeguarding concerns. From what you have said about mums behaviour in the care home, the staff will absolutely not have been able to meet her needs. EMI nursing care would be more appropriate. Sending her to A and E would not be beneficial to her, if it can be avoided. She would remain in hospital for a long period of time whilst they gather all the evidence they require, various nursing homes assess her and there is usually a waiting list. It could even mean a placement out of area. Meanwhile, mum is in a hospital bed for months, with all the risks that entails. I would speak to her social worker in the first instance.

OP@WickerShit please make sure your mum has had a full physical check up by a medic….there are lots of physical causes of increased distress..UTIs, chest infection, constipation, dehydration can all be frequent issues and I have seen a lot of elderly people with dementia whose physical care has been sub par and the aggression put down to worsening of dementia ,rather than a treatable cause.

Another thing to do would be to speak to her gp for a review- are her medications optimised?

She's a failed discharge. She was discharged into the wrong setting; who ever assessed her has not highlighted her needs correctly/was given false information by family.

Idea one is that she stays with you for 3 months, and then your sister for another 3 months. Giving your father respite. When you suggest she returns to him, he might question whether that's in his best interest and can declare her homeless.

Another idea is If she becomes violent or risk of leaving her own home at night etc, the police will only get involved if she's outside her property. (They just return her back otherwise).

Your mum doesn't want strangers in the house so you may have to give up your current lifestyle to accommodate. Alternatively, push the assessors to doing their paid job correctly.

That’s not necessarily going to be helpful. Lorazepam is often contraindicated in dementia care. She needs an assessment by the PLN with regards to appropriate treatment.

Hopefully your Admiral nurse can help with sorting out medication.

Pain in older people is very common, especially if you know they have arthritis. Or any history of manual jobs or significant accidents. And people with dementia will often say 'no' if you ask them if they are in pain.

I have seen so many dementia patients get calmer and less distressed when their pain is treated.

Hi, you need to ask for a continuing health care assessment urgently. This would fund care at home or in a nursing home. You would ask the mental health workers that are involved with her to arrange this. Beacon are excellent advocates and give 90 mins free advice https://beaconchc.co.uk/how-we-can-help/free-information-and-advice-on-nhs-continuing-healthcare/?gclid=CjwKCAiA8NKtBhBtEiwAq5aX2MV_mWGTGscMabepR8l5oxKy6N4Lr8JLvKJ9CPpe-pmuCr7SH4jz2xoCH9oQAvD_BwE

I used to print out the chc checklist which I would fill in for a rough idea of what the needs are, it doesn't mean you will always qualify as its for complex needs only but seeing the form is useful. Was she transferred to the supported living from home or hospital, these homes are not equipped for challenging behaviour.

Thank you to everyone for your help and knowledgeable advice and links etc. we have kept the pressure on today and been in touch with the crisis team and fingers crossed there is a place in a Dementia Assessment Unit for her where she can be admitted, properly cared for and then a suitable place can be found for her. I am feeling much less desperate than I was this morning. We have started the process if applying for funding etc. looking to Monday now and keeping the momentum going to get her placed asap.

This has been so useful and I'm pleasantly surprised that I haven't received much negativity - other than people telling me to be firmer which is fair enough.

Oh and the person who suggested she live with me for 3 months and I should 'adjust my lifestyle' - thanks for that, made me chuckle. I assume it was a joke. Anyway to everyone else thanks again.

I am glad you are making progress, @WickerShit . It really is a very difficult situation when you are trying to do your best for your mum and being blocked both by the "system" and by your stepdad who is clearly in denial about how bad things are.

Also laughing wryly at the poster who suggests a "lifestyle change" to accommodate someone in the middle/advanced stages of dementia in your home. Tell me you've never dealt with a parent who has dementia without saying you've never dealt with a parent who has dementia.

Once your mum is safe I think the fallout will be from your stepdad who is going to feel so guilty and that he's failed. Of course he hasn't but that's exactly how my mum felt when my dad was in hospital and it was clear he wasn't going to be able to get home. It's a lot to deal with.

If you have Power of Attorney, registered/activated/whatever the terminology is in the UK, then presumably your SF doesn't get to overrride the decision you make for her care?
I'm sorry you're going through this.

My DF was in a dementia nursing home in his last days, in his case mainly due to his high physical needs as he had advanced Parkinson's along with associated dementia - no violence though. However, there were other patients in the unit who did have pretty significant behaviour challenges. These were dealt with by them being allocated 24 hour 1:1, and in particular bad cases, 2:1 care.

No locked doors or restraints, just high levels of close supervision where needed. Plus lovely calm sunlit sitting rooms and a range of engaging activities. DF always had someone sitting chatting to him every time I visited, he was very calm and content.

Sounds like your DM was not properly assessed before and the care home was entirely inadequate. I would push for another assessment and stress how bad the behaviour problems are. Does the POA cover health and welfare? If so adult services are legally obliged to engage with you no matter what your stepfather is telling them.

They can only suggest places, you can't be forced to accept any of them. When DF needed a placement, we saw several places similar to what you describe and we turned them down flat. Adult services kept looking until they eventually found the lovely place he ended up in.

If you are not self funding can you pick a care home of your choice? There seems to be a number of people indicating that you can refuse certain ones if you don’t feel it’s right but what stops anyone just dismissing everything that is suggested until they get the one they really like?

Oh and the person who suggested she live with me for 3 months and I should 'adjust my lifestyle' - thanks for that, made me chuckle. I assume it was a joke.

Oh I'm sure it wasn't a joke.
Some people think that dementia is just a case of mild and gently amusing memory loss.

They don't understand the aggression, the refusal to wash or change their dirty clothes, the staying awake half the night, keeping everyone else awake, or the wandering and incoherent screaming.

I'm sorry someone suggested that, OP. You're at the end of your tether, that's quite clear, and you've been wrestling with this problem for years.

I might be getting the terminology wrong here but she needs a dementia nursing home or possibly admittance to a secure mental health unit. The thing is I know neither of those places will be all 'sunny lounge areas and wandering round the garden' and more 'asylum locked rooms sedation and restraints' which feels like a much huger leap than the one we were making to the care home environment. And tbh not one I think my SF will willingly agree to

This is wrong, @WickerShiT. My MIL had dementia and H signed a Deprivation of Liberty form for her. Her care home was lovely: residents could go freely from their room to multiple lounges and TV rooms, out on the balcony, down to the garden with help... There were classes and activities every day.

Go and see some care homes, see what you think of them.

OP I really hope you're feeling better and more confident about the sort of care establishment your mother will go to.

You've absolutely done your best but honestly, there is nothing more you can do in terms of home care. I'm sure you realise that. There are many on these boards who will help you through as you navigate the next stage.

i know this is very distressing OP - had a similar problem with my brother - one it reached crisis point, he was assessed in hospital - his local hospital said he was fine to go home -lived alone - he wasn’t so had him assessed at my local hospital and he was admitted the same day to a secure hospital. 7 months later he was discharged into a care home near me - took a little while to find somewhere to take him but, 18 months on, he is settled, calm and as happy as can be in this horrible situation - it’s grim but you have to plough on with getting the right care - I’ve no idea how the staff cope but they do - I know I couldn’t!