Burn out from looking after elderly parents, has anyone else gone though this?

[Backtothe80splease]

I have hated my life for some time now and tbh it's mainly because of my parents and I feel terribly guilty for saying that.

It's not their fault, they are 83 and 81 and although my dad is in good health my mum is not. She was diagnosed with Alzheimer's back in 2018 and breast cancer this year (Bc under control with medication). She also has limited mobility due to being bent over with osteoporosis.

Dad is not a natural born carer and relies heavily on my sister and I as we both live very near by. However, my sister works 30 hours a week and pops in on mum and dad around twice a week. Up until recently I was working part time (currently not working due to my health issues) because of this I tend to be dad's go to when calling for assistance and I find myself round theirs or doing something for them approx. 4-5 times a week.

I have written about this before and was advised to scale back what I was doing for them. During Covid times and since then I had found myself doing all mum's life admin, all her medication ordering and medical stuff, going to doctors and hospital appointments with her (as well as spending half my life on the phone to these people), doing all of their laundry, changing their bed sheets etc, making mum's lunch for when she is at her day centre...... Dad was happy to take a back seat and allow me to do this (and yes, I should have never let it escalate but I felt guilty).

However, over the last few years, with this amount of responsibility, caring for my own family (I have two teen dc, dh and a very anxious rescue dog who needs a lot of training and time), dealing with my own chronic health issues and being in perimenopause, I ended up feeling very unwell physically, emotionally and mentally and still do. I have regular heated discussions with my dh as he says I do too much for my dad and he believes that my dad does not appreciate what I do for him.

I have scaled back somewhat, I leave the laundry to my sister but find that I am still doing more than I really want to tbh. I still visit/pop in around 4 times a week, often 5. I was taking and collecting mum from her day centre twice a week but now dad takes her and I collect her so he has a few hours to himself.

Mum has a carer in every morning to help get her showered and dressed as dad finds this stressful but he's on his own with it on the weekends as the carer doesn't work weekends, I have suggested getting a carer in for Sat and Sun mornings to help mum shower but dad won't agree to this (he has lots of money and can easily afford it). Instead he moans constantly about how stressful his weekends are and I am certain he really wants my sister and I to offer for free. I won't offer because in all honesty I feel so crap most week days that I live for my weekend lie in. Between my sister and I we will visit them every weekend so they aren't completely on their own, (I usually pop in Sat and dsis Sun). My dad rarely has a day when he doesn't see someone.

But it's relentless, dad is not an easy character and although my lovely mum is doing ok with the dementia she is, inevitably getting worse and will continue to do so, I can't help but constantly wonder how much longer this will go on for? I'm 52 in March and have felt like I have been living on edge for the last 6 years just waiting, just surviving and living a half life. In all honesty I would like to visit just 2 times a week like my sister does but the guilt knowing they will be on their own a lot of the time makes me feel awful especially as I literally live around the corner from them.

However, in the new year I will absolutely need to find work again as I am not in a financial position to be able not to work although my dad is very old school and thinks dh should support me whilst I help care for them. When I get a new job I will be wracked with guilt that I won't be able to pop in all the time as I do now and probably end up feeling more stressed than ever.

I really just want to run away tbh. Has anyone else been in this position? How did you maintain your sanity and drop any guilt-ridden feelings over this?

My sibling is in this position and also has teens, but it has improved considerably since mum went into a care home. They want to go part time to cope and recover now. It sounds as though your parents need a lot more paid for care.

I keep suggested to dad that we need to get a carer in at the weekends and they could really do with someone coming in after dinner to help get mum into her night clothes as she often plays dad up and refuses to get into her PJs.

Come and join us on the Cockroach Cafe thread. We’re all in similar positions and it’s a good place for advice.
https://www.mumsnet.com/talk/elderly_parents/5141580-cockroach-cafe-late-summer-2024?page=17&reply=140578633

I felt the same when looking after my parents. Don’t judge yourself about your negative feelings towards them.

If your father has refused extra care then that’s his choice- he can’t guilt you about it. Remind him of this every time he brings it up. He seems to still have capabilities.

Do some nice things for yourself - simple things- buy a book, feed the ducks, coffee with friends.
Do something nice after every visit to your parents.

Try and make sure they have every assistance they are entitled to. Yes, I know this is more admin but it’s a step towards more freedom for you.

Tell your partner you want to do less but instead of fighting about it tell him you need his support and ideas on how to do less.

Mind yourself in all this. I hope things get better for you.

Would it be easier to stand up to your dad if you blamed your DH? (With DH’s permission of course). “DH is worried about my health and says I must cut down”

Have you claimed carers allowance and attendance allowance? You should.
You do need to get carers in more if possible, to ease the load.

We had MIL stay with us for 6 months and it was starting to make me ill.

Yr dad sounds naturally stubborn and difficult and would probably dismiss the idea, but have you thought about an assisted living flat for both of them? You can get them for couples. The staff take over ordering meds and will help a bit with putting on washes etc, they may help your mum shower, or her care package might be transferable. The only thing they don't handle is continence issues, at that point the person needs a care home. Do your parents have pension or savings or benefits that might pay for AL, it is about £400-£500 a week which is a lot I know, but factor in heating, council tax etc and it may be do-able.

I feel your pain OP. It is SO hard to deal with the guilt.

Similar situation to yours but my DM has carers 4 x every day (she's bed/wheel-chair bound and hoisted everywhere) but DF still has to do cooking, cleaning, shopping, keeping on top of the washing etc.

I do ALL their life admin...insurances for house and car, all prescription requests, pay the paper bill, sorted out a wheelchair accessible car, sorted blue badge, sorted Tena via NHS, phone/email everyone (care agency, GP, Social services).

I have a sibling but he went AWOL around 2 years ago so I'm on my own advocating for them both. And I work, have 2 kids, a DH, a life of my own... I visit them 2/3 times a week but end up doing something for them every day i.e. ordering xmas presents/cards atm.

this has been ongoing for 3 years. DF is on his knees and so am I. I had counselling earlier this year and was told to create boundaries, by saying 'no'. That's very hard when DM asks if I can take her shopping when she's not been out of the house for 3 weeks even though getting her to the shops is very stressful, but it's only for a couple of hours so I take her out. It gives DF a couple of hours break too.

If I say 'no, I can't' (for no other reason than I'm tired and stressed out already) I can't sleep for the guilt. It's just horrible. And it feels never ending. 😔

Edited: I've commented because I would also welcome help with dropping the 'guilt' feelings!!

he has lots of money and can easily afford it

^ This jumped out at me.

There are only 3 options: he does the caring, you do the caring or paid help. If he’s reasonably healthy why can’t he wash sheets, make a sandwich or go with her to the hospital?

The problem as you say is that once you start doing something it’s much harder to pull back – but it is still possible. You just have to be more authoritarian with your father. Tell him you can’t do X, Y or Z. If he can’t do it, tell him he needs to get a carer. Then stick to your plan of visiting twice a week, staying for an hour or two or whatever is your plan. Stick to it like glue. He needs to get a paid caret to ensure she gets her medication correctly, if he won’t do it. If he refuses to help her or get a carer, that would be neglect of your mother and you could get social workers involved.

Have you had a serious conversation with your father about the situation? I would tell him of all your responsibilities. But - if it were me - I would emphasise most of all that your DM should be living in a care home if he will not pay for the necessary at-home-care for her. Put the responsibility on him to resolve.

Thank you everyone.

I do need to set strong boundaries, I had some counselling this summer and this was mentioned a lot but it's so hard. I feel so sorry for my dad, it must be such hard work for him but his stubborn ways make a tough situation even worse at times, he really is his own worse enemy but it has a knock on effect for us all.

Sadly there are no assisted living facilities in our area, I have suggested they maybe move from their large bungalow to somewhere smaller as it is getting too much for dad to maintain but he refuses to do anything about it and tbh I think the move would confuse mum way too much, they have lived in the house for 51 years and any new changes are so confusing for her.

I never gave dementia a second thought when I was younger and it blind-sided us when mum was diagnosed as no-one in our family has suffered from this, we have zero experience of it. My parents were 'lucky' in some ways with their parents, they are both only children and all of my grandparents died fairly quickly, they didn't ever have to care for any of them. Dementia care is so hard for all involved, I hate it if I am honest.

I think that we are seriously going to have to think about care homes next year, sadly.

I’m sorry to hear your sadness. Sometimes things sort themselves out. Sometimes you have to play hardball. Maybe continue therapy for yourself ….

I know exactly how you feel. When I'm at my mother's (alzheimer's) I feel despair witnessing her difficulties, and when I'm not there I feel guilt and worry.

What I'm doing is seeking telephone counselling and studying stoicism to try and build the iron mind needed to get through this (lots of youtube videos on stoicism).

No advice just wanted to say you sound like you have been a brilliant daughter and you should feel no guilt if you reduce how much you do for them.
I spent my teens helping my mum twice a day before and after her work day . Caring for her parents . She was constantly exhausted and stressed . And health wise the worst she has ever been . She was so run down and still felt guilty she was not doing enough for them.
Ontop of that she was raising me and my siblings .
My grandparents refused any outside help at all .
I look back and wonder how my dm coped . Full time job and looking after them every day and 3 kids .
By the time she was early 50s they had both passed .
She still says now that from 40 till they passed was the hardest time in her life .
Even though she did everything they asked and they needed with a smile on her face she still feels guilty that she didn't do enough.

Hope you don't have a battle on your hands when it comes to insisting that your mum goes into a care home next year OP - your dad sounds so bloody mean now, so how will he react to CH fees? If they have capital over I think £23K (varies around the UK), they will need to pay something. Makes me so cross to think of parents who will not pay for anything while expecting their adult offspring to skivvy around providing free care. My ex's mother is like this, she is destroying herself at the age of 77 looking after her husband with dementia, his incontinence etc, because she won't spend their savings by doing the only sane thing in the circumstances, which is to get him a CH placement. Keeps saying you need to 'leave it as long as you can.' The older unmarried daughter is getting increasingly roped in. Yes, I know some people are motivated by selfless thoughts of passing money onto their children, but equally some people are just tightarses!

I agree with the pp who said to ask your dh for support to cut right down.

I don't know what to say. You just can't go on like this. They're not 'alone', they're married! I know of course that having a partner with Alzheimers is sometimes worse than being alone, but your mum didn't bring you up for your dad to turn you into a replacement for her. We're a society, a community. You don't have to do this alone.

If this were your job, we'd be suggesting you went to your GP and got yourself signed off for a month. So how about that? We can be your GP. Tell your dad you've got high blood pressure and have been told to rest for two weeks. Then REST (from them). Spend time with your kids and your H, the way your parents were able to do at your age. Do a bit of walking or swimming. (And no harm actually getting your blood pressure and cholesterol checked - caring is terribly bad for you).

There will be lots of phone calls. Get your dh to answer them. And before you do this, get the phone number of the duty desk at the Adult Social Services office. Every time your dad rings, get your dh to give them that number; if it's a health crisis, tell him to call an ambulance, or 111. Because you're going to have to force something to change.

After the two weeks, start visiting twice a week.

Don't feel a moment's guilt. You're not a child any more. Your mum (and your dad) might last longer at home with appropriate professional care. Or they might just struggle on somehow until one of them keels over. They are adults. It's their lives.