How much are people willing to sacrifice with care for the elderly?

[mids2019]

We are probably in a situation familiar with a lot of people here with frail parent (fil) as well as teenage children and jobs.

the question is how far do you go to support the elderly parent given traditionalism have to make large sacrifices at home? Do people get to a stage of costing a very crisp immobile parent so often that family life becomes increasingly strained but from an emotional level feel little choice? Do people give up employment to look after the elderly and is there a societal expectation that children especially women should become essentially full time carers?

How do you go about making decisions about how to organise your lives with change?

I kept going till I had a burnout/breakdown last summer. Dmum is now in full time care and it breaks my heart every time I see her. She has dementia and is frail. She always said she never wanted me to look after her but I just kept on picking up more and more.

I cared for mil for 10 years, the last few 24 hours per day. She had dementia. I thought it was the right thing to do. I don’t want my DC to do that.

Oh yes, the bottomless well of annual leave and weekends! My mum pretty much doesn't accept that l can't take annual leave whenever and for however long l want. Interesting when she's keen for me to clear a relatives hoarding house when they day. Which will take numerous weekends and 12-18 months of annual leave. Meaning my children wouldnt get a holiday or much time with me as l have been guilted into clearing a load of tut out of a house 🙄

Didn't do it, would not want my dc to
make sacrifices to look after me.

Be very careful about what sacrifices you make OP. From experience this could he for years, even decades.

My DFIL very much expected me and DSIL to do the care but it just wasn’t practical.

Instead we set up systems so that he was looked after but without daily input from the two of us, although DH did end up doing a lot towards the end.

So things like shipping delivered, he could manage to order this himself mostly.

Falls alarm. Prescriptions delivered in a dosset box. A cleaner and a gardener and he chose to have a carer once a day in the morning.

He also went to a few social activities like a lunch club for the elderly.

Dont forget that any care you provide will be for 52 weeks a year unless you can get someone to cover that care for you or he will agree to go into respite care when you need a break.

I also found my Mum's via a local care agency. The big ones all offer live in care. However I think they source people at that point.
I recommend trying it. I don't have the "care home guilt" although there are a lot of other challenges.

I'm sure we all feel that, but we also accept that an old person needs feeding / cleaning, which requires human labour and thus costs money.
So if we don't want people to sacrifice themselves to care for parents, we'll have to come up with/ pay for, a social care system. Which politician's are afraid to discuss with the electorate, because we all want someone else to pay for and care for the Boomers.

Not sure why we’re talking about boomers. In our family it’s not the boomers who need care.

No one tells you that in this century the disease your parents die of is a tectonic plate in your life, the same way your marriage, career and children are.

Given many still escape The Lost Decades of Caring, it’s a huge, new form of social & economic injustice.

I was happy enough to provide support to my parents, but as I was working full time and single I couldn't provide much in the way of care. My DM moved into care when it became obvious she wasn't coping well at home, my DF moved into an apartment in a care home complex so help was on hand if needed. Neither parent would have ever expected me to look after them. None of my friends have cared for their parents either, I think it is more common here for people to go into care.

I am lucky that I have wonderful parents who did not want years of my life taken up caring for them. They had both worked in healthcare and seen the awful slow decline of many people with dementia etc and didn’t want us to feel guilty if we didn’t provide care. They were very clear that we were to step aside and use carers.

They also did all the sensible things, downsized to a bungalow, decluttered massively and moved into a central location where it was easy to access the gp/shops/taxis etc. That move helped them keep their independence so much longer than they would have in a previous more rural large property and they really enjoyed themselves free time they had- less property to maintain! They moved at the perfect time, still mobile and energetic enough to explore the new area and make friends.

@NoCareNoFair On the recommendation of our local authority I used the UKCIL website which is very good. It allowed me to contract with experienced carers directly and to check references. Continuity of care can be important.

Beautifully put and unless you personally experience, it’s almost impossible to understand how a DP or in my case two with dementia can utterly destroy your career, personal life and mental health.

Its easy to say I wouldn’t do this or that or I wouldn’t expect my DCs to do this for me, indeed my DM said it herself for most of her life, except for the past year when it actually became meaningful. Not her fault - her personality has changed to such a degree due to dementia that she doesn’t really know what she’s asking.

I was always clear about saying what I would and wouldn’t do, but when it comes down to it as an only DC I couldn’t let them live in squalor and unsafe conditions although I have POA on the finances, I could only get in the level of paid care they were prepared to tolerate as apparently my time and effort was free of cost. I was also victim of boiling the frog, where I put in superhuman effort for a crisis, only for the crisis to drag on and become my norm.

I am not sure what the answer is, but I do think this dogged insistence on determining capacity- well yes of course they want to live at home but have you observed the mouldy food in the fridge etc. etc. - without understanding the impact on those supporting “independence “ needs to change somehow. We wouldn’t let a child live in the squalid conditions some old folk are in, so why let them do it under the banner of them having capacity and being their own choice.

I am disabled and in my sixties. There is no way I want my adult DC giving up their jobs or sacrificing their own family life to care for me.

Once I can’t do it myself I will aim for sheltered housing.

I know my mother suffered for it but at the same time she would never ever have expected us to give up any kind of paid work for her. She was the breadwinner for us for many years and somehow gave us effectively an elite upbringing on an incredibly frayed shoestring of income and a husband who kept pulling the financial rug out, by working all the hours. Also she expected us to prioritise our children the way she prioritised us. She made it quite clear she expected to go into a home when needed.

The outcome I don’t think was at all nice for her, but tbh her living with us wasn’t feasible due to her challenging behaviour post stroke, she had to go to a highly specialist setting.

I would definitely rather die than have my son and his future family suffer in any way for my care, and that’s not a casual phrase. The difficulty of course is being allowed to die, but I have done the legal paperwork up to the limit of the law to try and arrange that.

I am not sure what the answer is, but I do think this dogged insistence on determining capacity — without understanding the impact on those supporting “ independence” needs to change somehow.

I completely agree, and actually feel that the ‘capacity’ argument is a shield behind which many of our healthcare and social care providers hide.

It’s a saying trotted out when the dementia patient goes for a wander in the night and gets lost; it’s recently been repeated to DH when a befuddled , but not diagnosed, relative got themselves into a huge financial mess, with the help of a solicitor no less.

Right now, in my 60s, I feel that I have in place the paperwork and indeed the means to pay for my care should I need it. But having witnessed the personality changes which @rookiemere describes, my personal preference would be to go before that happens.

I know this sounds harsh but I do think we keep people alive for the sake of it.

I know many people who have said it would be far kinder for their parents to be left to die in peace.
We do not keep our beloved pets alive living in agony.
Surely it’s better for people to die in relative comfort in their own home, rather than be kept alive and in and out of hospital, causing distress to all concerned.
To answer the question about children caring for parents it is utterly exhausting.
Nobody seems to care that you are working and cannot just attend appointments or provide constant care for elderly relatives.
Having said that there will be lots of lazy adult children who don’t give a damn.
We see plenty of it on here where one person is excited to do everything whilst their sibling just carries on as usual.

Yes being allowed to die rather than living in agony and dustless and causing untold damage to your children and their mental health.

My mother did not want to go into any sort of caring facility so had carers at home. She certainly did not want or expect any of us to be her carers (I actually lived in another country) and fortunately could afford what became around the clock care in the end. My sister did move in to the building she lived in to be on hand (she’s a doctor and has no partner or children), but mostly it was the carers.
I think a lot depends on how much money there is, many families do what they can, but once the care becomes physical then they get professional help.

The oldest of the baby boom generation are just turning 80, so most of the threads on this board are, and for years have been, about an older generation. With the boomers being the ones in large part doing the caring.

The DPs I am supporting are from the Silent Generation.
They in their turn supported their parents.
It isn't a specific generational thing, it rolls on and on.

given traditionalism
traditionally? I didn't understand what OP meant here.

I was always the kid who firmly said she wouldn't look after out parents when they got old and needed daily care. My older brother without hesitation said he would look after them, and I believe he would have done (he helped care for our frail grandparents for years), but then my mom died suddenly & my step-mum doesn't get along with me, much less my brother, so that offer is off the table. Is how my choices pan out. I will try to help if step-sis asks me too, though. She is one who will be asked by step-mum to help. My increasingly frail dad lives very far away, though, so am not much help.

Agreed.

I have no interest in living once I lose my independence and mental/physical abilities to the point where I need other people to care for me.

It is a shame as a society that we can't have a mature discussion about people who don't want to be kept alive at all cost once they not longer have any quality of life and don't want to live through indignity.

I hope for him he is still fit and active in 8/9 years time, he'll be almost 70 by then so I assume health issues will start arising by that time. He had a heart attack last year too, you never know what's round the corner,

Everyone's life is different isn't it, I'm 34, by the time he's in his 80's I'll only be in my 50's. I'm fortunate that me and my dad will be able to live together if need be and getting carers wouldn't be an issue either ( my dad would not want me helping him with hygiene ect )

I was only in my 50s when my parents reached their 80s too, neither had any health issues necessitating care till their mid 80s, so fairly recent for us. I agree you never know what's around the corner, even if I had been prepared and had a suitable house for DF to live in with us he is doubly incontinent now so care visits aren't enough for his hygiene and therefore he is in residential care which isn't what we thought we would want. But it does take a lot of the load off us..