advice about care home

[NettleTea]

My mother in law is frail, she is 84 and has parkinsons and polymyalgia rheumatica. She is pretty much bedbound now and has a stoma and is wearing pads as struggles to walk to use a commode.
Until recently she lived at home with her husband, who has dementia, but has been a very difficult man - coercive control, bullying, financial abuse, but not physical. There have been times when she has fallen from her bed and he hasnt come and she has been left on the floor all night.

She had 4 carer visits per day, with 2 carers and he had 2 visits for his own needs. The nights were a problem because she had been calling upon someone who lived next door, which was initially just now and then, but built up and up to being sometimes 3 times in the night. He wouldnt say no but he was finding it really difficult - he works manually and was getting very tired, and he has no training - the last time he accidently moved her and caused her skin to tear as its so fragile after years on steroids.

He had to work away from end Feb and then it all kind of fell apart because she didnt have anyone to call upon, and social services had only just been made aware that she was needing all this extra help.
During the last few weeks her carers had reported a serious deteriation in her health and a couple of weeks ago I got a call from adult social care saying she had agreed to respite care at a next door care home. She had been worried about her husband, but actually he is absolutely fine - social services have stepped up his own care and he has actually taken his dog for a walk for the first time in months.

Anyway, adult social care said that the care home was opening up NHS beds due to what was going on and she would be OK with this. Today she called me and told me they gave her a bill and she was really worried. I suggested it was simply like when she had carers and they invoiced her, but she has been assessed as only paying 17p a week for her home care, but said I would speak to the social worker.

I spoke to him today and he said that as her care cant be managed in her own home he would ask the care home to do a CHC assessment and would also apply for a hardhip fund to help with any excess.

However today one of the peoplefrom the carehome dropped a letter onto my car which says they already did a CHC last week and she didnt meet the criteria, and if she wants to appeal she has 28 days, and needs clinical evidence.

The carers said that her care plan had been updated to palliative care. I think that she believes that when our friend comes back from working away next week that she will come home and that he will carry on. And I suspect this is what she told the assessment people. But he really doesnt want to be called over 2-3 times a night, so the nighttime care just isnt there.

Also there is no record of how she was assesssed - just a result saying she didnt reach the criteria - how can we appeal when we dont know what they said, or what SHE said?

And worst of all is we are going to have to have the conversation that she is probably best staying where she is - where her quality of life is much better and the care she receives is much better (which she has said)

Its a really difficult situation

You as a family member should be given the opportunity to be involved in the CHC assessment process. There is a CHC checklist, which is completed to meet a threshold for further assessment with a decision to support. You should be able to see this paperwork and challenge if in correct.

You do need to be aware that. It is incredibly hard to get CHC funding, even palliative patients are often denied until they are nearing end of life ( apologies if this is a little bleak for you). The adult social care team need to talk to you... ultimately if she does not have needs that meet the threshold and gas capacity and can be persuaded to stay then she will need to self fund.

It may be worth talking to the neighbour so he understands that by agreeing to be there it actually makes the decision to get the mist appropriate care more difficult.

Thank you - I am not sure that even my MIL knows she was assessed. My partner has POA for health and finances.
I do think I need to see a copy of the paperwork. It was the adult socal care manager who suggested applying for CHC and Ive downloaded the checklist. I think she COULD just about qualify.
She doesnt seem to have her full capacity - she seems confused as to what is reality and what is a dream, and her speech is very badly affected by her parkinsons so she isnt that easy to understand. she left an answerphone message yesterday and we really couldnt understand what she was saying at all.

I will speak to her social worker this morning

Speak to Age UK - apparently the government funds a free hour with a legal firm that deals with CHC assessments. Access is via Age UK. They can tell you whether an appeal is likely to be successful and give some help with it. I used them - they were helpful in reassuring me there was no point in an appeal, so I was relieved from going through all the work of mounting an appeal at a time which was already busy and stressful.

Googling CHC "assessment tool" (the quote marks are important) should give you a downloadable version of the full assessment; or try this link
www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahUKEwjlptzL1vvoAhUOQEEAHXH8D4IQFjAAegQIAhAB&url=https%3A%2F%2Fwww.mascip.co.uk%2Fwp-content%2Fuploads%2F2016%2F10%2FDecision-support-tool-for-NHS-continuing-healthcare.pdf&usg=AOvVaw1eLalluBhFJ62HsyKmc_Ux

In theory the neighbour should be irrelevant to the assessment - the assessment is of needs, not of unmet needs.

What you have to demonstrate is that she needs not merely nursing care, but nursing decisions every day of her life. If the situation is unchanging, she's unlikely to be assessed as having primarily a nursing need - even if she is in a nursing home and being attended to by nurses every day.

Your partner with POA should be able to see the initial checklist and, if she went on to the full assessment, then the results of that.

Areas to scrutinise, from what you have said, are falls - frequency and unpredictability, and risk of skin breakdown.

If you don't get CHC, the value of her home should not be taken into account in the assessment of financial needs as her husband is still living in it. So her financial means should be the same as for the assessment for home care, ie her personal income and savings.

If husband is staying at home alone, you should let the Local Authority know as he will be entitled to the 25% single person discount on community charge ; and if he has a dementia diagnosis, many Councils apply a further reduction. You should also apply for Attendance Allowance for him if he isn't already getting it. Your MIL won't be eligible for AA in a home unless she is entirely self-funding with no contribution from the Council.

Thank you for the advice, that is very helpful.

I spoke with the social worker this morning and he was surprised that they had done a CHC so soon and said that they had not requested any input from him at all.

He had also put in an application for hardship funding and taken a look at her previous financial assesment, because he noted that several things were amiss with it - for example the fact that they owned their home, which they dont. It is a farmhouse which they live in, but belongs to the ltd company that is the farm, which she only has a few remaining shares in - theyve never held a freehold of it and the shares have been individually valued recently too.

He also said that as her circumstances change we or he can request a new assesment, and agreed that in the current covid situation it would certainly be worth going through the checklist and putting reasons why she hits various targets given she cannot have someone with her.

He said that although she seems to be under the impression that her stay is short term and as soon as the neighbour (he is a farm worker/independant builder who lives in a mobile home at the farm but was never intended to be a carer for her - his work for the farm is related to different enterprises altogether) that this wasnt the grounds that she was admitted, and adult social care had said that it was likely to be a long term placement.

He said that we really need to have that conversation with her, because its not appropriate to rely on this bloke, especially as he is not trained, and as a semi employee of the farm business it could get very sticky regarding insurance IF that were needed as an excuse. The guy is kind hearted and would struggle to say no, and FIL can be exceedingly difficult so if he thinks he is refusing it could cause all sorts of problems. Although he does seem much happier now she has been moved into the home, so who knows. Its such a bloody messy situation.

But basically SS said not to panic. Covid has thrown everything into disarray. they wont be sending her home. They cant support her needs at home. Her husband is incapable and unwilling to help at all, in fact is detrimental to her care in many ways. And according to the manager of the home she is happy and interacting with people and actually enjoying life.

FIL has had a careplan in place for a while, ever since MIL had to go to hospital previously - so they have increased that to 3 visits a day and a weekly help with shopping etc.

things have moved on. her hardship funding has been approved and so it looks like she wont have to pay for anything
However she is now sick, with a fever, in a home with covid positive cases, and is not speaking or eating.
Im hearbroken but trying to keep it together because my kids dont even know that there are cases in the home.
She had wanted to come home 10 days ago, but it would appear that she was already unwell at that point and it seems its because they put everyone in quarantine in their rooms and she didnt like it.
Ive tried to call her but she is not answering her phone

It sucks so so much doesn't it. I'm sorry

My DF is in a home where someone has died with Covid. I haven't told the children - it would add to their worry for no purpose.

I've had a wrestling with guilt as to whether I should have brought him home, but realistically I couldn't cope with all his needs, and DH has been told to shield, so both of them would be put at risk by district nurses coming into the house.

DF doesn't answer the phone either. Are the home staff OK when you ring to ask how she's doing? Can she read? Can you send letters via email that the home will print out for her?

yes, we could not have brought her home. My daughter is shielded, as is my partner.

she got a little more energy yesterday after getting progressively worse over the weekend and Monday and ate something, but today she is much worse and they are unable to wake her
She has the virus, it seems most likely, as others in the home are having the same symptoms and all got sick at the same time, and they have had positive cases. However the virus may be speeding things along, but she only has it mildly, for which I am thankful as it sounds awful. She has no cough, no shortness of breath, no pain. She has a temperature and fatigue, and it seems as if this has excaserated her other conditions.

The deputy offered us to facetime call, but this seemed, after talking to the manageress, to be more for our benefit than hers.
We were discouraged from allowing her husband to visit, as it would be unlikely that he has the capacity, with his dementia, to understand the risks and consequences - it would be almost certain that his home carers would refuse to provide care if he went into somewhere with known cases, no matter how much PPE they put on him, which would add another level of catastrophe from what is becoming an absolute omnishambles of horribleness.
He is also alone, my partner, his son, is shielding. So he would see her, and by all accounts she looks dreadfully ill, despite being comfortable, and would have nobody around to help him deal with it.
We have had to make the decision to not let him know, just break the news if we need to. The home is a short walk from his home, we cant risk him going there. Its not safe for him either.

So sorry she's been unwell in the home. It's so tough in care homes right now.

I'm wondering if the care home applied for CHC fast track which is for end of life care because i don't think many care homes will be allowing CHC nurse assessors into care homes to complete full assessments, they're not in my locality.

I would ask your partner to call the local CHC team, they will work for the local CCG and the number should be available on google (but if you can't find it you can PM me your area and I'll be able to help).

she had social care apply for a hardship fund which they have awarded us. This at least is a relief as one less thing for us to worry about.

But may ask about this too, just in case it doesnt cover all of it

my mother in law died this morning.

I don't know what I can say

My sympathies for your loss OP but as someone who has a long term bed bound parent in a care home with no hope of ever leaving take a little comfort that it was quick and painless and she won’t have suffered whilst deteriorating further

yes, agreed @Inforthelonghaul
My partner said the same today - the thing you cant say, that it was a blessing for her given her most likely alternative.
she was tired.

the doctor called and spoke to my partner today. Went through all her medical history to explain why she was so frail and vulnerable, but to explain that ultimately she had to put Covid 19 as cause of death on the certificate, as everything pointed towards it.
The fiasco with the testings mean that we will never have a definative answer, but given a bunch of them went down with it at the same time, and there were positive cases, it seemed too coincidental.
I said we were blessed that it hadnt progressed to the breathing difficulty stage, she took the opportunity to step out before it got nasty.

So sorry OP . I would echo exactly what @Inforthelonghaul said. And would add that at least she had a period right at the end of her life with better care and quality of life.