Would you spend most of your time caring for an elderly parent?

[ImaHogg]

I have a real dilemma in my life right now, I am probably digging myself a giant hole and potentially causing myself future issues.
I’m 48, married with a 13 and 15 year old and work very part time hours.
I am and have always been very close to my parents. They live around the corner from me. Dad is 80 this year and mum is 78.
Dad is in good health and up till last year was riding a motorcycle. My mum has Alzheimer’s, she was diagnosed 3 years ago and as is the nature with this wicked disease, she is getting steadily worse. She is also in constant pain with osteoporosis.
My dad does not cope well at all, he gets so angry with the diagnosis and takes it out on mum as though she is forgetting on purpose! He says his life is over and he feels trapped and can not even go down the shed on his own. He does the cooking and washing up but really doesn’t do any other housework. He thinks if he keeps badgering my mum to do it she will suddenly ‘remember’, which obviously won’t happen, so subsequently things build up, laundry doesn’t get done, bed sheets go unchanged etc. Even mums hair doesn’t get washed regularly (something my sister and I are going to have to do from now on in).
I spend most of my spare time helping out. Every week I take mum out to give dad breaks, I arrange all her hospital and gp appointments and take her to most of these, I order mums meds and collect them too, I have arranged for her to go to a day centre once a week and I take her there and collect her (although she hates it so will probably cancel it soon!). I have organised financial things for them ie mum now gets attendance allowance and dad council tax reductions etc.
I go round 6 days a week.
My sister only goes once a week, she has no children but works full time, she will do some cleaning but that’s it as she says she is too busy (she’s home most days at 4pm!). She too lives nearby.
Obviously with this disease things will start to get much, much worse and I can already see changes, mum is very depressed and just sits in the living room a lot of the time, she often looks vacant and her short term memory is shot to pieces, she cries a lot. She does perk up when I take her out for a drive etc but goes downhill once she is at home.
I appreciate living with a dementia patient is bloody tough going but don’t think my dad helps as he puts her down and tries to make her do things which the Alzheimer’s just won’t let her do.
I can’t arrange for a professional carer yet as my mum is still aware of things and says she does not want a carer or a stranger in her home, it makes her feel useless.
I am so stressed with it all and find the burden of caring/worrying about my parents welfare 24/7 overwhelming. It feels like caring for children.
To add extra woes, my dh says I am doing too much and we are starting to have heated discussions about it. He thinks my dad is being very selfish expecting me to always be there to do so much and that he should be doing a lot of it himself (ie the laundry, changing bed sheets and washing mums hair etc) but I know he won’t do it so I feel stuck between a rock and hard place, although I admit I wouldn’t want to put this burden on my own dc.
It also pisses off dh that dad doesn’t offer me any money for the help I do even though he knows I struggle a little financially. Mum and dad are very financially comfortable so that does sting a little tbh.
I am concerned how much I could take long term as I already suffer from anxiety and depression. I can see as the disease takes hold I am going to have to help more and more. This will have an huge impact on my life and my dh/children’s too.
AIBU to give up so much of my time and energy looking after my parent? Would you do the same?

Your sister needs to pull her weight
I disagree, the sister has the right idea, firm boundaries and refuses to be guilted into taking on an unsustainable burden!

Yep. Sister is being sensible here. As difficult as it is I think OP needs to take a leaf from her book rather than trying to force her to do more (as others have suggested: dropping the parents off at her house for example, what the fuck?)

Yep I think you should step back and just do things for your mum like washing her clothes not your dads. Also taking her out. Let your dad call you lots and have an honest conversation with him explaining that you need him to take charge of the cleaning or get a cleaner as it’s too much for you

And I note very few people have said the same about OP’s brother.

This is how women get disproportionally roped into caring work at great detriment to their own lives, careers, and wellbeing.

Also tell him you’re skint and need to find paid work

What brother?

Thank you all and again to all of the carers out there, it really is a hard job, paid or not.
Lollypop4 you would be the exact type of carer we need right now, I’ll have to do my research and see who’s in our area.
ImaginaryCat he’s keeping the money for care home fees apparently, I won’t see any inheritance it will all be swallowed up by then. I was at the solicitors when she told him that legally he can give away up to £3000 per person per year to whoever he pleases without it being seen as a deprivation of assets, yet he still won’t every gift any money. That does make me feel unappreciated, I can’t lie about that, it’s upsetting.

I agree that your sister has the right approach here. Just because she doesn’t have children doesn’t make her time outside of work any less valuable than yours, and you are choosing to spend it allowing yourself to be used as a free carer by your parents.

@Saltyslug

What brother?

A few posters earlier in the thread mentioned OP’s brother though I can’t find the reference now! If they/I are incorrect then fair enough. Doesn’t change that the solution to this isn’t to shunt it onto OP’s sister though :)

The more you say no, that doesn't work for me, I can't help with that, the easier it will get for you. I wish I had learnt that years ago but I gave in for a quiet life and because I didn't want people to think I was being uncaring. I've learnt late in the day how to turn a request for more help back on itself, e.g. I was rung yesterday and told my disabled sibling, who falls throughout the day and night was going to be given a fall pendant to wear, and that I would be the person who would be called every time this happened. A year ago I would have been upset and put upon and said ' oh ok then'. This time I said not I'm not doing that, so I suggest you give your number for the contact' to the social worker who suggested it. Practice putting your own needs first.

Anna727b, how true.
People who haven’t had to cope with dementia usually don’t have a bloody clue.,
But that doesn’t stop too many of them making pious comments about what other people ought to do.

@AngeloMysterioso

I agree that your sister has the right approach here. Just because she doesn’t have children doesn’t make her time outside of work any less valuable than yours, and you are choosing to spend it allowing yourself to be used as a free carer by your parents.

It’s not that I feel her time is less valuable than mine, not at all but she has a tendency to txt or WhatsApp me asking me to this or that for m&d yet declare that she can’t possibly do it because she’s working. She thinks because I work less hours, I must be at home twiddling my thumbs.

LimeCoconut no, there’s no brother - that I am aware of!

My family are traveling towards the gates of hell and there is no u-turn. How can I possibly step back from that when I know that’s where my mum and dad, who have been there for me my whole life, are heading?

Because it's only by backing off that they'll get the ongoing professional help they need. As PPs have said, the sad truth is that as long as you're prepared to do it you'll get precisely nothing

You suggested yourself that you should never have got so involved in the first place, so here's your chance to step back - not just for your own sake but theirs too. That doesn't mean you can't help at all of course (though that's what you'll need to say to social services) but it sounds as if the time to prioritise your own family is now

No I wouldn’t. But I think it’s because we’ve had no help whatsoever from our parents when we needed it with young DC. So I don’t feel any moral obligation to provide elder care.

I think I’ll clash majorly with DH though about his mother. We’re planning to build a garden office with a kitchen and small bathroom. I overheard DH mention it to his mother with “well, it’ll be good if you need to move in”. Over my fucking body will that be happening 😂 Happy if one of our DC wants to live there, but no way to MIL. She’s off enjoying her own retirement now, she won’t be ruining mine by living on the same plot!!!

I haven't RTFT, but I have read all of your posts, OP. Bless you, you sound really lovely but also like you're functioning at the edge of your capacity and don't have much more to give. It's so hard with trying to get people help that will make their lives better when they don't want it - especially when you feel you're being held hostage to keep doing stuff because if you don't do it no one will.

I think you need to have a good long sit down with a cup of tea and a bit of paper and work out some boundaries. You've got your own little family that need you too, and you and they should come first. It's not very nice to say that your parents will have to take what's left over, but that's the reality of it.

So imagine you had a blank slate of your schedule and your budget and your energy, and work out what you CAN sustainably give to your parents. I say sustainably because they could hang on in a slow decline for many years now. How much money? (I don't mean handing over cash as it doesn't sound like you do that, but petrol etc costs money) How many hours a day/week? In person OR on the phone. How much notice do you need? Any jobs you especially like or hate doing? Write it all down for yourself, sit with it for a few days, talk it over with your DH.

When you're happy with it, let them know. You don't need to go into some big guilt-ridden explanation about how hard you've been finding it but how much you want to help them. In fact, it's much better if you don't! Just say, "Things have changed a bit for me recently and I won't be able to help you out as much as I used to. From now on, I can commit to XYZ but nothing more than that. I'm happy to help you find a cleaner, carer or similar to pick up the slack, but I won't be available."

Then you have to really really commit to doing what you said and no more. That's why it's so important to get the "sitting down with a cup of tea" bit right so that you actually feel happy with the amount of help you're offering.

FWIW, I don't think in this day and age that you should feel guilty for not helping them. I don't plan to help my parents with much at all. They're not very pleasant people so I don't feel much obligation to them. I fully expect that they will expect me to do the lion's share of caring and my brother will get away with doing shit all as usual but still be praised to high heaven. In fact, DH and I were talking about this the other day and the clever money is on my brother's wife ending up caring for them in their old age because I will have moved to the Outer Hebrides to get away from them, brother will do shit all, but it's always women who get guilted into doing stuff and my brother's wife is too nice for her own good (and brother will bask in the reflected glow).

You obviously want to help your parents out, but you can choose how much of yourself to give, and it's good for all concerned to have explicit boundaries.

@GETTINGLIKEMYMOTHER

Anna727b, how true. People who haven’t had to cope with dementia usually don’t have a bloody clue., But that doesn’t stop too many of them making pious comments about what other people ought to do.

It does amaze me that dementia is the UK’s second leading cause of death yet so many people I know (including most of my friends) k ow so little about the disease and think it’s just about simple memory loss. I just wish that was the case, I really do.

@CoconutChair

No I wouldn’t. But I think it’s because we’ve had no help whatsoever from our parents when we needed it with young DC. So I don’t feel any moral obligation to provide elder care.

I think I’ll clash majorly with DH though about his mother. We’re planning to build a garden office with a kitchen and small bathroom. I overheard DH mention it to his mother with “well, it’ll be good if you need to move in”. Over my fucking body will that be happening 😂 Happy if one of our DC wants to live there, but no way to MIL. She’s off enjoying her own retirement now, she won’t be ruining mine by living on the same plot!!!

God yes, never go down that route lol!

I’m a way you don’t need to wait for a social services assessment. Your parents will be paying for any care your DM needs and any help with running the house. I know the problem
Is them accepting care but if they do accept it you can advertise privately for what you need or approach a care agency.

If they get attendance allowance they absolutely can afford help in the home.

My Mum, who lives alone and can manage pretty well apart from cleaning and bed changing, pays for someone to come in once a week and help her with this plus putting shopping deliveries away. She could afford for it to be twice a week at the level of allowance she is given and might well move on to this in due course.

Big bonus is that she really likes the woman who comes to help her, she has been a great positive addition to her life.

I actually think he’s right keeping the money for care home fees rather than gifting it. That way you can choose the best home rather than have the local authority choose it. My mil’s whole house sale has been spent on her care, not a penny went to us, but she’s been safe in a lovely dementia home for the past six years.

PerspicaciousGreen, thank you for that. It’s true, it seems to be a given that women will always shoulder the burden for all family matters, that’s just not fair and I certainly don’t want that for my daughter’s future. And yes definitely go buy yourself that place in the Outer Hebrides, don’t even start what I have, it’ll do your head in!

YABU. No one expects you to care for a severely mentally and physically disabled child alone - schools, carers, charities, SS and the NHS pile in.

Dementia’s worse and often it lasts longer.

Spend time with them yes.
Free housework. NO.
Mobile hairdresser can call in twice a week .
Sheets to to the laundry. Washing to the launderette use the wash, dry & fold service.
Ironing collection and drop off service if necessary.
Gardener for grass cutting and weeding.
Cleaner will change the bed once a week .
Leaves you free to have a cup
Of tea and a chat or cook lunch.

@randomer

not keen on a carer? Is she keen for you to give over your life to her then?

Not really no, when I say not keen I mean she wouldn't be as comfortable as she is with a member of her own family doing it. I also wouldn't feel happy knowing she wasn't as comfortable as can be. This is something I have chosen to do and for the foreseeable then it's what I will do. I've explained that when or if I think her needs exceed my capabilities then she'll be getting a carer and maybe at that point she won't care as much I don't know. The way I look at it was she was a good mum and looked after me very well when I was little and now I can return the favour

I have no kids, I am not really a career type person, my partner is fine with it and at the moment it's within my capabilities