How much responsibility do you feel to look after parents in old age?

Exactly this - great post

@Blossomtoes that is good to hear. I think we've possibly found one (a nice one) that will take them both when they have spaces. They will sleep in separate areas but can be together during the day. tbh I think the one without dementia needs the space, it is destroying their mental health and mood to see their much loved partner ranting and raving and shitting themselves.

I found a home that took both mine - one with dementia, the other without @venusandmars. There were some care homes that would have split them up and I rejected those. My parents had adjoining rooms and spent all day together, just as they had at home.

Yes my parents are similar - their house is all on one level, when they had the bathroom revamped just after Christmas they had a bigger walk-in shower put in, with grab rails and a flip down seat. It's all the rest of it though, agree that there's no point having a freezer full of food or all the tablets sorted into the days of the week if the person can't recognise that they are hungry and need to eat, or doesn't know what day of the week it is.

OP if your father doesn't want to go into a home then he needs to put things in place to help avoid it. Such as living in a flat or low maintenance bungalow. Having a housekeeper or cleaner. Making sure the garden is low maintenance. Having a big freezer for ready meals. Making sure he lives near good public transport (at least for the moment, it's not easy to predict bus routes etc but living near a railway station helps). Having a walk in shower rather than a bath. Living as healthy a lifestyle as possible to avoid avoidable problems.

My PILs had sensibly moved to a single level house, replaced the bath with an accesible shower, had help at home, private physio support, meals-on-wheels etc. Eventually though that is not enough. A care home is now the only place where they can be safe. It will be devastating for the one with dementia - the differing care needs means that even if we can find a home that can take them both, they won't be together.

@TheDogthatDug

No my background is West Indies / Caribbean. I was born and raised in the UK but have family both here and in two other countries (mother and father’s country of origin). It is not so much multigenerational households but more of lots of family living very close by with stronger community ties. So grandma might live for a short time with mum but neighbours, friends, aunts, uncles, nieces, nephews, sisters and brothers will pop in and support. The main difference I see is that there is less time when the elderly need really intense support. They don’t seem to be as Ill for as long before passing so there is less intense care needs. This is purely my observation but I think warm weather, lots of visitors, lots of fresh fruit and good cooking helps.

That’s all fine and dandy but doesn’t mitigate the need for residential care. All the things you mention are avoiding the need for help, not care.

There’s not much point in having a freezer full of ready meals if you can’t microwave them or having a walk in shower if you need to be reminded to shower and helped to do so. At the end of the day, if you get dementia it doesn’t matter what future proofing you do, you’ll need 24/7 care.

Sadly so many of thee decisions are taken out of our hands. My PILs were adamant that they didn't want to be a burden to family, however now both in their 90's with a whole range of physical limitations, sight/heaaring loss, dementia and increasing frailty they require increasing amounts of assistance. my dh was visiting last year when one of his parents had a fall. Until a care package could be arranged (took many weeks) dh became the defacto full time 24hour carer. Doing all aspects of personal care including helping his Mum dress/ undress and go to the toilet. Not what anyone would have planned or wanted but he couldn't walk out and leave them.

Things have deteriorated rapidly, they now have 24hr live in care, but the parent with dementia is increasingly delusional and paranoid and thinks they are being held hostage on a farm. Tries to escape. That is so distressing for their spouse of 60+ years and the family are actively looking at care home options for both. Their house will be sold but with 2 people in residential care the money won't last long.

They don't want to live like this. We don't want to see them living like this. But what can you do?

It's the difference between Helping and Caring. People talk about caring for parents when they mean taking them to the supermarket, ordering stuff online, accompanying to medical appointments. But that's helping out and something most of us would be happy with. Caring is much more involved and can take over your life.

It's fine to know your limits and say that actually, you can't cope with full 24/7 care, or even sharing that sort of level of care with a sibling, it would totally take over your life. This is what's happened to mum over recent years as dad has gradually declined. Although she wasn't needing to deal with incontinence she could not leave him unsupervised for even 5 minutes. It's so draining for her. And now that he's in hospital she has started to realise just how much looking after dad has dominated her life and feels incredibly guilty about feeling that way.

It's an emotional minefield, with responsibility and guilt all tied up together.

In my experience, the ones who say "you cannot put me in a home, I expect you to care" are the ones who have been terrible to uninterested care givers themselves.

MIL always said she wanted to be carried out of the house in a box - ie, she didn’t want to go in a home! She was a SAHP until all her DC had left home; she devoted her life to her family, and always worked hard at it.

OP if your father doesn't want to go into a home then he needs to put things in place to help avoid it. Such as living in a flat or low maintenance bungalow. Having a housekeeper or cleaner. Making sure the garden is low maintenance. Having a big freezer for ready meals. Making sure he lives near good public transport (at least for the moment, it's not easy to predict bus routes etc but living near a railway station helps). Having a walk in shower rather than a bath. Living as healthy a lifestyle as possible to avoid avoidable problems.

It's no good eg staying in a five bedroom house out in the country and then saying you can't cope and your children daughters have to sacrifice aspects of their lives to deal with things you should have been able to foresee.

Not read the full thread but I think there's a massive spectrum of needs.

If I lived close to my mum, would I take her to appointments etc? Yes.

Would I mow her lawn - probably not but I'd pay someone to do it. She does pay someone to do it.

Would I cook for her - probably not that often but I would take her M&S ready meals (she also buys those to have when she doesn't want to cook)

Would I do washing and light housework - yes if I lived close enough and wasn't working full time but much younger people have a cleaner and my tight-fisted father even paid for one! Sorting out clothes washing isn't a difficult job.

Would I do personal care and nursing - no. People who do that are trained professionals and have the right equipment. When my father was in his last six months of life, he needed two people to take him to the toilet, even with a hoist. That isn't something you can do on your own especially if you have kids and/or need to work to keep a roof over your head.

There is a massive difference between helping out at one end of the spectrum and care and nursing at the other.

As for elderly people moving, it's a difficult one. I don't think they do well when "transplanted". My aunt died within six months of moving to be close to my cousin, my aunt-by-marriage died within four months of moving to be close to her daughter :(

@jhiyp96676y " BIL lives with PIL and looks after them. PIL are both elderly and have physical as well as mental problems. After six months of taking care of them - BIL is now permanently angry, sleep deprived and pissed off with them"
I see how this happens to someone. I've spent a lot of my employment working with people with profound disabilities. I've been a very patient person not phased by personal care of the messiest kind. Now I feel like I've been broken. I'm no longer so patient with DM, especially when she refuses to do things like put her hearing aid in so she can hear, or use her walking frame etc. Last time I had to clean up after she was incontinent & had wash diarrhea that had run all down her legs I vomited afterwards. She has capacity & won't go into a care home.

Really sorry if I offended anyone, when I said I would care for them I meant I would participate in decisions about their care, help as much as I could etc, I certainly didn’t mean provide 24/7 physical care as with my life as it currently is wouldn’t allow for it. I just meant I wouldn’t leave them to fend for themselves.

@OlympicProcrastinator

I'm glad you have posted as I was hoping someone from a different cultural background would post just to give a different perpective. Are you Asian? It seems to be the common for Asian families to have multigenerational households which I can see is wonderful but also could be challenging depending on the personalities/circumstances involved.

My Mother died before needing care which I am glad about because my mum would have hated it . She did need help with technology and we looked after her when she was unwell in her old age ie chest infection,hip replacement .Father died many years ago .
Am certain that my sister and I would have continued to do as much as possible to look after her but she was always adamant that she never wanted us to give personal care because of her dignity.
The only conversations I have had with my own children is that we will sort out POA in our 60s and that if we require care ,they will ensure that we are well looked after.

@SerafinasGoose Absolutely right. Your life matters as well. At some stage we have to say . NO. This is my turn to live my life.

To those who say "my parents cared for me, its my duty to care for them, I say "Nice sentiment, but do you realise caring for an elderly P is bloody hard work, quite different from caring for a child."

I think we would need a definition of 'caring for' to be able to respond appropriately. For me, 'caring for' means making decisions that ensure they have the support in place that they need - whether that be you, as the child, providing it or bringing in carers and ultimately, making a decision to put your parent in a home.

Like you, I suspect many of the 'I would do the caring' posters have never actually cared for an elderly relative, particularly one with dementia. I made a decision to put my mum in a care home when she could no longer live safely in the community - I gave her as long as I could but she was no longer safe and was becoming a nuisance for her neigbhours who had been happy to support her to a point. She couldn't live with me because as I was a single working parent and her behaviour was frightening to witness and ocassionally she was threatening violence. Essentially, she'd have ended up taking the roof from over our heads because I couldn't have afforded my mortgage if I didn't work so a care home was our only option. It was a terrible decision to have to make but I have no regrets. It was right for us as a family and right for her that she had specialised care from those who knew what they were dealing with.

Love, real love, is having them cared for safely 24/7

This is exactly it.

My mother died young. I was too young myself at this point to comprehend was caring for a terminally ill relative meant - the whole thing blindsided us and she died a mere 5 weeks after diagnosis leaving everyone shocked and reeling. I have a brother, but as the female next of kin I found the main caring responsibility fell to me, and I was the one the doctors contacted in the first instance. If they called me I had to drop everything. My mum had a brain tumour and wasn't in control of what she was doing. She could fall at any time with no awareness, and I was lighter than she was so found it impossible to get her up. Long-term care in that situation would have been very difficult - and at that age was outside my comprehension or experience. I wasn't even thirty.

My grandmother died of MND 6 months after my mum. She begged me to help her die. I just didn't know what to do. I didn't have the courage to do that. I had never heard of Dignitas, and was still struggling without my mum to help me. Then my grandfather developed dementia and also had low blood pressure which made him liable to sudden falls. He also very uncharacteristically turned on me - thought I was trying to hurt him (not his fault, but the condition). You cannot care for someone at home under those circumstances. It would have been dangerous for him and for me.

I have no chance of caring for my parents in their old age, they're already gone, but would say that people rarely know what this entails and often decisions are taken out of your hands. There are usually guilty feelings - the feeling that you've failed them. But I could only do my best with what was available to me in terms of experience and resources at the time. (I can't help thinking, though, that it wasn't a very good 'best').

Now my only surviving relative, my brother, is in what I suspect are the final stages of chronic alcoholism. Again I'm the one expected to pick up the pieces whilst he's barely functioning but knee deep in denial, insisting nothing's wrong. I'm exhausted, and to be honest also resentful - I'm recovering from a serious injury and now my DH has been diagnosed with early stage cancer. (He's 51). I can't pick up anyone else's broken pieces right now. DH is the one who needs and deserves to be my priority.

I just can't do it all - be there for everyone, as I have been constantly for years. And because I'm FUCKING female the whole of the rest of society thinks these unenviable 'rescuer' roles belong exclusively to me. (In DH's case they do, in other cases, they fell to me because I was the competent one). I have a young child to think of on top of all these other issues.

I'm exhausted. I feel like someone who's lived a much longer life than I actually have. To others in this position I would say it's all very well to pontificate about what you WOULD do, but being in that situation is a different proposition entirely.

Sorry - this thread has opened the floodgates for me somewhat. Thanks if you've read this far - this post has been cathartic.

Isn’t it? Love, real love, is having them cared for safely 24/7. The point comes where that’s impossible at home. I guess you have to have been there to get it.

To those who say "my parents cared for me, its my duty to care for them, I say "Nice sentiment, but do you realise caring for an elderly P is bloody hard work, quite different from caring for a child." My DM has "topsy turvied" her life. She sleeps most of the day and is awake all night keeping the household awake, half of whom need to be at work next day. She is a falls risk so everyone in the house is on high alert, even if they are sleeping, the slightest noise wakes them up. She has had 70 odd years of being in charge of her own life so isn't going to give that up easily - it's not like a child who is more or less compliant. She's also heavy - have you ever tried lifting even a size 12 adult woman from the floor or out of the bath? Not like picking up a toddler. The provision of any kind of daycare for elderly people is near non-existent. No 30 hours free care for them to give carers a break.

When you have children they get more independent so a parent's caring job becomes less hands on, turning into guiding rather than full on caring. At age 5 children are in full time schooling so out of the house a big chunk of the day. With an elderly its the opposite - and can go on, getting slowly worse, for 20 years as they decline physically & mentally. As I child I was potty trained by 3, using the toilet by 4. An elderly person can be incontinent, producing adult amounts of urine & poo for years and years. In the case of DM, she is fully aware of her incontinence so there is also emotional fallout.

I looked at my sister, DM's main carer, yesterday - she looks exhausted. I try to help, unlike my DB who's gone awol. Another family member, who is ill himself with long covid, also does lots. But even spreading the load is leaving us exhausted. We're not young 20/30 somethings with energy and strength. DSis & I are both in our 60s and have our own health problems. Goodness knows how sole carers manage. It's a scandle that so many people are left caring alone without adequate support.

Caring for an elderly P is demanding physically, emotionally & mentally. Don't underestimate how difficult it is.

Nice subtle dig at those of us saying that we are not prepared to provide 24/7 care to very frail parents or parents with dementia. We just don’t love them enough.

I wouldn’t say I feel responsibility to care for them, but I will do it because I love them and they have been wonderful parents.

No, fair enough.
Definitely depends on their health/the situation.
It’s very different if someone needed round the clock care.

I hope they change the law in the UK. Assisted suicide might be something considered by one of our loved ones due to a recent terrible diagnosis. He’s talked about going abroad but the legalities around those that might accompany him scare me.