What happens when the money runs out?

[Lippy1234]

I’ve started looking at care homes for my DM. She will have to sell her home which is worth around 275k and pay fees of approximately £1400 per week. So she only has enough funds for about 4 years of care. What happens when her money runs out? Do people actually get moved to cheaper care homes? She is only 68.

I’m sorry I don’t know the answer to those questions. I just know she can’t stay at home.

I'm getting the impression you are particularly worried about her having to move.

You really do just have to make a decision based on what is the right decision for her right now.

You don't know what will happen in the next few years, either with her health or her care needs or whether the place you choose right now will still be the right place in a few years time.

You will be guided by social services and the NHS if they are involved. It sounds like she needs a reassessment from social care and a CHC checklist completing.

Sounds really tough lippy. Could she do a respite break in the care home short term?\

Maybe ask.the.crisis team what level of.care she needs. Depending on their assessment they can advise you what sort of home she may.need. good luck. Its so difficult getting it right.

Is she resistive to having her personal care needs met?
Resistive to taking medication?
Does she get upset or angry regularly, or experience any hallucinations?
Is she still able to understand what she is being asked?
Does she know the day of the week, month, year?
Does she still recognise familiar people?
Can she express pain, hunger, thirst?
Does she do anything because of her dementia that could pose a risk to herself or other people?
Has she lost weight for no apparent reason?
Does the timing of her medication make any difference to how she feels e.g is it more effective at particular times of day?
Does she need different amounts of medication depending on how well she is managing on a day to day basis?
Is she having any issues with her bladder and bowels?

These are all the types of questions that will be asked to identify if she has any dementia nursing needs and therefore a care home that can provide dementia nursing (often referred to as EMI) rather than residential dementia care (often referred to as EMD) or a specialist Dementia placement for people with really complex needs.

I’m so sorry about your poor mum OP.

I’d choose a home based on giving her the best four years you can give her. The physical impact of dementia means those who have an advanced illness are likely to succumb to the physical effects within a few years.

I don't expect you to answer those questions by the way OP, just giving you an idea of the things that would indicate nursing rather than residential.

Does she actually need nursing care? Some residential homes are very good, and less expensive.
As pp have said, chose the best home for now, 4 years is a long time to live with Alzheimers, you may not need to look beyond 4 years

hatgirl

She has problems with all those areas apart from managing personal care and toileting.

She has no concept of time, refuses all meds, doesn’t eat and then gets over hungry, spends most of the day paranoid and very, very confused, still know who I am but thinks I hate her.

I know it is hard to think about but a lot can change in 4 years. Your mum's needs will change a lot, the care home may change, social care funding may change etc etc. What you are looking for is somewhere she can be happy now. And if things change deal with that as it happens.

Oh dear.poor mum. She may.not be.able to make an informed choice to move into a home and sell hee house so she will need a capacity assessment so you can use your poa. If.she is.really unsafe at.home the crisis team may arrange an.emergency placement. Residential homes are cheaper than nursing homes and the social worker or dementia team will tell you what level of care she needs. The carehome manager will also need to confirm they can safely meet all her needs and may want to assess her themselves. Her safety will be everyones priority

Lippy 1234

Talk to Age UK. They are really helpful in establishing your rights.

Adult Services (Social Services) can provide 4 visits a day and should be making sure that she eats and drinks during those visits.

Following a care needs assessment you might be able to persuade SS to increase her care package in her own home, and they pay for it. Or you can fight for a Direct Payment and employ your own care to look after her.

That sounds like they accept council rates for people who are already resident with them. In my experience a good indicator of a care home that cares about people more than money

On the other hand it is well known that homes that take self and state funded residents, the self funded residents get charged a lot more than the state does for the same service. Either self funding residents are subsidising state places or care home owners (private businesses, after all) are making more profit out of self funded places.

CHC funding, as a pp has said, is notoriously difficult to get, so you can't rely on it. We just managed to get it for my now deceased father (fast-tracked when he was still with us, and a retrospective award for the period between him leaving hospital and the fast-track part starting). The application process is complex, with intense and lengthy questioning, and is not for the faint-hearted.
My dad had advanced cancer and had entered final life-stage. His needs were very great. We were surprised that they paid out his full fees of over £1400 per week, but they did know that it wouldn't be for a long period of time. We were expecting them to insist he moved home to a cheaper one (in which case we would have refused the funding and continued to pay out ourselves), but fortunately they didn't even suggest it. He was far too ill to be moved anyway, in our opinion, but I have read of them insisting and elderly people dying in transition.

*By "refused the funding," I mean that it quite clearly said on one document I read that you couldn't top up the difference between what they would pay and the total required for their existing care-home. This seemed crazy to us, and I've heard different experiences, but it didn't come to that in the end, luckily.

Unfortunately people with early onset dementia often do have a different presentation to those who get it later on and it is more complex and progressive.

From what you've suggested I would suggest a CHC assessment. A key part of this assessment is how compliant someone is with care and how risky their behaviour is.

Also do you have enough funds to pay for the home whilst the house sells? Social services will offer a 12week disregard if they support that a care home is needed.

I would contact social services and request an urgent assessment, stress the risks and the current involvement of the crisis team.

Did either of your parents have any service in the armed forces as if they did she may eligible for support from their benevolent funds .

Can you rent her house out to part fund it? That's what we do with my Nan, plus carers allowance covers about 80%. At least that way the asset is not gone though obviously I appreciate there is still a shortfall.

We planned to do that for my dad, jakeyboy, and he also had a very good pension, so we would have covered around 3/4 of the fees. But then his condition rapidly deteriorated, the CHC funding kicked in, and then he died.

Thanks everyone.
I’ll contact the social worker tomorrow and speed up our second assessment (we only had one last week but it’s inadequate for my DM’s needs).
Renting out the my DM’s home isn’t an option as they’ll be thousands of pounds per month defecit.

Place in the home that is best for her now.

Cross the bridge of what happens later when you get to it.

I was told that if it could be argued dads health would be adversely affected by a move than they may pay a bit more.

I also realised that after paying for the years he could afford he was likely to be much worse re dementia and not actually be able to know the difference between the homes - once you can’t enjoy activities any more it doesn’t matter if there are outings / dance nights / bingo what ever anyway.

As it was he had a great 15 months then deteriorated and died over about 8 weeks looked after by carers who had known him before and had a rapport with him. He wisely didn’t linger long enough for them to start querying if they could sustain the level of care he needed ( not being nursing ) but if he had CHC would likely have been available to him.

This is what I did with my dad:
Researched care homes and got him onto the waiting list at one I liked and was recommended
Asked for the max 4× a day carer calls in the meantime
Talked to the finance section of adult social services about my plans (i.e. to move dad into a home and sell the house to pay for it) They were very helpful and guided me through the process of deferred payments (where the local authority pays fees until the person's house is sold then you pay them back)
When a place came up I pushed politely but firmly for the finance authorisation so Dad could move asap. House still needs to be sold but Dad is well looked after.
When the money eventually runs out I will need to claim it from the LA again - but this will be some years down the line. I had to make the decision dot to worry now about that. Hopefully he will be allowed to stay put as he'll be very elderly (I know your mum isn't) and settled by then.
Agree with Helen above - pick the best home for now. Don't borrow trouble from tomorrow as my nan used to say.

Good advice, thank you.

I'm sure things changed a while ago and people only had to pay upto 72000 of their own money. No, that was just a proposal for improving social care. It never even got as far as being a Bill in Parliament.

I know it's only a drop in the ocean in terms of the care fees, but if she is self-funding she will be entitled to attendance allowance.