Please help me decide what's best

[GraciousMe]

Head spinning a bit 😕

Both parents 90, living independently in an house that needs major work doing. Dad with slowly deteriorating dementia but physically healthy, mum full capacity but more frail. They're coping, just, but really need me more than I can manage. Both adament they don't want to move until they absolutely have to. I think we were all hoping they would manage til one of them passed, and that would trigger the other to move, but it doesn’t seem to be working out that way.

I think it's time now that we know the extent of the work needed to the house, although it relates to part of the house they don't need to live in. I'm stuck knowing what's best though as anticipate one or either, or both, will rapidly decline after any move, so I really only want to see them have to move once. It's also a house that will likely be tricky to sell easily. It's a sort of marmite house. I don't know whether to leave the section of the house that needs work to deteriorate and just sell, or spend what savings they have doing that up before selling. The work is on a part of the house they don't need to live in (but needs a new roof).

Mum has savings so not eligible for state support but is dependent on Dad's pension for income. So if he goes first, she needs to be somewhere she can afford independently.

The dilemma is whether to put dad into residential care now and move mum into a warden assisted place nearby. Or move them both into warden assisted, with the likelihood dad will need to move again fairly soon into residential. Neither really want to move closer to me but stay in their home town of 60 years. As I'm not a homeowner myself and have health concerns of my own, I'm feeling overwhelmed by the financial decisions needed. I've no idea how to make the decisions without knowing how long the sale will take or how much it will make. Equally, I don't know how to move them both together until the house is sold. Where can I go for advice?

It's good that you have a good relationship with your mother and she's happy to listen to you.

In terms of the house, realistically your parents are 90, they are unlikely to live long enough to benefit from an increase in value. And it may only increase by the amount spent on it, so it would not be a real increase anyway. They would find it stressful living there while noisy work goes on, and it could take well over a year for work to be completed and the house sold, by which point they may no longer be around. So I would be wary about doing major works unless vital to their own comfort.

You say they are resistant to the idea of a care home. Unless they do move to a care home, how much the house is worth is irrelevant as it won't be used for their care - they are living in it.

I agree with a lot of what has been said above.

One thing- and it’s a practical step so hopefully won’t cause issue with intransigent DPs - can you get a professional builder in to assess if the roof issues are likely to cause any structural damage to the rest of the house and potentially make it unliveable and also how much the repairs would cost and how long they would take. I wouldn’t advocate getting work done unless it’s absolutely necessary - my DPs are a similar age both with forms of dementia and desperately could do with the bathroom being changed into a wetroom which would only take a couple of days at most, but I genuinely don’t think they could cope with that.

Presumably as your DF has dementia and is at home they should have social worker involved, they may be helpful on next steps and/or speak to his doctor. It sounds as if they should both be eligible for attendance allowance if you fill in the tedious form, which would enable them to pay for some care on a regular basis.

Honestly I think the time for either of them to move except to a care or nursing home has passed. They have had long lives and it sounds like you have your own health issues. I am an only DC as well and what I have learned is often the right thing is to do less. They may not be living a warm and comfortable life as they could be, but provided their basic needs are being met - food, water, heat - then sometimes you just have to step away from the bigger questions and let them resolve themselves.

Why don’t you move the both into residential so they can stay together? Some places even have double rooms or adjoining rooms so they can share

You have to tailor your strategy to the person you are dealing with, and what you can do depends on you at least having financial LPA so you can access finances for care (if they can self fund).
I completely agree with this @catofglory .
Personalities , circumstances vary a great deal .

Been through this too. Uncle left his home easily enough but wanted it preserved as is. Lack of occupation and no heating because he didn't want to pay has left it in a bad shape. If we had to sell it will be worth a lot less than he thinks . And I hate the thought of moving him again as it took ages to settle him. Previously he had stayed short periods in relatives homes but was very oppositional . Drinking was a huge problem . He wanted to drink whiskey but hardly ate . Then he would drink too much and become a nasty belligerent drunk . Hard to put up with someone slagging you off in your home . And where do you draw the line letting them do harmful things just because you don't want to force anything . Maybe if he had been a father but he was a single uncle with no children .

At least your mother is willing to talk about it OP . Get some ideas about costs to think about . Unfortunately at 90 an event can occur and there will be no time to plan . I used to pray that Uncle would die in his bed . Fortunately he only spent a short time in hospital before he passed away and he was unaware of it .

I'm so glad I posted. Thank you so much for all the replies, each one has been really helpful. I guess I'm also wondering how much my mum should hang on to her savings (for if dad dies first) or spend on making the rest of the time they have at home together, in as greater comfort as possible, with as much care as they need going in. She is also worried about depreciation of the house due to the work needed, meaning dad may not get the best care they can afford when they sell. My feeling is I want HER to be as comfortable as she can now, as she's shouldering the greatest burden right now in looking after him. I seem to just go round in circles!

It depends on the residential care home. My best friend’s DM is in a home but has dementia. She is always got out of her room for activities and recently into the dining room as she wasn’t eating in her room.

So when you say there’s a lot she can do, what do you suggest ? OP has explained her parents are resistant to her suggestions. Presumably you have something else in mind that you think she should be doing ?

@GraciousMe the other thing I would say, based on your thread title. At this stage there is often no good option, only a least bad one.
Your DPs had the opportunity when they were younger and able to move to a more suitable property for their old age. They chose not to take that decision at that point, obviously you won’t abandon them but it’s not on you now to make Hobson’s choice for your DPs, or make yourself ill through doing too much caring and worrying.

I don’t know what stage your DF is at or if they have any existing carers or indeed cleaners, or are claiming attendance allowance. If not and your DF is still capable of living at home with some support, that’s the route I would encourage them to go down for now with input from social care.

I am not saying it’s a great option.It will probably require some of your time to get it set up, but at least you will know there is more frequent eyes on them and it will quickly determine if your DF can still live at home. Obviously he will deteriorate as that’s the nature of dementia, but sometimes a holding pattern until things deteriorate is the least worst option for everyone.

Own option to get more informed on the current situation with the house is to get a survey done.

They’re more commonly done by buyers, but can be done for other reasons. If you have a chat with the surveyor and explain the context they can give you expert advice on options around leaving things as they are vs repairs and future valuations.

Needs and support wise - get in touch with local adult care services to understand options and availability. Both council and private. Some supported living now have options for private rental. Some council sheltered housing is under occupied. So may be options you haven’t thought of.

My attitude is based on 4 elderly relatives, my parents and ILs. MIL was fine until the day she had a stroke that left her severely disabled. FIL was determined to care for her at home and nothing anyone could say would persuade him otherwise until a few weeks before he died despite his own health problems. The anger any suggestion otherwise triggered was enough to make several people leave the house in fear of violence.
My parents had the opportunity to move to an assisted flat when dad had mobility issues but mum was adamant it wasn't happening and dad would never, ever go against her wishes. Even getting a walk in shower was a fight as she preferred to have a bath. By the time dad had died and mum was lonely she was well into Alzheimer's and it was too late. Now she would undoubtedly be happier in the right care home, and when she's distressed about something she'll agree but the next day she has completely forgotten and can't understand why you raise the subject as "I manage fine, you just want my money". Also she won't consider leaving the very small town she lives in and the only care home there is shit. She's convinced her friends will visit frequently but they are all dead or in poor health. I've taken her to visit much better homes but she's not having it, she can't see the appalling standard of care and dreary activities.

Thank you. Yes it is easy to say they could have moved earlier. For reasons I dont want to divulge I can assure you it wasn't really through choice. I can't really explain more than that, but I do have great empathy for their circumstances.

Can you look at Home Instead or other carers coming in, rather than moving them, and see how this works out? My Mum strongly resisted carers, cleaners or anyone, and it would have made her life so much better. In the end, she had a stroke, fell down the steps in the garden and died in hospital a few weeks later. But her last couple of years would have been made much more comfortable if she had accepted a little help. Re the roof, it might be that a patch up job could be done as a temporary measure. Do you have anyone you could ask?

I’m in my late 50s with DM in early 80s and DF now in early 90s.

My DM’s denial of DF’s progressing dementia over the past 12 years has made things much more difficult than they needed to be. It’s impossible to persuade someone to do anything they simply deny the need for or benefit of. One example is that nearly 4 years ago, my DF who by then had been diagnosed with Alzheimer’s, lost the ability to stand or walk. He was in hospital for a couple of weeks then discharged to a rehabilitation hospital where it very quickly was confirmed that this was not a physical issue that could be helped with physio. My DM refused to accept this, dodged meetings with staff, and when they did speak to her simply pretended the conversation hadn’t happened. I caught her out on that one time I was visiting DF with her and a nurse cornered her to ask what she was going to do based on their last couple of conversations. It was blindingly obvious to everyone that my DF needed to go into a nursing home. My DM has POA for him and she was angered and insulted by the suggestion. She insisted on getting him home with a care package and then it was simply a matter of waiting for the inevitable crisis. Actually, after 5 weeks of the shitshow that my DM engineered I went to their GP, explained the situation and asked that they make a home visit. GP was out within the hour and DF was taken back to hospital in an ambulance. A shorter stay in hospital then back to the rehab hospital where DM again played hide and seek with the staff before eventually with much intervention from DSis and I, he went into a nursing home.

And there are many more examples I could give her deliberately making life much harder for herself and my DF while DSis and I pick up the pieces.

I am determined to streamline and simplify my life, and put my wishes in writing so my DS doesn’t have the same experience.

@Seeingadistance. The whole situation sounds utterly ghastly. It much have been very hard to see and manage.

There are always lots of posts on here about how we will all avoid this but, sadly, I don’t think it is that easy. What if your instructions to your son are “I want to stay at home no matter what”. That won’t help him much. And in 15 years that might be what you decide to write.

My father in middle age was full of distain for physical weakness and aging in others - one evening in their early 60s my mother made a comment about “middle aged people like us and he snapped “Speak for yourself”. She laughed and said something on the lines of “Well, if we aren’t middle aged at 62 we would have to heading towards elderly” and he was so furious I thought he might have a stroke - and was always full of “Oh I’ll just shoot myself if I get chronically ill or incapable”.

But he ended his life with Parkinsons and dementia, shuffling around the house as a shadow of himself, consuming in tending him the last mobile years of the wife he had left for not keeping up with his self-identified spritleliness. If I could have shown him at 80 to his 60 year old self, he would have been appalled but the moment to in fact shoot himself went undetected in the steady erosion of self.

So do you follow the wishes of the person as they originally were, or as they are now? Because they may well be very different wishes.