Care homes for dementia- how to plan?

[legoanddogtoys]

I'm wondering if anyone can give me some practical advice on how things work if the decision is made that an elderly parent would be best cared for in a care home. Mum does not yet have a formal diagnosis but I think it's clear she has some form of dementia (awaiting memory clinic appointment but most physical causes ruled out) and seems to be deteriorating quite fast. Other family members are resisting even discussing residential care, but I think it's inevitable and would like to understand some of the practicalities of how it would work (as I know I'll be expected to deal with it all once that decision has to be made). I've tried googling but there's a lot that's not clear and I'm worried about encouraging mum and the rest of the family to accept a solution that's not actually feasible or affordable.
In particular:

• Mum has some savings but based on what I've seen of the cost of care homes for dementia patients, she'd be luck if it lasted 6 months. I know we'd have to sell the house (she lives alone) but what would happen when her savings run out if the house has not sold? What happens when the proceeds of that sale run out?
• I've read that the local council will have to pay once assets fall below a certain level, but presumably this is only if they decide she needs to be in a care home. How is that determined? If family are currently helping with tasks will it be expected that this will continue (so she doesn't have a need for this)? And what would happen if she moved in to a care home, privately funded, before the council considered she absolutely needed it then wanted help with funding when her private funds ran out?
• If it looks like she may need help with funding further down the line, does this have an impact on where she can choose?

Our situation is that Mum is currently able to dress and feed herself but frequently says she feels like she will fall if she moves/says she has fallen (but no bruises or injuries). She can generally remember things (like where she put things, what time to take her medication, who the prime minister is etc) but has trouble processing information. She also suffers from auditory hallucinations/paranoia and is genuinely frightened that people are in her house and mean her harm. She's said herself that she is scared a lot of the time and wishes she lived with other people but I don't think a standard retirement home would take her. No one in the family has space to take her in, and I do not wish to consider selling both our houses and both moving in to somewhere bigger as a) this would inevitably mean me becoming her full time carer for years, which with the best will in the world I just can't do and b) it would clearly be very messy if it did come to her needing to sell her assets to fund care. Any information, or suggestions of where to find out more would be very much appreciated. At the moment I'm struggling to get any answers in advance of being in that situation

Age UK have loads of really helpful factsheets and a phone helpline where they can guide you through it all and point you to the right factsheets etc.

Adult social care can assess her needs - initially she would likely need carers coming in a couple of times a day, up to 4x daily. She would contribute to this. If she got to the point where she needed further support ASC will determine if her needs can be met better in a care home setting. They will help find a suitable home.
I suggest that if you haven’t already done so. Your DM applies asap for LPA as if she loses capacity you could struggle to sell her home.

Hello OP.
May I suggest you join us on THIS THREAD for advice and ongoing support.

Sorry this is long but I'm trying to answer most of your questions. I’ve been through ten years of this with my mother, who had dementia.

From your description of her symptoms, a residential care home would not take her, she would need a dementia care home.

I would spend my time on practicalities rather than trying to persuade anyone - especially your mother. She will almost certainly never agree to go into a care home so you have to do what she needs rather than what she wants. (I am assuming you have LPA so you can go ahead and do this.). I told my mother she was going to a hotel for a break. She never seemed to realise the care home was not actually a hotel and was very happy there with people always around to reassure her.

Once your mother is in the care home you need to try to sell the house asap. The local authority will do a deferred payment for care (i.e. they will pay fees and take it out of the house funds when it sells) but it would be logistically easier if you did not have to involve them at this early stage.

It is unlikely the house sale funds will fund out. If they do, it will be so far down the road the LA will have have no opinion on whether she was moved to a care home 'too soon', it will be lost in the mists of time and she will have deteriorated significantly.

Don’t choose the most expensive care home in the area, choose one which meets her needs in terms of the care it provides. Even if she does outlive her funds and the LA want to move her, she will at least have had a good chunk of time in the care home of your choosing. But if you choose a moderately priced care home, the LA will in any case struggle to find somewhere else to take her and she’ll remain in her placement (IME).

I would personally NOT involve social services at this stage. They will ask what she wants and take her word for it, so will want her to stay at home with care visits. If you don't believe that is the best option for her, don't involve them.

Thanks everyone. I will look for the Age UK factsheets. @catofglory thanks for taking the time to share your experiences. We are in the process of registering LPA (whilst she still has capacity) so that should be sorted before we need to sell the house etc. Personally, I don't think Mum staying at home with carers visiting would be much use when the time comes that she can't manage alone and one of my concerns has always been that social services will say that's all she needs, so refuse her funding for appropriate residential care. Another reason why I'd rather consider the options before it's an emergency. Very interesting to hear what you say about choosing a mid-priced home. I think there is a very good chance that the funds from sale of her home would run out within a few years (in trying to sort LPA and manage her finances etc I've found out she took out an equity release loan years ago, which will need to be repaid with quite a lot of interest before she gets anything).

There is no way of predicting how long your mum will live, so it is hard to plan, you can only do your best. When you have the LPA you can start to move things forward.

Make sure you get LPA for finance and the separate one for health and well-being.
You can have full control over the decisions about her health and if she needs to go into a care home otherwise a social worker from the LA will have to act on her behalf and that can be protracted and long winded.
My own parents were talked out of doing an LPA for health and well-being (by their solicitor!)so when the decision had to be made for my Dad to go into a care home, because of his dementia, non of the family could make that decision.
Several weeks passed before a social worker got on board to do the correct assessments and agree that it was in his best interest to be in a care home.
It would have been a lot less stressful and quicker if we had the LPA to do this ourselves.

In contrast to that, my stepfather had no LPA and it took just a week for a SW to arrange the move into a dementia care home. Mind you, it was obvious that he was very unsafe and could not be left alone.

It is always worth trying the solution suggested by social services.

I would focus first on getting those LPAs while she has mental capacity to give that, and then on getting a social services care assessment - the latter doesn’t sound urgent yet if I’m honest.

If your mother has capacity to give the LPA, then she may also have capacity to decide to go into a home - someone is going to have to ask her. But I wouldn’t go there yet. Rather let the ASS do their assessment first. And they will do a financial assessment.

As soon as the LPAs are through, get your mother’s agreement if you can to check out the equity release situation and in general to get access to the paperwork and online banking. This can take time, visits to branch etc.

Dementia is the cruellest of diseases but often progresses slowly depending on the type. It sounds too soon for a care home just now but I do think it's better to make the move whilst your Mum is able to understand what is happening. My Mum is well past this and is currently looked after by my Dad, it's a dreadful situation but at this point a move into residential care would probably finish her off as she is so confused. There is a lot of help on the dementia forum https://forum.alzheimers.org.uk/whats-new/posts/4366759/

Thanks everyone. It's definitely too early for residential care right now, but I'm just keen to get an understanding of what would be needed when it does come to that time so that we can plan and make things as easy on Mum (and the rest of the family) as possible. I'm only too aware that the progress of dementia can be unpredictable so although this could be years away things could also get worse quickly. Lots of useful insights and links to other resources here- thank you all

Check out any local resources for people caring for those with dementia - there will be carers groups, there may be a carer’s education course locally, Alzheimer’s Society may have groups. People in these groups are a treasure trove of information and advice.

Care homes are regulated by CQC in England and CIW Wales, sorry unsure re Scotland or Ireland.
Have a look on the website for homes you may be interested in and read the inspection reports. This might help you to see the difference in support and where might suit your Mum.