Nightmare situation. Can’t cope. Need help.

[AMBOG]

I posted on another thread here asking about care at home so apologies if I am repeating myself. My mum is 91 with advanced Parkinson's. Dad is 90 with dementia ( manifested as extreme memory loss but everything else he is ok, so can manage to cut the grass, go and get money, make himself simple food etc) Everything has been deteriorating badly for the past year. Mum is like a lot of old people and despite complaining every day that she couldn’t cope and she was scared of falling refused to have any help and continued living in the big 4 bedroomed house they had always lived in. I live up the road and was going round nearly every day to sort problems out along with the doctor, medication etc. I know all on here are familiar with that. It was getting worse and worse and mum and dad’s relationship was breaking down as well. She complained that he swore at her and didn’t believe she couldn’t do things for herself. There was 1 occasion when she fell and was lying there for hours, despite having a falls alarm and me being up the road, she said dad had tried to smother her and was kicking and punching her ( he is a very quiet mild gentleman, who usually does her every bidding) Anyway the inevitable happened and she ended up in hospital and then a rehabilitation home after a fall. She came home with a care packet of 4 visits a day and an assessment that said she was fine and only slightly cognitively impaired, she lasted 12 days before she was in hospital again. In that time I called a social worker because she was making such unreasonable demands on dad and then she would be furious with him and call him names ( an old shite) etc. She also accused him of smothering her etc. She had tentatively agreed to look at care homes but the decision EPA’s taken out of her hands when the doctor rang me from hospital and decided it was unsafe for her to go home. I found a nice care home near me and dad and she has now been there for just over 2 weeks. Now comes the real problem. She has deteriorated terribly. They now say they can’t keep her as she is violent and aggressive. She screams all the time and they have diagnosed Lewy bodies. Now I consider how the last year has been I can see that there were signs but this is so extreme I cannot comprehend it. Also whenever I ring to speak to her she sounds normal and asks after everyone and asks what I been doing. At the moment we are paying £1,160 a week to the care home and another £1,200 for agency 1-1. I found another care home that had emi provision but they probably won’t take either even with the extra 1-1. I know the care home does a cha assessment and they have contacted the mental health team but no one keeps me abreast of what is happening. Every day I ring social workers, care homes, care providers. I’ve cried everywhere this week, including marks and Spencer’s car park. People see me and run for the hills as they know all they are going to get are my problems. In addition to all that dad rings (11 times yesterday) to ask me where mum is and tell me how sad it is even though I have written everything on a white board for him and see him nearly every day. I feel like I will never find a place for mum as she is so bad and I can’t bear the thought of her being so distressed. I have rung everyone and will call the social work are again first thing on Monday. I feel like this will never be over. What is they live to be 100. I will be a shadow of my former self, if not dead too. Has anyone else found a parent so difficult to place? Sorry this is so long and I haven’t checked for mistakes either.

I’m so sorry you are going through this. I don’t have any experience to share but I am listening. Your love for your parents is so clear from your words (and I could see no mistakes ).
One un-MN appropriately socially distanced ((((((((hug))))))))

for you.

Have you been in touch with the mental health team? I'm not sure how it works in your area but here we have a memory services would would have been involved with the assessment for Lewy body dementia and they are very helpful with supporting with situations like this. In our area there is an enhanced care homes team who support care homes and patients with finding the right placement and ensuring they have the right system of support. They might even recommend a period of assessment at the older people's mental health unit ( though possibly not in the current climate).

Lewy body dementia is difficult as people often present is a very variable way. But you've done a lot to support the home including providing 1:1. Are you paying for the care privately? Unfortunately that often means SS can be more reluctant to offer support/assessment but you are entitled to an assessment. Tho currently that is likely to be virtually and there are long waiting lists.

Your mums needs sounds very significant so I would also be requesting a CHC assessment for funded NHS care. The thresholds are very high but the unpredictable behavioural aspect might mean she qualifies. This would mean that not only would her care be funded but she would have a care manager who would oversee her care and support what you're doing now.

No advice but and a bump

Thank you for your kind replies. I have just been for a lovely walk with 2 friends. Their ears are now bleeding. Standstilling you never feel you’ve done enough or been kind enough. When mum was at home we had loads of rows because she was so difficult. I was full of rage and often hated her. Now I realise that a lot of her behaviour will have been down to the dementia and the rage is gone. I just feel really sorry for her. Oiboi the social worker has mentioned the mental health team but I am not in contact with anyone directly. It is always through the care home who do not really communicate with me. The social worker has also mentioned the care home team but again I don’t know what the outcome is. It will be yet. More phone calls on Monday. We are paying privately but if we have to keep paying 1 to 1 mums money will run out within the year. Dad has his own money and the house of course. The home says they are doing or have requested a chc assessment which again I will chase up on Monday. The problem is we all thought she would be moving care home and then we would sort it all out from the new care home bit now I know it’s not that easy.

If Mum is that bad then she needs a CHC assessment as she would score on several of the criteria so it is good the home have put the wheels in motion for this.

Is the home specifically a dementia care home? An experienced home will deal better than one that isn't.

And she sounds like she urgently needs a referral to Older People's Mental Health - even in these COVID times assessments are happening via video and the information from the care home staff would be very helpful to them. GP would need to make referral.

There is a lot that can be done to help her with her violence and aggression.

Also when did she last have a review of her Parkinsons medication? If it was a long time ago she is probably over medicated and this can have a massive impact on behaviour. She needs a discussion with her Parkinsons nurse or consultant - or if she has been discharged just getting the GP to call up the on call neurologist for some advice (this has worked wonders for me when I have been in this situation).

Then you have Dad - you may find that between the 2 of them they were propping each other up to get by. It is very early days for him so you are just going to have to focus on Mum's needs but he may well need some help at home of his own.

I dont have any knowledge of the care set up, but just wanted to suggest that your Mum is checked for a UTI. It can go un noticed for ages, it is very common in older people who have had a hospital stay and it completely screws up mental stability in older people. Im not saying it would solve everything, but if she has one and get antibiotics, it could get things back to a manageable level for the moment

Get a CHC assessment, without a doubt. My mum now has all her care funded but also has a funded 1-2-1 for 12 hours a day. We had to scream from the rooftops - lots of 'duty of care' and 'safeguarding risk' conversations with social workers but we got there.

Sorry, didn't read your update fully. The care home should be communicating everything with you. Ask for a meeting (zoom if necessary) if they're too busy day to day. You can get in touch with the CHC yourself and find out where they're up to. Stress the time urgency. She is a danger to herself and other people. She has a documented falls history and clear behaviour issues. Write down everything you can think of, all the instances from when she was at home, in hospital and now. Keep a note of every conversation you have and with who. It's not easy but you can get to a point where day to day, you aren't worrying every time the phone rings.

Second a PP on a UTI check - sudden deterioration in mental capacity/hallucinations/rage is often caused by a UTI in my experience

Hi there sending I have been here and it’s so tough but might have some useful tips
Try and persuade your father to set up a separate bank account so his assets are not taken into account
Chc is key if her health needs out way care needs with advanced Lewy bodies you might have a chance and care will be free
If you are paying you will get some help when funds drop below 25k or whatever it is this year
Best interest assessment might be helpful to determine needs for both parents and a Carers assessment for you try and claim aa for your dad if still at home in their house - the house and his personal finances are not taken into account hence separate funds if poss
Psycho gerientrician older persons m h team is who you need and will have made the diagnosis also a nursing element for care should’ve paid and the amount you’re paying is huge the other option is to have live in Carers as often 500-800 pounds a week and she can stay at home we did this for a while pm if you need too

Social services also have a capically on what they will pay and this can mean if they do provide care she can be moved to a home not of your choice as cheaper and something called best value - get all reports together to put your case to chc funding and the relative and residents association website had cases and a forum on this get a solicitor and you mp involved if you need to to add weight to your case good luck

Definitely push for a CHC assessment. The first stage is a relatively simple checklist, if that's positive then a full assessment should follow within 28 days.
If you have time, google it, and get prepared. The more evidence you have for the assessment the better.

We were in a similar situation with my dad, advanced dementia which included violence and aggression. Nowhere locally would accept him.
It's not until you experience the system yourself that you realise how bad it really is. People talk about "putting" elderly relatives in care homes, assuming that the care homes welcome everyone with open arms!

I really feel for you, I remember my heart racing every time my phone rang, it's non-stop isn't it?

In fact, seeing as your mum has already spent time in rehab and hospital I'd be asking them was a checklist carried out at the time for CHC?

Thank you so much for all your helpful replies. Firstly they have checked for Utis and infection. She also had an assessment in the rehabilitation home about 3 weeks ago and an assessment when she left hospital and there was no mention of dementia so she is not ina dementia care home as it was not deemed necessary. That is why it is so shocking. It is so sudden. I have set a separate bank account up for mum. They both have different savings accounts of about £150,000, which I’m sure they didn’t think would go on care. As I said before mum’s money won’t last very long while we are paying £2,300 a week. I have set dad up with a care visit once a day to do him a meal and I have made a menu for him where he can see when he has to prepare a sandwich or put a microwave meal in. I usually ring him to remind him and sometimes he comes up to me. He manages day to day mainly he is ok because he forgets that mum is not there and it is when he looks for her that he gets upset. It’s going to be another marathon phone all day for me tomorrow then. I keep crying on the phone to people and then not being able to take in what they are saying. It is great to get all this knowledge and support on here. I am going to make a proper list in the morning and not take any waffle from anyone.

CHC funding is only payable if there's a healthcare need, not a social need. So, for example, someone like your dad has a social need and therefore would not qualify.
If your mum has complex needs due to physical and/ or mental health issues then she may qualify for funding. It's difficult trying to prove that dementia is a health issue though.

The full assessment is 12 different domains, your mum needs to score highly enough in the relevant domains in order to qualify. It's very much evidence based.
Age UK have a good factsheet you can download.
It can be a frustrating process but you are potentially saving tens of thousands of pounds, more importantly your mum gets the appropriate care.

One of the MNetters here got CHC funding for her dad as his behaviour being unpredicatable and complex which needed a lot of input that couldn't be preemptively managed with a plan. Theres a checklist here which shows that from what you've said about your mum sounds like she gets 3As which means she can have the full assessment

It sounds incredibly difficult with both of your parents, and I can only offer virtual hugs

If she is not in a dementia care home, this may be part of the problem - they just don't have the skills to deal with her behaviour.

Management of behaviour in dementia - strictly speaking your DM would be called Parkinsons dementia rather than Lewy Body Dementia as she had Parkinsons already but the management is essentially the same - goes:

1. Check for reversible things like UTI, pain
2. Look at behavioural causes - what are they telling you, how are you reacting to them
3. Look at medication - lots of elderly people accumulate medication over the years which was a good idea at the time but now their health has changed needs a review

Especially important in Parkinsons dementia - some parkinsons meds can drive the behaviour and need to be cut back. This can result in massive improvements

1. Finally consider medication - there are good meds to use in Parkinsons dementia but you should do all the other things first.

Step 2 is the most important and often really badly done. If the person is cared for by staff with experience and training in dementia it can make all the difference.

It was @whataboutbob that has CHC experience, and I seem to remember her recommending a group who can assist with the process

Thank you again. I feel desperate to get her somewhere that they can look after her properly. I will research all the advice given and try and pin people down on Monday.

I have been summoned back to the elderly board by @CMOTDibbler!
But seriously, yes I did manage to get CHC for my father. Like your mother, he had quite extensive behavioural issues when in the middle stages of Alzheimer’s. Getting CHC effectively meant his care was paid for by the NHS. It is well worth applying and I feel that persons with dementia with an element of challenging behaviour probably have more of a chance of being awarded CHC. It is a bit of a numbers game, you have to score in a variety of domains and if the score is high enough you get CHC. It was a few years ago, but here is what I did.

1. read up on the CHC documentation which available on online 2) identify which health and. / or social care professionals who knew my parent would be able to help. CHC involves a 1st screening tool, if you pass that then you go on to the full test with the different domains. The domains score aspect sof health such as skin integrity/ mobility/ nutrition/ elimination/ cognition/ behaviour etc. You can score low needs, moderate needs, high needs etc. I can’t remember the exact terminology but basically it is a slightly depressing exercise in proving your parent is badly off enough in as many domains as possible. You need tangible proof. Eg with behaviour, there was a diary kept by dad s home carers. The fact that he needed a double shift to be managed. Also that I had try to settle him in to a day centre and that the lady running it basically told us not to bother coming again as they couldn’t cope with him, etc etc. Then there were health issues, he had diabetes, needed blood sugar control or behaviour got worse, etc etc. I got some advice ( free) from Angela, a mumsnetter who runs Care to be Diffrerent, an organisation that advises people how to apply for funding and challenge refusals. I would say go for it, it is hard to get CHC but not impossible. You need to be clued up and organised but it is doable. Post again and use @whataboutbob to alert me to queries as Dad died 2.5 years ago and I very seldom go on elderly parents board. Good luck.

Thank you very much. I will make sure I am very well prepared.