To not want to be a parental carer in future?

[janeseymour78]

My mother has been a carer for the last ten years to her parents. She partially did this so that my grandparent could stay at home. At the beginning it was very hard and time consuming and she said 'if I get I'll like that in future please just put me in a home'. I would argue she has done barely anything with her life aside from this in that time.

The other day she said that homes are terrible places because anyone that goes there dies within months of arrival. She also commented on how much costs had been saved by keeping grandparent at home. So this change of tune makes me think she now expects me to give up my life in a similar way if need be.

I have always had a complicated relationship with my mother - she wasn't a great parent due to her own issues and acknowledges this.

Recently I have started thinking she is getting older and I should consider talking to her about if/when she gets ill in future. About how we would handle it. AIBU?

The prospect of getting old in this country can be quite terrifying, so I would do all I could to keep my mum at home for as long as possible, provided she was safe and comfortable there. However, any type of dementia would, in my mind, need professional care at some stage. It’s a very, very hard disease to endure, and not just for the sufferer.

@NeedleNoodle3

knittingaddict that sounds so difficult for you.

It will get sorted eventually, but this week in particular is going to be very tough. It's a bit raw right now, which is why the thread drew me in. I don't want to take away from the op's potential issues though as it's hard for lots of us.

Could she be bad mouthing homes now because she needs you to say they are great and put gran in one? Could it be shes got to try to justify her decision to give up a decade and has had to convince herself it was worth it?

The reason many older people die in a short period after going into a home is that for many families, they only reach the crunch point of not being able to offer care at home just before the end. Often the older person has had to put up with inadequate care for a while, so they decline faster than they would have done in a home earlier.

Many people last a long time in a home, this is evident from whole value of houses going. My grandmother lasted 7 years in a home, after living with my parents for years before. She had dementia but also mobility issues so it was when my parents couldn't lift her she had to go in a home, but beyond that her health was pretty good. After 5 years the value of her house had been spent. Last 2 were state funded. There was a suggestion they might move her to a different home that stressed my mum, but luckily that didn't happen.

@DixonD

The prospect of getting old in this country can be quite terrifying, so I would do all I could to keep my mum at home for as long as possible, provided she was safe and comfortable there. However, any type of dementia would, in my mind, need professional care at some stage. It’s a very, very hard disease to endure, and not just for the sufferer.

I agree. Feels like we're going backwards.

I'm not suggesting I'm going to abandon my parents. I will be there for them and help out where possible. But I have been feeling down lately about the fact I'm an only child and definitely won't have that sibling help and also both my parents are already quite reliant on me emotionally if not on a day to day basis. I see it seeping into over reliance quite easily as they age.

Some PPs have suggested im jumping the gun. I might be but my mother has not always looked after herself over the years and she does next to no exercise to stay healthy. I'm more confident my dad will be fine - I guess it is true you never know though.

@MargosKaftan I hadn't thought about it like that but I think you might be right.

She goes on about how she has sacrificed much of her life to be a carer. I keep quiet about the fact she didn't have to do this and chooses to do this. I think it borders on superiority - 'look what I gave up' - of course she has been through a lot and argues she has helped to keep my grandparent alive longer. She might be right. Is that a good thing? I'm not sure it is. Her quality of life is about nil.

I hope this doesn't sound heartless. We all should make decisions as we see fit and obviously I'm personally close to this.

@DreamTheMoors

My parents fed me, bathed me, sheltered me for the first 18 years of my life, and then put me through 4 years of university. They did the same for my siblings. As they got older and needed a bit of help, I found it exceedingly simple to spend a bit of time pitching in to help them. We had many good times and laughs and it was never a burden for me. I’d do it again in a heartbeat. I miss them both terribly.

They chose to bring you into this world, you didn’t ask to be born. It was their responsibility to keep you alive. Feeding, bathing, sheltering is the Misty basic and necessary of parenting. You’re making it seem like they went way above and beyond

*most not Misty!

I think some people who confidently say "I will look after my parents and they will never go into a care home" ignore the fact that by the time the parents need substantial care, the adult child may well be 60s or 70s themselves, with less energy, physical strength and quite possibly their own health issues.

It is possible for people without severe dementia to remain at home safely for a very long time, often for ever. We need a properly organised and resourced system that values paid carers, not to guilt trip people who for whatever reason are unable or unwilling to act as unpaid ones.

OP, some good advice upthread about having conversations with her now that are clear about the need for forward thinking.

Could you try "mum, not all homes are terrible, many people live in them for years - they end up living long enough to spend all their house sale money, keeps being on the news so there must be enough living long enough for that to be an issue. If gran gets so she needs nursing care beyond what you can manage, there would be nothing wrong with finding a good home for her. Just when it's beyond what family can do." Give her the "way out" of her position if she's struggling.

A friends mother said" you won't put me in a home will you?', her response was that she couldn't promise that, DH is nearly 10 years older than me, and has said the same, my response was the same as my friends. I'm 74 and don't want my children to have to look after me, and certainly don't want them doing personal care, upsetting for every one.

I’ll offer my perspective which is elder care does not happen the way you think it does . Alyears ago I was expecting my second baby at 39 . I had a 3 years My elderly mother died last year at 86 with vascular dementia

For all those people adamant they'll be caring for their parents... My mum was a carer her entire working life, absolutely loved that job and the people she looked after.

Then she did it for her own parents. It damn near destroyed her. She missed out on her own family life because she felt like she could never leave them. In the end she had a nervous breakdown because she couldn't cope any longer. Until you've lived it, don't criticise others (and don't call them selfish!)

My mum and dad have got their LPA's in place. No homes unless absolutely necessary, paid for carers and no personal care from children. That's what they want, and that's what we will do our bests to provide.

Having once worked as a carer I think some people have a romanticized view of what caring actually is. It’s not even IF you want to do it it’s that you might not be physically capable. Lifting people around is not easy. Most homes are not set up for hoists and lifts and all the paraphernalia you need if someone is immobile. Dementia can change a person from a loving and caring to nasty and aggressive. Sometimes people have no choice but to seek professional help. The mental and physical burden caring brings should not be underestimated.

As they got older and needed a bit of help, I found it exceedingly simple to spend a bit of time pitching in to help them.

It's all well and good when it's just "a bit of help". The problem is when it takes over your entire life and you end up being a full time carer with no life of your own. Unfortunately that can creep up on people without them realising.

This is a real worry for me too. My mother also said she wouldn't expect care and, like you, I have a very ropey history with her. BUT in recent years she's moved herself very close to me (her choice) and is going out of her way to help with the kids etc unasked. My mum does not do anything for anyone without expecting payback so I'm pretty certain she now sees me as her care option. I could cope with doing shopping, arranging a cleaner. But I have huge body issues even for myself never mind anyone else and the idea of having to help her toilet or bath makes me feel physically sick. Just don't know what we'll do as she also has a lot of savings but is adamant "the state aren't getting their hands on them" and would never give me power of attorney so I can hardly force her to use them can I.

My parents put both grandparents in homes and didn't do any caring - but I have already been told by them both directly that they don't want to go into a home themselves

It's good enough for other people and not for them and I find that a big ask to to honest. Especially when they didn't do it for their own parents.

I am not, under any circs sacrificing years of my life to protect my sibling inheritance.

I'm currently trying to steer my parents into accepting more outside care as they expect me to run around after them more and more plus take them to all medical appointments whilst my sister can't even be bothered to phone them.

I am grateful for everything my parents have done for me but I draw the line at personal care for them both and my dad wouldn't want me to do it for him either.

If that means that there's no inheritance for me or my sister then so be it.

It's an individual choice for a whole range of reasons. My 87 yr old mum lives with me. I consider me to be a part time carer. We have a carer every morning, I see to the rest. But as mums needs get greater we will probably increase the carers she gets. So it does not have to be all or nothing. However I appreciate not everyone wants their elderly parent moving in with them! For me looking at the state of homes during the last 2 years with covid I am very grateful Mum is with us.

@Clarabe1

Having once worked as a carer I think some people have a romanticized view of what caring actually is. It’s not even IF you want to do it it’s that you might not be physically capable. Lifting people around is not easy. Most homes are not set up for hoists and lifts and all the paraphernalia you need if someone is immobile. Dementia can change a person from a loving and caring to nasty and aggressive. Sometimes people have no choice but to seek professional help. The mental and physical burden caring brings should not be underestimated.

This is a very good point. My parents say they don't want a stranger bathing them but I would not be physically able to lift them myself.

People like to be all virtuous about keeping their elderly relatives at home but until you are there you can't possibly realise how hard it is. I shop and do appointments with my MIL she is lovely and we get on great. I can't do anymore and she was making hints about moving in with us. I work full time, juggle childcare for a 5 year old, husband works all weird hours and very much does his share picks up 50% but his hours spread over six days. She won't have homecare, won't consider residential care !
There is no way I could cope with trying to work from home, keep her entertained and be able to have any continuation of our lives. We go for long walks at weekends she would always be alone. Half the time I think it's just older age insecurities talking but when she starts to push for moreI have to be firm with what I can manage. I think people have unrealistic expectations. We are living in an age where often two people need to work and that doesn't work well logistically for caring foe older people.

Sorry pressed too soon! 9 years ago I was expecting my second child at 39 when my df dropped dead suddenly of a heart attack . As an only child I had to pick up the pieces for my grief stricken mother and myself and my husband living two hours away spent 3 years first of all watching her crumble & neglect herself slowly realising something was very wrong . We spent 3 years trying to persuade her to move closer to us figuring it would be slightly easier to manage the constant emergencies , errand & admin . The next 6 years including the pandemic have been like lobsters boiling . An endless death by a thousand cuts as we tried to manage it all and bring up a family . The very paradox of my mothers dementia was she refused to believe anything was wrong . She refused to accept cleaners , gardeners and carers . We could only bring a new level of care when another step down ( usually a hospital admission ) meant it could be introduced by stealth . As a self funded SS were not interested and my mother refused to have assessments of needs done . The MHSOP who diagnosed her dementia were useless . The pandemic left us broken and very desperate . We were left alone . It nearly broke my marriage and I had no choice but to abandon my career in education whilst trying to do it all with primary aged children I found myself lost in a world of bureaucracy , admin and the law which is woefully not up to the job . I spent 6 years leaping out of bed at 3am racing round the corner to meet ambulances or talk my mother down that it was not 2 in the afternoon or there were people in the living room. The consultant would dole out another drug and we were left to struggle on . I joked I had a fast pass to the a&e . Nobody helped until mum reached a particular tipping point and finally after a best interests meeting my mother was given 24 hour care . During the pandemic my mother was admitted to an a&e dept the night the city lockdowned . They rang me and said they would make her comfortable aka she was dying . She rallied and then the nurses let her ring me where she screamed down the phone at me . I have never felt so awful and broken . I howled in my backgarden . When the time came for the carehome she did not last long but they made her comfortable and ensured I could be with her at the end . I was very grateful to them . I have made sure I’ve made my wishes clear in writing . I’m not managing past 75 . I will use assistive care . I miss my mum and I loved her but the situation broke me and I will never get over it . I did what I could - if you can afford use professional care . The care system in the UK is broken it was more than happy to let me struggle on in extreme situations caring for a confused person with dementia whilst trying to bring up small children . People have no idea or they heaps of help or cash or time .

The thing with caring for a parent with dementia is it starts small and ends up consuming the carer. No amount of pitching in will equal the real demands.

The other thing is the authorities do not make clear that Alzheimer's etc is a terminal disease. Lots of jolly stuff about living well with dementia in the same vein as, oh I dunno, living well with diabetes, or chronic pain. Lots of fluffing over and fudging the progressive stages.

Those of you who just wouldn't consider or entertain the notion of not caring for a parent themselves, I truly hope your loved ones don't get a lingering disease, it kills the carer too. You get hollowed out as well.

I don’t want to be come my parents carer. I want them to live a long and healthy life and then die suddenly in their sleep at 93, having been at home with a cleaner and me popping in a couple of times a week prior to this.
That’s what I’d like, sadly I can’t choose so we will have to see what happens in the future and hope that it won’t be necessary. I’m a nurse and know how complex and full on caring for anyone let alone a relative can be. I also could never do it for my MIL- she is morbidly obese at 50 so there’s not a chance in hell I could even help lift her up the bed let alone mobilise around a room constantly.

"My two siblings have no children so I would think they should be in line before me! "

WTF? You chose to have children.

That’s what happened to us FilbbertyGiblets. Also people don’t understand what dementia is - there’s a whole spectrum between grandma nodding gently in the corner reminiscing about the past and people needing to be sectioned at the later stages . People do “ manage “ with dementia in the early stages but it goes on for years . My mother regularly believed she was living a duplicate house right down to the carpets, pictures etc . She was angry and regular took her frustration out on me as her world shrunk and shifted like sand She could at that time just about make a cup of tea and knew who the prime minister was . Dementia is a devious disease. 1 in 4 of us will get it . My mother had a small stroke in her mid 70s and it all stemmed from there . I started off organising online shopping and right at them end I was doing intimate care with professional paid carers because of the Pingdemic and the awful situation we were in