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’m 1/6 children and we’ve talked about this a lot. If one of my parents becomes frail and ill my brother and sister would do a bigger share of the care as they have no kids, but those of us with children would also help. If it was my dad I would probably help more as he lives down the road.

I do worry about if it happened to my in laws though as DH only has one sister and she’s a lot older and already in bad health. I think we might end up looking after them at some point which could be tricky with three children, but they’ve done a lot for us including care for our children a lot so I think it’s only fair we help them when they get older.

This is something that worries me on a near weekly basis despite having currently healthy parents. My mum gave up work to look after her mum, I’ve always felt there’s been an unsaid expectation I would do the same, she makes jokes about rooms in our house that she will move into. I have no intention of becoming a carer to a parent, and I wouldn’t dream of my children doing it for me. I fully accept when I cannot look after myself independently I will need to find appropriate housing. It feels even more pressure as my parents are separated and single.

I loved my grandmother, but growing up with a very unwell older person in our house has honestly scarred me, I dread old age and it has impacted my life and will no doubt continue to do so as I worry about old age.

I don’t think anyone goes into a home unless it’s a last resort!

i think past a certain point, a care home with full time trained carers who have mainly chosen this as a job and rotate around and have days off, with regular visits from family is preferable to a family member with no training no support and no time off.

Well, I gave up having a family of my own, my career, private pension contributions as well as state contributions and a significant decrease in our own budget and lifestyle to care for both my parents and my in laws. Didn’t even get a thank you. But it was the right thing morally to do.
But my conscience is clear, and the alternative options would have not been any better for the parents (and in laws). Do I regret it - yes, would I do it again - no. Would I advise anyone else to do it - I would sit them down and have a long hard conversation with them.
’luckily’ I have no family whatsoever, so future me will have to pay for any care.

@GreenCaterpillarOnALeaf Helping out a bit is relatively easy. It’s dealing with falls, cooking, cleaning, appointments and eventually washing, getting up, all housework etc etc. It’s a very long list when an elderly person can do very little. Many refuse help and careers. You need a line in the sand to know when helping becomes overwhelming and a job.

Exactly this. We live in a country with professional carers, and a Welfare State. It is not (automatically) a family role. Those of us with no kids know that we'll have to sort out our own needs, so why should it be any different for people with families?

I know, it sounds mean but I wouldn’t give up my job and be a full time carer for my in laws but if it came down to it I would for my own parents even though they’re less likely to need that.

We didn’t live near any of our parents, my Father needed proper nursing care after an operation went wrong when he was in his late seventies and he spent 7 years in a Nursing home. My Mother was as fit a flea till she hit very late eighties. She lived near four of my siblings who between them covered her, I assisted from a distance by helping her with finances. Having 6 children was helpful at that point.

FIL retired overseas and he lived with SIL, who was deeply resentful. DH spent 2 months last year caring for his Mother who had cancer, he had just retired and she told us she had cancer 3 weeks later. So our 3 month hurray we are both retired trip was cancelled. If I’m honest I was pissed off. A similar thing has happened to a friend but both her PIL became unwell. I say they didn’t kiss your knee better as a child so unless you adore them then it’s not the same as your actual parents. Also to quote DS to his GF who I overheard recently. My Mum will be a great MIL as Granny (MIL) was so horrible to her she knows how not to behave. I think deep down she is a bit racist. She said to me once I view you as white, I’m mixed race, I was deeply insulted, other stuff as well. She stayed with us when she had her hip replaced as we were both still working FT then, she was a PITA. I am not doing any care for her ever again. She said recently she would like to live with us. I have told DH I will divorce him rather than live with her. She has suggested we all sell up and buy a house with an annexe.

It's the slippery slope/ boiling the frog creep of caring that is the issue. Because when your parents need help with sorting out their insurance or want your help and advice because they can't get the TV to work one day, it's fine. Hardly anyone would refuse to help with the little jobs like that! And then it gradually gets more and more.

There comes a point where full time care is required, and that's an 'easy' choice - family or professionals. But it's the bit before that when they are managing but not quite and it's not quite enough for professionals and it's only this and only that. And more and more is required of family, but it's not quite enough to need full time care.

People don't generally go from living totally independently to needing full time care. It's the gap between that families, usually daughters, have to fill.

My parents moved in with us 5 years ago into an annexe from living 90 minutes away and having them close was invaluable when my DF got cancer and passed away.
It’s also made keeping an eye on DM a lot easier BUT it works because she is determined to maintain independence and not rely solely on us - she has cleaners, lots of visitors, an account with a local taxi firm so she can go out and about. We order her food shop with ours and do odd jobs but she’ll happily “get a man in” if something needs doing.

I took a couple of months LOA to help look after my dad in his final months with terminal cancer, but he had nurses and carers coming in to clean him and dress any sores. My DM did most of the caring. I then took early retirement to look after my terminally ill DH. It was the hardest thing I've ever done and it almost broke me.

My mum lives nearby and is 90 and increasingly frail. As I'm retired and nearby I'll probably do as much as I can when she needs care, but to a limit.

I too don't want to be a burden to my two DDs. After the experience of caring for DH I don't want them to have that responsibility. I really hope I won't be one of those elderly people who refuses care/care home when/if needed. I wonder if we can make a living will, while we have full capacity, stating our wishes for elderly care, giving permission to override any stubbornness that may come with diminishing capacity/dementia?

The Caree’s behaviour determines hugely how awful/ all-consuming eldercare is.

When they won’t accept help except from
you; when they pull emergencies every 5 minutes (avoidable); when they Won’t Be Told; when that triggers emergency of the day 2.

When hospitals want to boot them out cos they’re disruptive. When they won’t look
after each other.

Personality change is common and unpleasant - tunnel vision selfishness, rudeness to carers, racism to carers, absence of affection.

That’s before dementia kicks in.

If she enjoyed being looked after in hospital would it be worth talking to her about some kind of supported living/care home?

I have just spent 6 years caring more and more for my mother. The past year she lived with us as she couldn’t be left for more than 5 hours. I worked part time around her for the past four years. We did have care for the first couple of years, but I never thought they did a great job and they cost a fortune, so she paid me half to top up my pt wage. It was hard, and towards the end I got a little resentful, but I would do it again if I could wind back time.

My husband’s mother had to go into a home as her dementia meant she needed a lot more supervision than my mum had. We tried caring for her initially but it was impossible.

I persuaded our mum go into a care home when it became too much for us (told her it was temporary). She was very angry with me and very miserable but after a few weeks she was happy there. It has given her more independence really as she can ask to have a bath when she wants ... and she shuffles along to have meals with her new friends, makes a decision from a short menu and is no longer having to rely on her annoying daughter for food and drink and horrid showers! And I feel FREE! It's using up all the house money but I don't care. When she's ill they take good care of her, a doctor comes once a week, and they take care of all the medication and appointments. Hurray!

In the past women tended to have children young and not have paid employment. So when elderly relatives needed looking after they had time available. (This doesn't mean I think they should have sacrificed themselves). Elderly people quickly got sick and died so the caring duties didn't last long.
None of this is generally true for society anymore.
So unfortunately, elderly people are remembering how their mothers looked after Granny and Old Auntie Mabel and expect that from their daughters. But their daughters have full time jobs and young DC or teenagers and Granny now lives 20 years longer than Nature would allow because modern medicine keeps propping people up.

In response to your question I will do very little, not a great relationship with my DM. I'd sort out logistics and visit a retirement home. I've had a family member stay (I didn't have to look after them, they just lived here between other accommodation) and that alone affected my mental health. So nobody will be living here ever again.

I will help where I can, but I’m unwilling to become a carer for any elderly relatives. I have a career and I’m pregnant at 36 with my first child, so will probably have teenagers by the time parents or in laws need support.

None of them have really helped us out with anything and have said they won’t help with the baby even though they could (which is fair enough), so I don’t feel like it’s owed. I would perhaps feel differently if we were one of those families that did a lot for each other, like my best friend’s family, but we’re not.

@Canoodler are you me in disguise? I could have written that post bar the fact that my DM had no mobility!

For over 30 years my parents (together then DM alone after DF died) lived in the granny annex in our garden. Meanwhile DH and I had 5 children. DF cared for DM who had very limited mobility because of arthritis and when he died I wanted to support her as much as I could. It was a slippery slope.

I didn't start caring for her 24/7, just did what I could to help her - made her meals, took her shopping, spent time with her. My DH and DC pitched in, particularly my two younger girls and although it was stressful it was doable.

Unfortunately her health deteriorated and my girls lives moved on. Within 3 months two of them got married and one left for university. It got to the stage where I could no longer leave the house because she needed me for something every hour - a trip to the toilet could take 30 minutes. And there were calls in the middle of the night - she could no longer tell the time. It was horrendous.

If I had known what I was signing up for I would have involved SS from the beginning but at the start it was just a bit more help than I was already giving and that bit of help grew and grew. It was a slippery slope that left me angry and exhausted and overwhelmed with guilt.

I told my adult dcs "I dont want you giving up your time and energy.Only care for us if you have decided you want to do so to save your inheritance" 😂

ETA (and we want to give them as much of our money as we can well in advance of our (likely) expiry dates)

The problem with that argument is your definition of 'last resort' before needing a care home will be way past what your children might want to cope with.

I totally agree re boiling a frog. I think this is also where expectations (particularly on daughters) are most difficult to navigate. I think there's also an issue that family members drop everything to deal with a crisis but then that crisis either becomes a longer term issue or a constant series of crises and there's an expectation that the same level of help should continue.
In my case, I took time away from work/family etc to help a lot when DF was very ill. The expectation was that he would recover fully so this would be a short term issue. But that didn't happen and it became a much longer illness, then he passed and mum needed lots of help with the funeral/death admin etc as well as supporting her, then DM had a number of health crises leading to assessments for dementia and needing help to deal with that and now she needs lots of help with everyday tasks and is frightened to be alone. At each stage, it seemed like there was a need for just a little bit more help, and for just a little bit longer so we just managed. Now there is a huge pressure of expectation from DM and other family members for this to continue- we've been managing so far so why does it suddenly need to change?
Unfortunately, as I suspect is often the case, now that decisions really need to be made for longer term care DM technically has capacity to do so but is not really able/willing to think through the consequences for everyone. Her fall back position is that she will not move consider any sort of residential care but at the same time she does not want carers in her home and does not like being alone. I really need to reduce the amount of time and energy I spend doing things for her but since she won't consider anything else stepping back always leads to a crisis and pulls me back in.
I never wanted to take on this role, and have never made a decision to do it. It has just gradually grown. The only possible way to reduce my role would be to just leave her (and useless brother) to it but that feels wrong as I know there will be a crisis so to avoid being drawn back in I will also have to refuse to respond to he crisis.

With respect if he is still fit and active and working full time at 60 (which is true for most people) then it is vanishingly unlikely that he will need care in the next few years, I hope that is true for you. Most 60 year olds I know are caring to some extent for at least one elderly parent themselves. My parents are in their 80s now (I'm the 60 year old) and only in the last year started needing care but they are beyond recognition compared to their 60 year old fully active full time working selves - I could never have anticipated how much they would change.

I agree about the creeping nature of it, we have only started on this journey in the last year, but we will not be having parents live with us (impossible without moving house), will not be doing personal care, will not be retiring early to act as carers. But we are and will take on admin, odd jobs, organising professional care etc.

It’s your sisters choice and she’s allowed to make that choice. In the same way you have chosen to go part time