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?

We would never become full time carers for our parents and I would never allow our children to be for us.

Sorry @mids2019 'costing a crisp immobile parent' - what do you mean?

Sorry that was meant to be looking after......autocorrect on my bloody kindle.

We are in this situation - two full time jobs, teen DC, and MIL who is in a wheelchair and on her own after FIL died a couple of years ago. She is living in retirement accommodation which I would really recommend - much better for her and a huge weight off DH's shoulders. Is that a possibility for your FIL?

When my elderly mum was dying (cancer) I took a leave of absence, as did my sister, so we could help out. But that was with the sad knowledge that this was a finite period in our lives. And I had my job to go back to.

My MIL had a more typical slow decline into dementia, and physical illnesses. My DH & I were her primary support. I saw my role, in particular , to organise help - OT, Care needs assessment, prescription delivery, food delivery- rather than care directly, ifswim.

And I only did that to ease the load on DH.

My DH had to learn to say ‘no’ and ‘enough’ as caring for an elderly relative can consume you.

No way would either of us given up work to become a full time carer, societal pressure be dammed. And the caring for his mum put a huge strain on our relationship, to the point I was close to walking away.

I think there is an expectation that adult children, especially females, will step up.
That was certainly the expectation of my own mum’s GP service. We had to beg for help.

But whilst I hate the phrase ‘be kind’, we do have to try to be kind to ourselves in the whole sad process.

You do what you have to do. 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.

Would never become carers to my parents, done enough caring to last me a last time with my disabled children if my parents don’t want to go to a home they unfortunately need to pay for carers or get my brother (whos like a chocolate teapot) to help.

I worked part time for twenty years to spend the rest of the time as a carer for mine. Wasn’t particularly appreciated and meant i didn’t progress in a career.

There is no one, or even handful of answers to this. Every circumstance and set of people are different. Personalities, relationships, distances, housing, money, jobs, children, health. So many factors. Yes women are often the default carers in life and you only have to spend a bit of time on this board to see the impact of this.

Rather a home than children having to give up jobs and family life to care for us

We'll be looking for a home for my DM whos 72 soon. Shes unsafe alone as she has dementia and lives in chaos as she struggles to get around. It would be nice to say she could live with me, but Id be giving up the next 20 odd years of my life potentially. My great aunt with the same symptoms lived to 96.
My aunt lost 10 years of her life and career aged 50 to take care of her mother. No one thinks they maybe taking on decades of care and stress which will impact your marriage, kids and ability to work.

My DB and I each visit for a couple of nights a fortnight and have done so now for 2.5 years. That is our approximate maximum (except in times of crisis). Our parents wish to stay in their own home and have the finances to to so with our support. Within the last 2 months they have started having a live in carer which takes a load of our mind. None of us think it would be fair to ask us to do more.

That worked for you, but I think the pressure of 'you do what you gave to' is what breaks so many people here. What if you only had one child or others were to far to offer support? Would/will you expect one to stop their life to look after you?

My dad is a very prideful man and probably wouldn't want me to be his carer. But I happily would be and I'd happily live with him and my two DC too.

He's 60 already ( he's very fit and active, still in work fulltime ) Realistically, everyday I have with him now is an absolute blessing. My friend recently died aged 52 and it was such a shock.

I'm a carer for my two disabled children, but they wont need as much care as adults, hopefully by the time my dad needs care my children will be late teens or adults ( 11 and 9 now )

But either way I want to be there for him. My dad has always loved me, never hurt me, always treated me well and spoke confidence into me. He came from a beaten home / grew up in care and he never ever passed his demons onto me and I know he has them.

What I’ve seen with my own parent is there is an increasing selfishness and stubbornness as she gets older.

So despite her saying previously ‘oh I don’t expect you to care for me’, and agreeing in theory to get carers in if she needs them - what actually happens when a crisis occurs is that she calls me and expects me to deal with it.

The problem is she doesn’t think she is bad enough yet to get extra help in (my help is not really seen in terms of actual help, just doing a few things), so she thinks she’s coping well and more independent than she actually is, so when the thing happens - she gets sick or has a fall - I’m the only one to step in as there’s nobody else.

But when she recovers, she claims she doesn’t need help and is doing fine. Until the next time of course…

Like now, she is back home after a few days in hospital because of an infection that wouldn’t clear up despite antibiotics. She’s still a bit frail but doing well - loved the hospital by the way, loved being looked after and fawned over.

I’m now getting lits of requests to ‘just pick up X on your way home from work’, and when I get there she has more things for me to do.

I’m exhausted, and feel trapped. But in her mind, she’s a frail old lady and is just asking for a few little things… for me it feels like another job on top of my actual job.

It’s frustrating as I can see the next few years being mapped out in terms of increasing needs and demands (hers) and increasing frustration and despair (mine).

I have been in that situation only now coming out of it as DPs finally agreed to move into a care home 5 minutes drive away, rather than not coping in their house an hour away. They too would have said they didn’t want to be a burden - DM particularly- but a combination of mental decline, dementia and something that seems to kick in with many of the very elderly- the preservation of their life and independence becomes so important that they are literally unable to see the horrible impact it’s having on their poor relatives.

In the end you have to pick yourself. Let the crisis happen to an extent. Social services and NHS are all about the rights of the individual, they don’t seem to give a damn that working age tax payers are reduced to a febrile wreck unable to work. It’s all economics really, thank goodness my DPs had enough money to self fund their care home or we would still be in that horrible limbo where we could never enjoy a single thing - day out, meal with our son, simply going to work - without expecting the panicked phone call which could either be that one of them had fallen and needed an ambulance, or they had mislaid their glasses, they were unable to distinguish the difference between either matter.

There is no satisfactory answer as people live longer and care home fees are so prohibitively expensive. The irony is I won’t have the choices my DPs had as for various reasons- some nothing to do with DPs, but in a large part due to the physical and mental cost of the last year - I won’t have amassed the fortune needed to make my own choices about when to go into care.

I had to go part time as doing life admin for another household as well as my own was just too much for me. Plus all the appointments...

The care part crept up on me, and this is the danger. First I was just changing batteries and lightbulbs and fixing little problems, which became making meals. She had carers coming in but it seems such a waste of money for them to come to do 'little jobs' that I did them. Until we slipped into her needing intimate care, which was my red line.

She now has a live in carer, which is great, but I still visit most days as I feel guilty and I still have all her life admin and appointments! So I am still stuck working part time. I can only hope that there is some inheritance left at the end so I can have a pension to live on in my old age and pay for my care home (because theres no way I'm letting my children care for me, I love them too much).

Meanwhile, my sister visits a couple of times a year, despite not living that far away, and does nothing at all to help.

I do not agree with a person sacrificing their life to the care of a parent. Yes help out where you can but set limits.

I too won't have the same choices as my DPs as my DC will not be able to do the same for us as we are currently doing. DH and I are actively (but not very fast) simplifying our admin/finances and decluttering our house.

Having recently realised our 'new build' house is now 30 years old we'll be looking at whether we need to do any proactive updates to it soon too.

I was in a difficult situation with mil. We had primary aged dc, they weren’t even teens. So DH organised what she needed and it was a home. She could not manage at home so no choice. She had managed pretty well and her decline was quite quick. DH is an only child so there wasn’t help and he was running a mid sized consultancy business and had no spare time. A few years later, he had 2 aunts, both without dc, who needed care and one paid for care at home and the other got dementia and went into a home. Both well over 90. We simply were not going to care for 3 of them. DH had no help from any other relatives and the aunt with dementia had another nephew and niece but they were no shows.

For my own DM it was problematic. I wasn’t working and DCs were in their 20s, but it’s extremely time consuming and DM was very keen to stay at home and manage. The big problem is getting help. It was difficult to persuade her she needed it and then finding it was a nightmare. My siblings took virtually no interest and rarely visited. Eventually at 99, DM could not manage and she actually liked her care home. They were great and it was near me. I could spend more time with her and it worked very well. If you can get a good home, they have wonderful residents and staff. I got to know quite a few of them. So I would not fear a home but be choosy.

Your life matters too. We don’t all have a life we can dedicate to parents. I did what I could but maintained a life for me. I essentially now don’t speak to my siblings or their dc. They simply butted out and did next to nothing. I did ask for help and one more or less went nc (had children beyond school age) and the other had no dc. One worked part time and the other had not worked for years. They just left me to it. DD is getting married later this year and none of them are invited. 10 years ago, this would have been unthinkable. Aging parents do present family difficulties which can lead to divisions. I managed DM on my own and now I’m on my own - which I guess is sad.

Nothing.

My remaining parent was neglectful, angry and abusive when I was a child/teen and caused me so much pain that we have no relationship now and I would never disturb the peace that it took me so long to find as an adult to care for someone like that.

When I was much younger my parents always told us that when/if they got old and needed help under no circumstances would they want us to give up anything to look after them. Their joy is to have bought up happy healthy children to have independent lives. They both now live together in a care home, I visit at least twice a week and they love to hear about my holidays and what people are up to whilst at the same time being safe and looked after.

they are self funding and the money will run out but they are in a home where the council will take over payments so they will live out the rest of their lives there.

Problem is, and i have posted about this more than once, is that frail and elderly folk dont seem to be allowed to pass away peacefully anymore. 30 years ago , family doctor would attend, granny/grandad would be made comfortable and go peacefully. Now its blue lights to A&E, 3 days on a corridor, pumped full of antibiotics, rehydrated and sent home for a few more months of misery, not only for the patient but their family as well. Once upon a time pneumonia was "the old man's friend" now it seems to be "keep them alive at all costs"

I am the full time carer for my DH with dementia. When it comes to caring there are a number of different levels of care required and the choices will be particular to each family. Dementia is very challenging. I get one day off a week (where I pay for cover) and the rest is a 24/7 job which can involve sometimes physical and verbal aggression, lots of wee, lots of poo and a whole lot of other unpleasant things. There are some good times, but not many these days. I do not judge anyone at all who looked to a good care home for their loved one and I would not have done this when DCs were small, it would have been far too much.

I cared for my declining parents for about five years while mum battled horrendous dementia it was the worst period of my life. During this time my dad’s health declined and he had cancer and a brain tumour. Mum died while dad was in hospital recovering from surgery to remove the brain tumour which left him unable to walk, a long rehabilitation followed and I was with him every step of the way. When he came out of hospital he came to live with me dying some three years or so later in my home.
Caring for them took nearly everything from me for the best part of ten years but I kept them out of institutional care which I had promised to do. I couldn’t have lived with the guilt if I had abandoned them, I gave them everything I had and I won’t pretend it was easy but it was the right thing to do.
In my opinion society today suffers dreadfully from a lack of responsibility both for ourselves and for our families.
My husband and I have worked very hard to put aside enough money to provide (live in) care for us in our home should we need it. We moved to a house specifically designed by us to be suitable for old age. We eat well and exercise regularly in order to stay as able as possible for as long as possible, hopefully our boys won’t be faced with the commitment I had.