To move my brother to a cheaper care home?

[Rollwithitperhaps]

My brother has vascular dementia and has been in a care home for over 2 years. He is self funding. I have had a few concerns - clothes going missing - no access to his daily regime now (used to have a folder in his room but have now gone digital and cannot get access). They must now be on their well into double digits as far managers are concerned since he’s been there. Just been notified today that his monthly fees will rise by £700 per month to £7300 pm. I’ve been told that if I move him he will deteriorate - he is settled there but largely unaware of very much - he knows my face but not my name or who I am. He only eats and sleeps really. Should I try to find somewhere cheaper that looks after his needs and risk him dipping or leave him where he is?

I was forced to move my dad from a fully funded high dependency chc bed. I can't remember the exact stats but they were roughly 80% died within 6 months of moving at the time. My dad lasted 2 weeks not including the 2 weeks he spent in hospital dying from aspiration pneumonia and sepsis, 10 of those days he was on the Liverpool pathway. No one can advise you the best thing to do I just wanted you to know my experience.

I can imagine this is the amount now I think from memory my day was about £3k a week in 2017. There were fantastic though I loved the manager there.

Remind me to shoot myself if I get dementia

Social worker here. Few things to consider.

1. Any move will affect him for a while but with his level of awareness he won't really know what is going on.
2. What is his savings level? If his savings drop will the local authority pay for his current care home or are they going to move him somewhere cheaper.
3. If you are unhappy with the care home look at moving him. Care Home rarely improved so the problems you have will continue.

You find as well that a lot of younger people in this boat never had sod all in the first place (ie no savings, property or pension) so don’t pay a penny, or pay very little indeed. Very, very sad.

Yes a good suggestion

Think we work in the same place 🤣

Surely you mean £9000 a month or £11,000 a month, not week?

A friend of ours went into a care home with dementia and changed a lot, was only sleeping and eating. A loooooot of sleeping. Turned out he was being heavily medicated as the care home did not have enough staff to look after the patients. Disgusting!

It's gone up £700.

I work in a care home that’s not long gone digital, to be honest you are literally describing the one I work in, right down to the amount of managers we have gone through! Even though they are now digital, you absolutely have every right to see his care plan and what’s happening especially if you have lasting power of attorney. Are you in Norfolk? I swear you are describing where I work 😔

The only thing that would bother me is not having access to his records. Presuming you are NOK, POA you should be able to login to their system at any time from your home, work, wherever and view them. Have you checked their QCC rating?

The level of fees discussed on here makes me really sad/angry.

The money certainly isn't being spent on staff wages or amenities.

Some people are clearly making a tidy profit out of other people's illnesses.

If I were in charge of the UK, I would make nationalise care homes and make them not for profit.

I am not in Norfolk but it is so worrying that our care system is in such a state - I have started to look at alternatives but will take my time - don't want to move him unless absolutely necessary. I will give the new manager time to see if she can sort out some of the issues they are having.

There is a link between significant change and deterioration in dementia, with moving being high on the list of causes. It is therefore avoided unless necessary. Usually that would be when the person's needs increase to a point where they cannot be met safely in the current environment, e.g. residential level to nursing (where there is a qualified nurse on the unit 24/7) or 'elderly frail ' to a dementia unit with more staff and security.

As others have said, due to the volume of laundry done in care homes, clothes do get 'redirected' with other residents' belongings. It can help to put a room number on as well as the name. If other things are going missing, staff can look at other measures to address that. It's often another resident who no longer grasps the concept of personal belongings or space.

Dealing with multiple, changing managers is frustrating and difficult for staff too. My suggestion would be to
a) collate notes from previous meetings. If you don't have any, they should be on the home's files. Ask them to collate and ask for copies if you don't have them already.
b) arrange a meeting with the current manager and their manager. This may be the owner if it's a small enterprise but larger organisations will have a higher management structure. They should provide a suitable person.
c) compile a document that lists the issues you have raised and what agreements were reached, when and by whom. If you now feel that you would like to discuss other options, state that too.
d) ask that the meeting is minuted and request a copy.
e) state that unless issues are addressed and mitigated as much as possible, you will be looking for alternative support for the gentleman.

I have to wonder, though, how they are justifying such a huge cost increase, especially as the gentleman has such low needs. It might also be worth speaking to Social Services about their agreed rates and what they would pay when the savings threshold is met. If they would not pay the current home's fee levels, he would perhaps need to move at that point. They may also be able to give you some local options that you can research. Check the CQC (in England) report online and ask around. You would learn a lot by visiting the top choices and speaking to the managers there. Watch how staff are interacting with residents. Ask about staff ratios. Speak to residents or their family about their experience. The homes that look nice don't necessarily provide the best care. Good management, staff and general cleanliness are more important.

Finally, expensive does not necessarily equate to good. As LPA you also have a duty to make good financial decisions for your relative.

It's a really tough decision to make but if you do the groundwork you will at least have all the relevant information to work with. Good luck! 🙂

Thank you you detailed response - I will take everything on board - re the fee increase - they are saying it is the changes to NHI and minimum wage

No - a week
its in a high secure dementia home

My dads dementia home staff used to tell us that they had awful trouble keeping track of glasses, dentures and hearing aids , they are by nature difficult to name, and patients would take them out endlessly and leave them in strange places. Same with clothes, if not very well labelled it’s hard to keep track. Although a photo in a frame of an unknown woman kept appearing in my dads room, my mum would take it down but then a member of staff would find it and put it back up, thinking it was a relative he’d forgotten about .

Wow! That's extortionate. I had absolutely no idea that there were care homes charging that much. Thank you for opening my eyes.

I was shocked too, I didn’t believe it when I first heard, but now I’ve been working there I know for definite that is what the fees are.
I must admit that the wages are better than other care/nursing homes in the area but only by a couple of pence a hour which is nothing considering with what we have to put up with, every day is a physical and mental challenge

From experience - both DM and FiL had dementia and both eventually had to move to care homes - the most expensive are absolutely not necessarily the best anyway - we looked at so many.

Plus, as her dementia got worse, and she started to bother other residents, an aunt with dementia had to move after 2 years from an ordinary residential CH to one with a dementia wing. We were very worried about how the move would go, but TBH (by that stage) she barely seemed to notice. From what you say about your relative, I’d imagine you might well find the same.

I’d certainly have a good look at others. To me, from experience, esp. when dementia is involved, cosy and homely, with cheerful looking staff, is far more important than ‘ Homes and Gardens’ decor, or sundry facilities the person will not longer be able to appreciate or enjoy.

The very worst CH I experienced, was an outwardly very plush and luxurious one, right on the sea front, where an aunt of dh (no dementia ) put herself for a month while her helper was away. I visited her there twice. It was by far the most expensive locally, but the staff were surly and miserable and the atmosphere was very unwelcoming. The aunt hated it there and was very glad to leave.

Thank you for the wonderful job you do under very difficult circumstances, but I can't see how those sort of charges can be justified. It's a ridiculous amount of money! How many residents are there in the home you work in?

45
not everyone of them pay between £7000-£11,000, some pay less, it depends on what type of care they require and if they have a carer 1-1, they have a very high staff to resident ratio due to a lot of complex needs, lot of residents come from other care homes which they have been asked to leave due to their dementia, a lot are very aggressive, so a majority of homes won’t take them,

Moving him could upset him. Why are you only considering a cheaper home, to you want more money when he dies?

The OP has engaged with the thread and many posters on it, and her subsequent posts and explanations have made it quite clear that she isn’t grabbing after more money when he dies, and that there’s a lot of relevant background to her post. It’s a sensitive issue, and reading the full thread rather than just the OP before wading in helps avoid insensitive comments.