Best care options if money isn't a barrier

[aginagain]

I hope this doesn't come across as an insensitive post. I've read a lot of posts about situations where decisions about care sadly need to depend on what people can afford or the council is willing to fund, but we find ourselves in a rather different situation. My FIL has dementia (Lewy Body, we think), which is quite up and down but probably now progressing from early to perhaps middle stages. Things at home are getting very difficult - he has times when he is upbeat and almost like his old self, but other times when he is angry and extremely confused. MIL is really struggling now - things between them are very fractious, and she doesn't know what to do for the best. FIL doesn't have any personal care needs yet, but he's got to the stage where he has very little independence and can't be left alone for long at all.

It's clear that they need some support, and we'd like to help them put this in place. We will try to help more where we can, but we've both got full time jobs (often with some weekend working as well), and two kids. The ILs are lucky to be in a position where money isn't a concern - they could pretty much afford whatever arrangement they choose. However, they don't really know what's best. MIL has started to talk about care homes, but we feel it's a bit early to be going down that route. Very easy for us to say of course - but we fear that FIL would probably deteriorate quite quickly in that environment. Besides, I'm not even sure he'd be judged as lacking the capacity to make that deciauon
They've never bought in any help with anything, in spite of having the money - so the whole concept of a cleaner, gardener etc is alien. Our instinct is that primarily what they need is some sort of care for FIL to enable MIL to get a break and get some of her life back. I'm not even sure that a cleaner etc is what she wants - tbh I think what she needs is a break from FIL rather than a break from the house/garden, which she quite enjoys looking after.

We're totally new to all this, so don't really know where to start. Does a part time carer arrangement sound like the best option? Is it still worth a social services needs assessment if they're going to be totally self funding? Are there particular care agencies that are really well thought of, or is it very much a local picture?

Thanks for any advice.

A couple of weeks respite care for FIL in a hotel- like care home?

Ideally one that he could eventually live in when the time is right for him?

He'd get used to the place and they would get to know him.

But would be go? Needs to be sold to him as a holiday/break/convelescent place.

You can ask for an assessment if you want advice. You can look at local carers centre for advice. I think a big care package at home up to a live in care package would be my preference if money was no option, from a good care/nursing agency but it's hard for people to accept 'strangers ' into their home initially

This is such a difficult decision. With my Mum in the end we had full-time live-in care. My preference was as much as possible to keep my parents in their own home and when my Mum was alive to keep them together.

You can either hire through an agency or privately. Agencies are better because they will organise the staff, however, unfortunately, you don't really get a choice as to who does and does not come to your house. With my Mum we went through several agencies, some of the carers were amazing some were terrible.

If you go privately you will be able to find carers that are more suitable for different stages of your FIL's dementia. At this stage, it does sound like he could use a companion-type carer for a few hours each day or one day a week until they used a carer in the house, which would also offer you MIL some respite. However, the disadvantage is, if they can't come, for whatever reason, you don't have anyone to fall back on.

For care, agencies look on the Care Quality Commissions website. All the care agencies in your area and their grading will be listed.

For private care do some research but there are websites where carers can list their services.

Hope this helps, good luck.

A friend has very rich parents. They have an apartment in a care home type setting, like a manor house in acres of gardens. They can buy in as much care as they need, even to have someone take them to a hospital appointment. Food can be brought to them, although they've got their own kitchen as well - and I think there's a restaurant on site too. And there's all sort of organised activities.

As a carer I would say either a private carer for set hours weekly/ daily at the moment.
With the potential of a live in carers once the time comes. There are some good agency's that provide this on 2 week rolling rota basis, so you would have 2 weeks of carer a, 2 weeks of carer b, then back to carer a... and so forth x

My DM died just over a year ago, having had about two months in a fairly expensive care home.

My brother found that he was having to do more and more for her during lockdown and her increasing neediness/increasing disorientation was taking a massive toll on his relationship with her and vice versa. Covid lockdowns made it tricky for her to move, but we are so glad we did.

The transformation in DM for her last few weeks of life was extraordinary. They did so many activities. Admittedly, she had a thorough review of medication with the care home GP (it used to take weeks for her to get an appointment with her old GP) and a lot was tweaked.

My other brother and I suggested the move for respite. We were going to try it for a month.

Your DMiL is probably exhausted and terrified. Let her have a break and reflect on what might work. We used to employ a cleaner through Age UK (so was vetted and they took care if HR aspects).

Putting it bluntly, lots of care homes have space at the moment.

A social services assessment is still worth it if self-funding. Live in care (or hourly care first- up to four hours a day, after that live-in daytime care costs the same) is worth a try, though with both of them in the house it may lead to more fractiousness! I'd suggest care home move might be sensible while he still has capacity to adjust, if he's reasonably willing.

Is he sociable?

A day centre might be suitable or even going to a care home for a few hours/the day. Somewhere he can be with other people/engage/get fed and watered/be safe so MIL has time for herself.

The care home option could introduce him slowly to the idea with having to fully commit.

Respite, where the person with dementia stays away from home for a week or so, isn't always the best option, it depends on the individual.
Some people find the change in routine very upsetting and it then takes them a while to settle down again. Your MIL would then potentially be the one having to deal with the results of that.
So although it's done with good intentions you can find that it doesn't always really help.
DH's grandmother hated respite so she played up before and after, she had mild dementia so she knew what was going to happen when she saw the little suitcase come out. Then there'd be a fortnight or three weeks trying to settle her back at home.

Having said that respite is entirely appropriate for many people and it does give relatives that much needed break, so it really does depend on individual circumstances.

You can have respite care in your home, where a carer will come in so your mum will get a break. This could be a few hours/ day a week

Also worth looking at day centres where FIL could go be day a week. If they go together the first time, it may be something that he enjoys on his own afterwards.

A friend of mind with dementia goes to a paid dementia care centre 2 days a week. A neighbour of mine paid herself for a full time carer which is what I would do first or even a few hours a day to help your Mum.

Lewy body dementia is a particularly difficult disease to care for as it often features very aggressive behaviour and hallucinations. You may find at home care difficult to organise or a high turnover of carers. A friend's dad had to go into a home after he pushed her mum down the stairs when he thought she was a bear attacking him. He had hideous hallucinations several times a day. So whatever you decide make sure you have a back up plan.

Thank you all so much. I think the luxury but semi sheltered apartment idea would actually suit FIL relatively well in some ways, but not so much MIL. They bought a new house only a few months ago, so I don't think she'd consider another move now, plus she's absolutely a mistress of her domain - loves having family to stay, looking after her veg garden etc - and I don't think she'd be willing to give that up.

With the temporary respite care, I can see the benefits, but I'd be worried that FIL would react badly to the adjustment, as change is hard for him to manage now. Also, I think what MIL needs is regular respite so that she can go out and about doing her own thing, and so that they can spend regular time apart and not driving each other crazy, rather than a big one off break. I think it's not just the dementia itself that's making things hard, but the fact that they now spend all their time on top of each other - previously, even in retirement, they very much had their own lives as individuals. The other thing that makes it so hard is the variable nature of how FIL is, which I think is typical of this kind of dementia - one minute he's having a perfectly sensible conversation about the situation in Ukraine, or playing a board game with the kids, and the idea of a care home seems a bit absurd - an hour later, he's not sure who his wife is. It's so hard.

I think either a regular day centre or a regular carer for a few hours a day sounds like a good bet for now. I'll definitely look at the Care Quality Commission and see what I can find. FIL is reasonably sociable, but he usually enjoys seeing people with similar interests or doing a shared hobby (in the past, mostly walking, history, culture etc) - I'm not sure how much he'd like a general 'sit and chat over a cup of tea' type set up. And he'd run a mile from a paint a mug or do some tai chi activity. But I don't really know much about day centres - I think I need to learn more about what they offer.

We need to have a really good chat with MIL about some brought in care, I think. The PP who described her as probably exhausted and terrified is quite right. But she's also fiercely independent, and probably quite apprehensive about having someone else in the house helping out, as a couple of people mentioned. She's the type of person who finds it hard to let you make a cup of tea for her in your own house, so it will be a real challenge. I think we'll have to sell it to him as help for her, and sell it to her as help for him!

@aginagain from your update I would look into having a respite carer come in once a week. You can sell it to him that it's some company/a friend. They will build up a relationship. If you look at a 4-5 hr session once a week it will give MIL enough time to be able to do something (even if just relax) the carer and FIL could go out for walks, pop into town and have a cup of tea, go to a garden centre. Or stay home and play a game/chat whilst MIL is out. It's all about finding the right person.

We were in a similar situation some years ago with an elderly relative who had an Alzheimers diagnosis but was adamant they did not want to move into a care home.

We started by visiting a (very good) care home for the day. The person went with their other half and it was just as if they were going out together for lunch. They got used to the setting and the other people.
Their other half stopped staying and they were happy to spend the day there on their own.
We supplemented this with a private carer at home to help with showering/respite.
Eventually they moved into the care home on a full time basis.

Worked quite well for us. We looked at the full time private care option but eventually decided that the safeguarding in the residential home was more robust - and as their needs increased we would have needed two full time live in people which would have been very expensive.

Individual concerned is now very elderly, mentally completely gone but physically quite well so we may be looking at another five years or so of care home fees.

We had a live in carer for DM for a couple of years, when her husband went into a care home, he was too ill to be looked after at home. He went into a very lovely local BUPA run nursing home in a stately manor overlooking a lake and forest! Lovely care and setting. Super rooms.

DM was difficult. We had some lovely carers (from the local agency). We also had some who were awful, but then DM was awful to them. A lovely Czech lady looked after her for a year, before going back home. It is a very fine balance to having someone in your own home 24/7. DM tended to treat them like servants, which was really awful. But then she had had servants growing up, so I think very much a generational thing.

The last live in carer we had was better, in that she was a strong woman. However, the flip side being, she took over completely, took control of what DM spent, including gifts to GC, and over time DM pretty much gifted her all the nice things in the house. Yes, I am a little bitter about that, can't help it. Some of them were really sentimental, and the carer should have known better. Nothing I can do, it was DM's choice to gift them.

Anyhoooo, eventually that relationship broke down and she joined her husband in his care home. For me, care homes are better as they are better "regulated" and have a more balanced environment. More going on and more oversight because they have more staff.

Very personal view though, and very specific to my DM.

We found the care homes by visiting locally, getting recommendations from friends, and others who had gone through the process.

I am not an expert at all, but I did work in a very posh care home for a while. Two things come to mind. One is that, if money is no barrier, in general, the residents who arrived before a complete crisis point was reached seemed to thrive, in a way that residents who arrived long after they had not been coping at home didn't, because the staff had the opportunity to get to know the person whilst they could still communicate clearly and express their preferences. We had residents who really treated the place like a hotel, enjoying the food and home comforts and coming and going as they pleased, as well as residents who needed more care.

That care home also had supported living apartments in the grounds, and we had one couple where one partner lived in the care home and the other in the apartment but came over to the care home daily for lunch and so on.

I guess I am trying to say that there might be options you are not aware of, whether these are useful now or in the future.

Thanks again. That's a very interesting perspective about moving into a care home before crisis point. I guess I maybe am a bit prejudiced to think of care homes as very much a last resort, which is partly based on the memory of the ghastly one my GM was in. I've just googled a couple of more luxury options, and they do look very different - including one close to where the ILs live, which has both apartments and nursing care. Maybe something to add into the mix.

Do you live in London?

I have this place in mind for when my Mother gets worse. DB is currently living with her, but worries he might burn out. Other DB and I each cover 2 days a week. Unfortunately, DM is currently refusing to accept any help other than her children….🙇‍♀️

They have daycare facilities and will supply help for local people.

www.lovedayandco.com/chelsea-court-place/

It costs a lot, but that is because of the staffing levels and the position.

From experience. If money is really not an option get a full time carer to live in their home. And get it now before you think you really need it. . I would not move your father with dementia. either temporarily or permanently however lovely the place it. I would not separate your parents either. Call it a housekeeper to maintain their dignity. The right person will add years of quality time to their lives.

In terms of helping with FILs dementia I would recommend private carers to enable him to stay at home in his own surroundings for now. Only if MIL can cope with this of course.

Sadly, planning forward care for dementia is so difficult not least because it is impossible to know what form his illness will come to take. For example, if he suffers with seriously challenging behaviour then care options will become much more limited and more expensive.

I worked with people with advanced dementia and their families for over 20 years. Some patients will be able to stay at home, others will need to be in a nursing home for several years. It's so unpredictable.

In your situation, I would follow MILs lead & support her in whatever care decision she makes.

Some care homes these days are really nice. My grandad has just moved to one and my mum found it important to choose somewhere that will take him right through to end of life so that he doesn't have to move again.

I would not separate your parents either

I would advise - never say never to separating your parents. There may come a point (as it did with my parents) that their needs and wants are pretty much diametrically opposed. My Mum was a night time wanderer and having her up and about at night even with a carer on hand was very disruptive for my Dad.

I think a combination of home based support and day centre / out of the home activities for your DF may be a good option, that way your DM can relax at home without having half an ear listening out for your DF - that used to be an issue for my Dad as well.

@aginagain It's not something I have heard talked about much, I guess because many people and families discussing care options are a bit further down the line in terms of care needs? I never discussed with the residents I am thinking of what it was that made them move sooner, when most elderly people seem determined to stay in their own homes as long as this is possible -- and even when it isn't really possible.

It was something a bit more like a non-military version of the Chelsea Pensioners if you have ever come across them. It was really a pleasure to work there, it's a tragedy that that standard of care is out of reach of most people.