Re Kilo’s experience of visiting carers, when my mother needed help to remain in her own flat we got carers from a company called Home Instead and they were both very good and cheaper than Kilo’s experience, although still quite expensive so not an option for everyone.

As for the right to a dignified death, I agree with this. I’ve just had my first Mothers Day without a mother and the thing that made me really sad was thinking of all the things that we’d told her about in her last three years that she never understood or remembered. Those years were an utter waste of so many people’s time and care and so much money and resources. She had no quality of life for herself whatsoever despite being in a care home that we could not fault, and a huge negative effect on so many other people’s lives. At her funeral many people said ‘of course, we really lost her some years ago’. My siblings and I are determined not to put our families through a similar experience – time will tell how that works out.

Currently having this issue with the in-laws. After my wife died last year I persuaded them to update wills, power of attorney etc. which was good timing. Mother in law fell 5 weeks ago, fractured her femur then proceeded to have two cardiac arrests on the operating table when they went to pin it. She’s on the mend now but the reality of them moving back to their house is very slim. MIL wasn’t that mobile beforehand, eyesight going but brain okay. FIL physically okay (as much as it can be at 86) but is very deaf and dementia is kicking in and can’t live on his own. It’s really going to throw him moving him out of the house but I think it’s a tough decision we will have to make. In reality a care home/sheltered housing was as case of when not if and this will just accelerate the process.

I’m having a break back in the UK from looking after FIL whilst MIL is in a recovery home and cousins are holding the fort. I’d already recovered a .22 rifle (this is Texas by the way) as it isn’t safe for it to be around FIL given the confusion he can often have, but the cousins have now found a .38 which was loaded! I really do prefer UK gun laws.

And lastly, having cared for my wife, been through it with my dad, now helping the in-laws, there maybe times when it feels selfish to do your own thing, but you have to. If you don’t look after yourself you aren’t much good to anyone.

One thing that has occurred to me – we are short of house space, but not garden space. As a half-way house between staying in their own house and moving into care could we put them in a posh-shed? They could use facilities in house while they are still mobile.

You would need planning permission to build what is in essence a house – certainly a residential dwelling – and it would need all sorts of standards / utilities and so on. Far from impossible, it’s just not easy or cheap.

She had no quality of life for herself whatsoever despite being in a care home that we could not fault, and a huge negative effect on so many other people’s lives. At her funeral many people said ‘of course, we really lost her some years ago’.

This but for my grandma. She had no clue who her husband of 40+ years was, only that he was familiar because he came to visit twice a day (a huge burden on him). She had no idea who we were, could barely speak and her daily routine was being washed and dressed by someone then sitting in an armchair in a room with a dozen other old folk then being undressed and washed by someone, then being put to bed.

She was unable to function in any normal way.

One thing that has occurred to me – we are short of house space, but not garden space. As a half-way house between staying in their own house and moving into care could we put them in a posh-shed? They could use facilities in house while they are still mobile.

Unless you are talking about a really serious “posh-shed” I think its a poor solution.  Not sure what facilities you were not planning to include – but toilets would be essential.   Nobody wants to walk outside for a pee at 3am in the rain, but certainly not in your 80s.   If you were building something then equipping it with a well-designed, old-person-friendly shower would make sense anyway unless you happen to have such facilities on the ground floor of your house.  Old people get cold – so you’d want it very well insulated and heated.  If they are physically and mentally able they should be able to cook / make tea / warm food (even if they don’t cook whole meals) – so you end up with a little pantry area – because when its cold, dark and icy outside its not great for them to come back and forth to the main house for a cuppa.   If the mind starts to go you may not want them with those facilities for safety, and you may not want them able to wander away easily.  So then the shed starts to sound like a cell.  If physicality gets them first then one or both will be very trapped in a small space. That can’t be good for their minds.

I think in terms of location, if you are physically mobile and mentally fit, is what do they do, who do they interact with, what facilities are close by. if they don’t (or shouldn’t) drive – which location has good public transport, which is best for the Dr, pharmacist, shop etc which is what keeps elderly people “going” longer.  Once they can’t leave the house (even if physically they could buy practically its just too complex) then it seems to be a downward slide.

@Poly – you make a great point about the PoA. If the recipient doesn’t want it, for whatever reason, they aren’t getting it.

However, I respectfully disagree with “People always say its a nightmare if there is no POA. I’m not sure its quite as bad as is made out.”
It took a year to work through the Guardianship application process, involving lawyers and government. Once granted, you are overseen and need to regularly provide accounts for audit by government – regarding both financial and welfare guardian activities. And that’s just the guardianship side. With no PoA, you need to jump through hoops for every provider of every service your relative consumes – health, council, utilities, taxes, driving licenses, tv license, broadband, phone, banks, **** store loyalty cards etc etc etc etc.
As you pointed out yourself, you have never been there, so you don’t know.

s there a country that you think has “got it right”? (Genuine question)

No idea. I’ve only had to deal with it in Scotland. Why did you put “got it right” in quotes, out of interest?

This can be a minefield and like all minefields you need to tread carefully.

I do this sort of stuff for a living, but most of the experience that I use in my job comes from going through this with my Dad and my Father in law.

Where do you start the conversations? Do your own planning first, it will protect you and your family, and it will give you real insight that you can go to your parents with. It is much easier to start the conversation with me and my wife have just done our estate planning and we found out these things that will be relevant to you mum and dad.

What about care? This one needs a bit of research, find out about the care homes close to you – the CQC has a good list https://www.cqc.org.uk/care-services/find-care-home which tells you how they are rated. Then visit the good ones and find one that you feel comfortable with and you think your parents will be comfortable with. Once you have done this book them in for a week (the care home will call it respite care) you can dress it up as a holiday, rest, whatever will work for your parents. Once they have experienced living in a care home, even for a short while, it will be totally demystified. You will be amazed how many people love the experience and it accelerates their desire to move in.
If they don’t need that level of care then the assisted living space can be a bit of a nightmare. Be very wary of buying into a McCarthy and Stone type place. They are notoriously difficult to resell after death and continue to accumulate service charges until the sale we have one that has been on the market for over 5 years and is accumulating service charges at over £6k per year. Rental is definitely the best option in this space.

Essentials – Lasting Power of Attorney and an up to date Will that protects each spouses assets in the event that one dies and the other needs care. This will at least leave some inheritance for the family (I know the OP says you are not overly worried about that). Also get pre paid funeral plans, either from the Co-op or Dignity or someone who is reputable. It is better to pay for the funeral from pre care costs rather than try and scrape the money together after care has diminished the available pot.

Finally, take professional advice before accepting any care solutions that are presented by the Local Authority, they are normally driven by cost. Make sure that you are claiming Attendance Allowance for both parents, it is not means tested and is designed to help with day to day needs.

Hope that helps. If you need anything more you can PM me and I will help if I can.

Regards
Nick.

POA does allow you to help, especially sorting bills – this is probably the main thing as your folks get less able. Even with the Health POA, MIL understood we’d do nothing that she didn’t want – it was more so we had some involvement and control over her care, and we knew about her various health conditions. The POA for Finances was used all the time. The POA for Health was only used under agreement with all the family about withdrawing intervention during her last days. She’d gone into Hospital feeling unwell (suspected mini-stroke), then perked up, but by the next day was un-responsive – it was at this point we decided that intervention should stop. Still took a week for her to pass.

@NJA – thanks so much for that incredibly informative post.

We’re in the situation where moving to the next stage is looking more and more inevitable but we just don’t know where to start. That helps enormously. We’ve already got PoA in place, but after that… haven’t got a clue

We want to get something now, while they’re in a position to make choices for themselves, before we end up in an emergency situation with far less options available

You will be amazed how many people love the experience and it accelerates their desire to move in.

This was our experience with my gran. She insisted on staying in her (large, completely unsuitable) house and point blank refused to even countenance going ‘into care’. It reached the point where my mum and her sisters just couldn’t cope with her constant needs, demands and expectations so she finally tried somewhere. The place she went into was really nice and she absolutely loved it once she was there. This was a bit galling for everyone as she then kept saying she wished she’d done it years ago, having stubbornly spent those years absolutely refusing to even entertain the idea, and having everyone else running around after her 24/7 instead.

I’m sure thats quite common, and equally as annoying for all involved

NJA – I too would like to thank you for such good advice.
My 83 yr old mother has only just agreed to LPoA as she wouldn’t listen to advice before, hopefully this isn’t being put into place too late. She won’t even have a cleaner and the house is dirty (I’ve offered many times, but she refuses help).
She also has said, she will never go into a home. It will be left mainly to my sister and myself to look after her. Luckily my sister has time and they get on really well.
This fills me with dread as she’s accused me of various things in the past and I now struggle with anxiety because of what has gone on.
I’ve offered to cook meals for her, to clean, to take her out, to shop etc but she won’t accept my help, so I’m painted as some bad child.

Hopefully her remaining years will be happy and healthy.

@NJA – another thanks from me, very useful.

It will be left mainly to my sister and myself to look after her. Luckily my sister has time and they get on really well.

In our case it would be mainly me and my wife. But mostly me as they are my parents after all.

My brother – he’s estranged. Lives off the social, has loads of free time and also lives in the same village as my parents. But he never goes near, even during Covid he never popped round to see how they were doing.

My sister – lives an hour and a half away. A cynical person may say that’s very convenient – although she is ‘very grateful’ for the help I give my parents! She doesn’t work either. 🙂

People always say its a nightmare if there is no POA. I’m not sure its quite as bad as is made out. Social Work and the Courts are usually very keen to find someone sensible and appropriate to take on the role/responsibility

I can assure you that waiting for the courts to work through it while being unable to access funds to pay the household bills etc is no fun. It is not a quick process.

Virtual hugs to all who are going through this. I agree it’s hard to keep giving your time to help others, OP and I are similar age and my eldest is his daughters age, so the treadmill of kid responsibilities becoming parent and in law responsibilities can feel never ending, especially if partners or kids also require some support as well.

Don’t be afraid to take time and support for yourselves. If your parents need to go somewhere for respite while you get a break, it may get them thinking about things in a different way too.

Another thank you to NJA, especially regarding paying for a funeral plan.

I’d also advise against housing ageing parents in a posh shed, I moved to a larger house so my dad could move in with me for what turned out to be the last 5yrs of his life, despite being totally capable & not needing any sort of care in that time, it was tough & certainly not recommended unless you get on really well with your parents – had echos of bunnyhops experience & accused of various of misdeeds ☹️

We prepaid MIL’s plan, as you’ll unfortunately need to find the cash for one, as all their assets are frozen until probate is agreed. Took about 8 months to get probate. We still had to fund the wake etc and anything not covered by the funeral plan.

That is if they have enough funds to prepay it – looking at £3k plus.

This is a really useful thread with some very good advice for those who care about their families. Thanks for posting OP and for those that replied. I’m heading rapidly in this direction too and there a couple of points I’d not even thought about highlighted here.

We prepaid MIL’s plan, as you’ll unfortunately need to find the cash for one, as all their assets are frozen until probate is agreed

In England this is just not true, funeral costs can be paid from the estate before probate is granted. I’m just about to apply for probate for my friend, his funeral was in January & paid for by his bank in January.

We moved in to care for my FIL a few years back. My wife gave up a decent job, I continued to work plus helped when home. After a year we admitted defeat, and arranged 24/7 care at his house, funded by savings and equity release. One of the hardest things was the response from the rest of the family (all local to him, we weren’t). Because we’d rented our place out to move in, accusations of us being on the make. Got very silly.

Anyway, my dad is now in a similar situation. Was diagnosed with dementia in Jan, ended up in hospital as unable to care for himself properly, now back home with 3 carer visits a day. LPA invoked, attendance allowance applied for (you can do it on their behalf if you have LPA), car sold. Looking into supported housing options as a next step – there are some council-subsidised ones in his village.

They won’t listen to those closest but may listen to exactly the same message from others.

This is very true. His carer is excellent, and we find if we speak to her, she’ll mention something and he’ll accept it. If we said the same thing, he’d resist.

Hope it works out for you, looking after yourself is just as important.

If you were building something then equipping it with a well-designed, old-person-friendly shower would make sense anyway unless you happen to have such facilities on the ground floor of your house.

Another ‘PITA’ to add, if you create a standalone ‘annex’ either within your current property or in its grounds be aware that an additional Council Tax will be payable – standalone, has its own kitchen & bathroom facilities.

@Dickyboy, thanks for the confirmation about the funeral costs. We needed to ‘lose’ some of MIL’s savings so it was the correct thing to do, after she initially refused a plan. It’s the ‘extras’ – e.g. wake, that we had to fund until probate came through.

@franciscobegbie

It took a year to work through the Guardianship application process, involving lawyers and government.

I’m not suggesting for a second that it is fast or painless.  I wonder if that is a covid effect / backlog or if they’ve always been slow?  Did the lawyers imply it was always like this and always the OPG holding things up?

Once granted, you are overseen and need to regularly provide accounts for audit by government – regarding both financial and welfare guardian activities.

I actually think that is a good thing.  The PoA process seems to leave a massive potential for either wilful or feckless misuse of funds or poor provision of welfare.  Just because someone has PoA doesn’t mean they use it wisely.  Even just knowing someone might be watching is enough to make most people think carefully.

And that’s just the guardianship side. With no PoA, you need to jump through hoops for every provider of every service your relative consumes – health, council, utilities, taxes, driving licenses, tv license, broadband, phone, banks, **** store loyalty cards etc etc etc etc.

But for a lot of stuff you don’t actually need guardianship.  An intervention order might be sufficient, and for some of that stuff if you can deal electronically with them there’s no real need for them to even know who is clicking the mouse, and some of it will sort itself out if you do nothing (like driving license etc).  I’ve dealt with a lot of those people after a death (without even being the next of kin / administrator – just as a favour) and half the people you listed are quite helpful so long as you aren’t trying to get cash out them.    Obviously a PoA doe have some advantages but everyone here writes you MUST get a PoA ASAP as soon as anyone here even starts a thread like this – and the reality is there is an alternative process if it is needed.  It might be better to invest the time and emotion in getting a sensible plan rather than fighting to get a PoA in place because it seems that a PoA could be about making your life easier not making the decisions easier for the elderly person…

s there a country that you think has “got it right”? (Genuine question)

No idea. I’ve only had to deal with it in Scotland. Why did you put “got it right” in quotes, out of interest?

I put “got it right” in quotes to show it was a figure of speech and that likely there is a large degree of personal opinion about what “right” would look like, rather than necessarily trying to worry about the fine details of what “right” might mean I was genuinely interested in the countries you implied were doing a much better job of elderly care.  I had, perhaps wrongly, inferred that your statement that “It really is a shite state of affairs, how poor the provision of elderly care and support is in this country.“ [my bold], that you thought some other country(ies) were doing a better job of it.  I’ve not had any direct experience in other countries but anecdotally it seems that in countries which seem to do a better job of looking after the old, it is very often their families that do it.  I’m not saying that is good, but this can’t be a uniquely British problem?

Thanks for all for wisdom here 🙏 and my thoughts for anyone in similar situations. I’m right in the thick of things at the moment. Thanks for the reminder to take time for yourself and those around you. Feel like I’ve not been a husband/father this week to my two wee girls with one parent at home with early dementia and the other in hospital. Work/Hospital/Home Visit/home to (barely) sleep then rinse and repeat for the last 8 days, just firefighting and not sorting the list of things I need to get my head around.

POAs in place, but a long list of things to sort immediately. How easy is it to action the POA with banks etc? Do they need original copies in the post? Certified copies?

Do they have any care needs? Or are they managing on their own?

Do they need original copies in the post? Certified copies?

You can provide them online now. When you get the LPA, there’s instructions on setting up an account. Once done, you can generate a code that’s valid for 30 days you give them. Did it today for the DWP.

Poly,

Every case is so different from every other.

They are fine, no health issues, then something like dementia ever so slowly kicks in.

You Don’t notice, they get more awkward, more defensive, more isolated.

And ooops it’s too late. You have no authority or agreement to anything in their care or finance.

You can always take the hard-nosed view and shrug and leave them to it if they are too stupid and stubborn to allow for help. While they are competent to make decisions, they are allowed to make poor ones (and not planning for a decline in abilities is such a choice). It’s their funeral after all.