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?

It might be out of your hands, of course.

My FIL has dementia and is now in a care home, which wasn’t his choice, but it was for the best.

What I truly do know is that unless you have been there you absolutely don't know what you would do.
There's a vast difference between popping in with shopping and a bit of life admin and an absolutely beautiful Mum who has worse case Alzheimer's, never letting my dad have a minutes peace and leaving the house undressed. Because I truly had no idea until it devastated our family. And we all pulled our weight.
Nobody can answer your question..

Our mam theres 3 us. We each call a day. Would I do full T care no. It nearly had us collapsed minding our dad. Find some elderly presume it though. She 80s. My sister had to reign it in said you could be on road 7 days with it all) and demands

I agree that the concept of 'capacity' needs to be reviewed. I also think that HCP/Social care should be required to consider the mental and physical health of family members caring for an elderly person- at least to try to ensure that they understand how needs are likely to increase/the toll this can take on carers etc and to give them someone to speak to when it becomes overwhelming. Of course, that would take a lot of resources so unlikely to happen any time soon.

My observation is that HCP/Social services are very unlikely to question anything if an elderly person with care needs says 'I want to stay at home'. Even when they have dementia and frequent crises as long as there is a family member responding to calls for help only in the most extreme cases is their desire to stay at home challenged. Those of us dealing with elderly parents know that often 'I want to stay at home' actually means 'I want things to go back to when I was well and I am afraid of change'.

I fully expect my mother to announce that she needs live in care (I.e move in with us). She’s already dropped hints.

it wouldn’t occur to her that I have my own life to lead and may not want to or feel comfortable being a full time (unpaid) carer, give up my job and freedoms etc.

obviously I won’t be doing it. I will provide financial support if required and visit regularly but I refuse to take on that permanent role.

she never did it for her mother

Yes, it amazes me that HCPs and social services aren’t required to view the needs of the family rather than just the elderly parent. I’ve had them ask why I can’t move in to care for a few days/weeks after a hospital
stay - because I have a full time job, mortgage I’m responsible for paying and children at primary school.

I’d be in big trouble with social services where I live if I didn’t pick my children up from school because I was in another city caring for elderly person.

And funnily enough, my children come first.

I think its all very well suggesting people give up their jobs and family life to care for elderly relatives but that is completely unrealistic and pie in the sky for most people.

Eg if I gave up my job, I wouldnt be able to pay my mortgage so we would lose our house. If I spent part of every day away from home, I wouldnt be able to support my young teenagers properly and they still need support even though they arent toddlers any more. It would also affect me emotionally and physically.

Therefore, it's not about me deciding to not make the sacrifice, it's literally a physical impossibility and I suspect this is the case for most people with jobs and their own families to care for.

Even IF I was a millionaire and didnt need to work I still wouldnt be a full time carer as I have neither the skills or the patience to do that kind of work. There is no shame in admitting that.

I have siblings and we all pitched in as my mother became increasingly frail. Although obviously I don't want my children to look after me but none of us know how it will pan out. I will not go into a home unless it's a last resort.

Not everyone has siblings so this is rather short sighted - I am an only child which would mean I'd never ever get a break or any respite at all. Its easier if you have siblings but not everyone does

Orange alot of families there are fallouts so not a given siblings will help. My mother has a romantic view of it I think. With cost living nobody can just give up their incomes.. Ive college fees aswell. No easy answers. There were rows over overnights as everyone had their own kids..

I agree. My sibling is adamant that mum must be cared for in her own home by family (which is realistically just the 2 of us and a few other elderly relatives). I don't think this is realistic but he is only willing to consider what is theoretically/technically possible - eg. I could either work from her place for half the week to care for her, or go to work as usual then spend the evenings and weekends looking after her. He is not willing to considered whether any of this is actually practically feasible eg. how much work would be possible whilst also acting as carer? when do I get time with my own family? how do I care for anyone when I am exhausted from effectively working round the clock?

I also think it's not just a case of how much am I willing to sacrifice, it's also how much am I willing to make my DH and DC sacrifice.

DH did a lot, a lot, a lot for MIL and that impacted our family life a lot. The more he did the greater the expectations. When he started saying no he got a lot of nasty pushback. I learned an awful lot from the experience. Say no early and often and don’t let the expectations start. I won’t be caring for elderly relatives. Luckily I won’t be asked due to dynamics but I won’t be doing it.

Willing implies I have a choice - which I guess I do its just the choices are not always good!

Personally, we are increasingly supporting and providing care for our elderly relatives which we are happy and able to do but we are still working FT and supporting school age dc at home. My retirement age has risen (which i accept) and increasingly I am being told that retirement is something I must plan to fund for myself throughout my working life. There is an increasing media and political narrative too that the state shouldn't be supportjng working age people who potentially can support themselves, and coupled with all the recent talk about youth unemployment and that young adults should be moving away to seek work it just all seems completely contraindicatory. We can't have it all ways.

Im fortunate to be geographically close but thats really by chance rather than plannjng. I can't though work to support my family and my future self and also provide the 24 hr care I know one of them is inevitably going to need (degenerative neurological condition).

When I think about my family's previous generations rightly or wrongly it was the women who provided care for aging parents but they either were in working in voluntary roles or/and retired at 60 and stayed local as their husbands found work nearby. Both relied on state pensions (which lets face it may or may not be there in the future). Add in current limited social care and funding and it's just a ticking time bomb with the whole wider picture being just a mess.

Just my rambling thoughts after another difficult day juggling everything and feeling like an absolute failure.

Edited for terrible spelling. It's been a long ass day.

I read a lot of ridiculous ideas and expectations on this board, but this is a cracker. Your brother is deluded. Tell him you'd be burnt out in weeks and not able to do anything for anyone. If he mentions it again after that I'd just laugh.

The other thing, which isn't really mentioned, is the problem of people having children later... So people used to be 60 (and retired) when their parents in their 80s needed help. Their own children were in their 40s and independent.

If you don't have children until you are 40, and neither did your parents, then when your parents are 80, you are 40 and your children have only just been born. You have people with even less time to be carers.

I speak as a rare child of my era with 40 yr old parents. So now I'm in my 40s having to care for parents and children (albeit I had my children younger so they are teens now).

This is going to be a massive issue in a few decades and something that is overlooked when people discuss waiting longer to have their children.

Agree with this. The caring creeps up on you. First it’s a couple of hours a week to do a big shop. Then while you’re out you stop off to pay the paper. Then it’s a hospital appointment occasionally. Then it’s all hospital appointments, along with vaccines, batteries for hearing aids, eye tests. Then it’s long hospital admissions with twice daily visits because otherwise they don’t eat. Plus keeping their home ticking over..

Most people who have children later don't do so by choice, it's because they haven't met a partner or haven't been able to secure housing or have had fertility problems. So consideration of the age of their parents is just not going to factor in. And at least of you are dealing with elderly parents aged 40 you should be relatively fit and healthy yourself rather than it not happening till you are heading towards retirement. I have friends who were coping with young children and elderly parents in their 40s and it was extremely hard but they are now in their 50s/60s and without commitments. But there are others who are 60+ with childrearing just finished and now the possibility of 10+ years of parent care just when their own health possibly starts to deteriorate and the prospect of working FT till they are 67. Not sure which is worse.

What do those of us do who have really poor relationships with their parents? I am the only one doing anything for her really as one sibling lives at the other end of the country and another is 20 miles away but working full time and only visits once or twice a year. I have a really poor relationship with my mother. She is rude insulting and very difficult to be around. However she has a coterie of young women from her church who dote on her. She isn’t rude to them so I am just leaving her to them in the main. It feels dreadful and I am full of guilt , but my own issues absorb a lot of my energy and I just can’t cope with her.

I feel I sleep walked into caring for my late mum and eventually she moved to a home (lived there for about 17 months). It was the worst time of my life. I was middle aged, struggling with menopause, had 2 teens. I lived across the road from her and wasn’t working which bought its own challenges. Mum apparently had capacity to the end but I’m not sure she really did understand or remember the nature of her needs. She regularly told everyone things that she wasn’t doing, that she hadn’t been able to do for years. When I told her social worker I couldn’t cope any more, the advice was to stop but it really wasn’t that simple, I was ground down by years of being guilted by both parents. She would just keep phoning every couple of minutes until I responded. Even on her death bed she managed to be horrid to me though she wasn’t herself any more. I was her only child, no other living family though judging by the arguments around care this may not be a bad thing. Once she moved to the home, though she wasn’t always happy and I was still called upon, I was able to put some distance between us which I really had to before I collapsed completely. Caring for her gave me more anxiety and stress than either of my children did and, a year after her death, I don’t think I’ve really fully recovered.

I completely agree with pp about how capacity is determined. I’m not at all sure my mum had a real grasp of how things were when asked what she could do. I had many confused phone calls from medics when she told them she lived alone doing all kinds of things after being brought in by ambulance from the care home. She was convinced and was convincing. She had no real idea of the impact it had on me and her grandchildren, nor was she accurate in her assessment of what she could still do. I got the feeling no one wanted to say she didn’t have capacity owing to what would follow from that.

@thedevilinablackdress I have made it very clear that this won't be happening. The suggestion came because I said we should look at paid care options (including residential care for later down the line) because I work and don't live nearby. I have learned not to give any reasons for not doing more as sibling and others involved take it as an invitation to find ways around whatever I mention.
@Brunchatstephanies I've also found the expectations, and push back when I say no, have increased the more I do. I was never someone who spent a lot of time with my parents as an adult (sibling did) but when there was a real crisis I dropped everything to stay for weeks to help, then agreed to help with lots of smaller practical things (shopping, follow up medical appointments, cleaning etc) 'just to get them back on their feet'. Rather than appreciating that I'd obviously done a lot and must have left other commitments at short notice, the reaction seems to have been that I clearly CAN do more if I really want to so it's unreasonable and uncaring to say no to anything. I don't blame mum for this as she is in the early stages of dementia and I really don't think she can understand the implications of what is being asked of me (she just sees it as 'enoughbananas just came and stayed with me before so we can just do that all the time and everything will be fine'). What has surprised me is the uncles/aunts/cousins/family friends etc who have stepped in to 'encourage' me to find ways to do more. It's been quite an eye opener- people who were in almost daily contact with me and claimed to care have not spoken to me since I started saying no. I am still doing a lot for mum so it's not like I have walked away- just put up some healthy boundaries.

@enoughbananas same here. My DM had a medical episode 5 years ago and came out of hospital on palliative care, doubly incontinent and unable to walk so is in a wheelchair, hoisted from her hospital bed etc. 4 x carers a day and my DF running the house i.e. cooking/cleaning/washing etc. He's 83 and she's 79. When it all kicked off, I did everything for them both with regard to life admin and getting DM home (as that is where she wanted to die), liaised with SS, district nurses, GPs, hospital clinics, arranged care package, arranged wheelchair/hoists blah blah...have sorted a wheelchair assisted car, car insurance, house insurance, car tax, sorted PoA, benefits, blue badge, Tena pad orders, prescriptions, food orders, hearing aids, eye tests...plus visiting 3 x week. You name it, I did it.

All this plus working, plus 2 DC (now young adults) but still supporting them, a horrible menopause, mental health took a nose dive, DH dealing with his own DP's and their issues and it all became too much. Had a bit of therapy and put up some boundaries and dropped to 2 x visits a week but still do all life admin...well, you'd think I'd cut DM's arms off.

I've started to dread my 2 x weekly visits but I made a rod for my own back by doing SO much for them in the early days because it was terrifying to hear the news that she would die within weeks of coming home. The more I do, the more they kind of expect me to do...it's exhausting. But I am putting things in place to restore some order now.

We also had a deluded sibling abroad who was controlling and demanding and an absolute nightmare while dealing with MIL. MIL had high needs but was a delight. It was truly awful.

Reading this thread has given me so much solidarity.

I’m just starting to understand that this whole situation is a horrible first part of the grief process. The moment when you switch places and lose your parent. God, I feel so sad about that.

I don't know why "a home" is seen as a last resort or final insult. The one my mother went to was lovely. I'd have liked her to have moved there sooner, she was cared for 24/7 with all her medication and hygiene properly managed.

It would've cost all the money but we weren't well off in any case. The funds she left us would have paid for about two years there.

The council-funded places we looked at were nice, too. Slightly less well run, something of an air of managed chaos, but with an equally nice atmosphere, helpful staff and happy-looking residents.

The bad old days of warehoused elders sitting on hard chairs all day were more than half a century ago. A "home" is much better than shuffling slowly around the ground floor of your house, forgetting your meds, failing to eat well and to keep yourself clean.

I agree, but if siblings disagree it’s difficult .