AIBU to ask what you intend to do with respect to caring for elderly parents?

[Timeforteaplease]

I'm in my 50s and my DM (in her late 70s) has always said that she does not expect us to care for her. She didn't care for her own parents; they went into a home. But as she gets older, I think (but do not know for sure) that she is changing her mind and would like to move in if/when something goes wrong. I am guessing that she will not want to spend her savings on a care home.
Do we wait for a crisis to happen or talk to her in advance?

What is the norm for care these days?
For background DH and I both work full time, me from the home - but my job is still full time/high pressure.
Looking for good advice from people who have been through this.

Whilst I'm happy to help out with meals/appointments etc I have no intention of moving either of my parents in. We've discussed it and neither of them expect it either, both are quite happy to go into a care home if the time comes (and I feel exactly the same about my own old age)

I hate to burst anyone's bubble but to people saying "he/she/they can go into a home and the state will pay." It's not that easy, Social Services won't willingly put them in a home till there is no alternative. Leaving someone with 3 or 4 15 or 30 minute visits a day when they really need 24 hr care seems to be quite acceptable.

An exhausted and frustrated niece to someone in their 80s who doesn't recognise they aren't coping and Social Services quite happy to accept that. As the person who gets the phone calls, organises the dr visits, shopping, carers etc etc etc I disagree but apparently it doesn't warrant residential care. Her neighbours, who are being driven to distraction, don't agree either but how do you force them to pay?

I know what you mean. But I have no money and neither do my parents. My parents live many miles away. So we will simply have to manage as best as we can.

I need to have this conversation with my mum but do not know how to even start it.

I know I do not want not want to have make decisions at her bedside when she is in crisis.
I would like her to look at a few homes now so we know which she likes and which she doesn't. Is that realistic? Or morbid?

My mother has sold her house and is using the money to build a granny annex on our land. Close to the house but not attached so everyone has their own space and more importantly head space. The rest of the money, as it is much cheaper to build than buy here, is being saved for any potential care needed in the future. This way we can help her with anything she needs without it being a massive strain on us. For example shopping/bills/matenance etc. The fact that she is building also means she can make it very practical house for a possibly disabled person to live in/be cared for in.
As far as talking about personal boundaries etc we had a honest talk with her before about what she wanted for the future and then discussed how we could fit than in with our lives so everyone was happy. It may well turn out that she also has no interest in moving in, my mother certainly didn't want to, if that's the case problem solved. If not it may be a bit awkward but it is definitely best to set clear boundaries in place from the start. Hopefully if she knows you love and care for her she will not take it as an insult.

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I personally think it is a good idea to have these conversations early. You don't have to dictate to her at all just ask a questions about what she is thinking and deal with differences as/if they arise. The longer you wait to have the talk, the more you will be worrying about a problem that may not exist. She may also still be thinking home?

People who say 'I will look after my parents, they'll never go into a home' make me as they are usually people who haven't experienced what it's really like dealing with someone with dementia etc. If my mother (Parkinson's, dementia) had moved in with me, I would have to stop working, and wouldn't be able to leave the house even for an hour without arranging someone else to look after her. There's no way I could look after a small child at the same time (she went into a home before I had DC), so no children for me. She had started wandering so I'd worry about her leaving the house at night. I'd need to help her wash and dress, or pay for carers to come in to do those tasks. And the way her health has deteriorated means she would probably end up in a home anyway.

Rant over.

My siblings and I ended up making these decisions in a crisis, so you are sensible to want to plan ahead OP. Perhaps the first thing would be to discuss downsizing if her current home isn't suitable (eg: stairs, large garden, lots of maintenance needed, no downstairs toilet). See how she responds to that.

My advice would be don't leave it until it becomes a crisis. My previously fit and healthy father died unexpectedly leaving my mother home alone and not coping. She was adamant she wouldn't go into a home or sheltered accommodation but was struggling on her own and we lived two hours away. The situation was resolved rather like @greeeen did, we had an annex built onto our house. I am married and have two children. She also helped us financially. My mother'a health is very poor and we have carers in three times a day to look after her. I work part time and take care of her in between. It really isn't easy. I'm in my 50s and she is in her late 80s. Friends say how well we've done and how we got things sorted. But it is difficult. It is a permanent drain and none of us are particularly happy. I know she feels very lonely but equally I find it hard to spend as much time with her as she would like. She is quite a difficult person, very demanding at times but at other times very kind. I feel my life isn't my own and I'm permanently busying about with her food, laundry, medication, healthcare. She is very disabled so not independent at all. Her television blares loudly all afternoon and evening. My own health is now suffering. I'm tired out and stressed by it all. It is like living with an enormous stroppy toddler. I find it exhausting to have 24-hour responsibility for her even though she is not that difficult. Feel sorry for her but resent her all at the same time. I just want my life back.

I've always joked about putting them in a care home. They are fine with this and wouldn't expect otherwise.

The fact your mum didn't with her own mum should make you feel no guilt at all.

Make plans but say that you want you both to enjoy and preserve your good relationship as she gets older and the best way to do that is to be around for the companionship and organising but not be involved in the stresses and frustrations of the actual caring.

Pennina

Hearing all your stories is just so bloody depressing.

If your DP would like to remain in their own home as long as possible then it's important to make it fit for old age now as "ability to live in one's home" can be much improved by accessible bathing facilities or no stairs. This may mean changing fittings, but it may require moving to a flat too if they currently live in a house with lots of stairs.

I'm lucky in that my family have all learnt the lesson from the early onset Parkinsons of my grandfather and now everyone is putting in plans to avoid a repeat. Sad but true.

I don't think any council had the authority to see a house if there's a spouse or any one else living in it can they

no but they can put a charge on it so when you come to sell, the council gets half (or half what's left after the £23,000).

If you part-own a house with your spouse and I suspect the majority do in equal shares, the council will take the view that half the house belongs to the spouse with dementia/other care needs and so that half is taken towards the fees. They won't evict the other spouse, but when they come to move house or it is sold by an executor, the council will get its share. I thought it was common for councils to take charges over properties to pay for fees - either in this sort of case or where the house just can't be sold quickly.

And yes, I learnt from my father having Parkinsons. My mum lives in a bungalow and already has things like a walk in shower - currently she is fairly fit except for a back problem but at least she is in a sensible home with no stairs. She is in a village though so ultimately it would be good for her to move to a flat in a town with good public transport.

Last year we did an LPA so we have that in place if we need it in future. I was glad that I had an enduring power of attorney for my father.

Looking after an elderly adult with dementia is far harder than looking after a small child. Sometimes I think people who talk about looking after elderly relatives imagine making their meals, chatting to them and maybe helping them dress and undress, And are clueless about the realities for many carers

The other thing about living with severe dementia is that people can become very aggressive and unpleasant. They might suddenly start saying things that they would NEVER have said before, generally being horrible to you, or become so very frightened that they become violent.

Looking after someone who is not grateful, and may hurt you is a huge task and 100% a team effort. Doing it alone is too much to ask of any carer.

We help look after an elderly relative and the admin side alone is huge. There is no way we could manage physical care, and because dementia is involved the relative loves to see our small children for example but talks about wanting to kill themself, gets distressed and cries in front of them. Other relatives won't visit them because they're rude.

It's hard. Currently my parents have suggested they will downsize but only 'when necessary' which is not ideal really.

I agree Whirlwind. People talk about 'people with dementia' loving looking at photos, talking about old times, singing songs, lighting up when they see children. My mum doesn't talk much at all now, and at various stages has lashed out at ds, shouted a lot at him, spat food/drink, let food just drop out of her mouth if she didn't like it, flicked it with her fork and worse. Fortunatly right now she is reasonably affectionate to my dad who she may think is her dad (she was saying this when she had more words), but we are as interesting as rocks to her.
Dad 'only' has early stage dementia and 101 medical problems, but he is totally and utterly self centered so although I have to speak to him at least once a day, he has zero interest in why I might not have been available to speak to him.
Its bloody hard if you do any caring at all tbh, and can also make you very, very cynical very quickly as you see all their friends, and most of your family evaporate away. And not even your friends will talk about your parents dementia as its far too scary to contemplate.

For anyone dealing with these issues, theres a massively supportive MN Elderly Parents area. Without them, I honestly don't know how I'd manage

Having gone through the system with DM I'd suggest practical measures asap if your DP need to go into a care home. Get a good solicitor to get you Lasting Power of Attourney (has to be with DP consent) so you have control of finances and/ or health and welfare. My DM has dementia and after a VERY bad patch SS wanted her to go to a care home for her own safety. Basically they pay for first 12 weeks then you borrow the money from them until you can sell house and pay back but when they found I didn't have an LPA they refused funding after 12 weeks and said I would have to find a home that would let her stay for free until I sold the house and could pay the fees! You can imagine the quality of care she would have received?

I've never been so upset and bloody furious in my life and now my DH and I live at DM's house. DM has three carers a day partly funded by SS, we do shopping/cleaning/gardening. It's not easy but I feel SS left me with no choice- strangely enough now they don't get in contact at all so obviously they have what they wanted..

My elderly Aunt had dementia before she died. She would hit out, spit, swear, and pee all over the place. She took off incontinent pants to do so. I still remember when she had to go into hospital, her spitting at and trying to hit the ambulance men. Not a sweet old lady at all. The only saving grace is she was short and petite. If my DF had dementia and acted the same way it would be very very scary.

My parents and in laws are all in their late 70s now, so I know we have this to come. My parents live about 90 mins drive away, my in laws a bit further but are planning to move closer to us.

I don't want any of them to move in with us tbh. As others have said, I'm happy to visit and help out, but not to become a carer. I feel that DH and I have enough on our plates with work and three primary age DC, although I guess that by the time this happens, the DC will be older so I might feel differently.

My mum has always said she doesn't expect me and my brother to care for her and wants us to put her in a home. Hopefully that will make it easier if the time comes.

I have no problem with their assets being used to pay for care homes if necessary. I don't believe it's right to expect the state to pay if the person can afford it.

I have a plan.
If the weak heart and dodgy brain don't get me, I'm going to starve myself to death. It will take a few weeks but it is possible. I'll be doing this as soon as I become incapable of managing at home or I'm told I have an incurable.

I tried to pursaude my DParents to move to retirement accomodation near to me whilst they were still able to. They wouldn't because they didn't want the upheaval and inconvenience of moving! Believe me that would have been nothing compared to the inconvenience they caused me and DBs when 'fit and healthy' DF dropped down dead suddenly one day, leaving DM (who was in poor health and for whom DF was carer) on her own with none of us living nearer that 75 miles away

I am in this situation now - BIG BLUE BUS. I have two dc and a demanding toddler - I am a sahm and already crawling to the finish line of school trying to hold onto my sanity and I have seriously ill DF hundreds of miles away, turned down offers, help to move over the years, slowly mulling over ideas until we have ended up with him unable to clean himself or his flat, and no one to do it. I think its mindbogglingly stupid and selfish and its hard to have good feelings for him. I am due to visit soon, but am not sure if we can even do that as the flat is apparently so awful.

Yet - in this time DH elderly GM has sold her house - got loads of spends - and is in a lovely safe supported living scheme.

My granddad died of heart/lung issues. My grandma had Alzheimer's and lived a half-life for years. My mother died slowly in a care home with no dignity at all, despite her having family visits twice daily (very unusual in that place). Eventually, she stopped eating to put an end to it.

the thing is, I think people underestimate the amount of mental capacity looking after an elderly P takes up. I am relatively lucky, I work from home 2 mins away from DM's house; kids are 20 and nearly 18, DH works full time etc etc, and as I said earlier she is still pretty independent for almost 87. BUT it is always in my mind when the phone rings, from has she had a fall, to what latest idiotic thing is she worried about (eg letters from charities, cold calls etc). I dont and wont do the physical stuff, and nor would she let me. But the fact that if I have to take her to a hospital appt and it takes her 15 mins to get out of the house and into the car and vice versa is enough to send my blood pressure soaring. obvs I'm not very nice, but when you are factoring that extra half an hour into everything else, it becomes yet another stress factor.

No nice way of saying this but I won't be giving up work to care for any of them and I wouldn't expect my DCs to do it for me. I wouldn't mind MIL moving in if she just needed a place to be when she's old and frail but the rest can sell their houses and get a room somewhere.

My mother has specifically said, "if I get to the point where I need personal care, I do not want any of my children to do it. Put me in a home". I've worked in nursing homes, hospitals and community care. There are service users with no family, majority have family visit once or twice a week, and quite a few have very involved family but as they are supporting their own family's don't have enough time to do things like shopping, housework or be there daily. I think each family is individual, I also believe if you are good to your children they will be good to you in return