Overwhelmed by caring responsibilities and facing surgery with worsening mental health - I can't do this, any of it.

[ButteredBrioche]

I am so sorry this is going to be long but I have no one to talk to in RL. I really don't know what to do.

I have a long history of poor mental health (severe anxiety, depression, phobias, panic disorder), I was also diagnosed with adhd last year but tbh I keep that to myself because I know a lot of people have strong opinions over this but it does add some extra crap to an already crappy functioning brain!

In my 20's and 30's I managed to keep my mental health on an even keel with lots of counselling and cbt etc but due to the kind of shit life likes to throw at us at times my 40's and 50's has seen my mental health at the worst it has ever been.

From 2016-2021 I supported my ds through daily school refusal and awful, draining meltdowns (he has asd), it was very stressful and a daily battle. He is 21 soon and thankfully is now in a very good place and happy. Sadly the strain of dealing with this took a toll on my mental health and I was unable to catch a break because during this time I have also been helping to care for my mum who is now in the later stages of Alzheimer's (she was first diagnosed in 2018). Mum lives with my father who is not an easy man and dealing with the two of them has been extremely difficult and very very stressful at times, dementia is a slow and painful journey and takes down everyone involved - so many hospital visits (mum also has breast cancer, heart disease and fell fracturing her neck last year), long hospital stays and falls etc. I have now developed such a hospital fear because she was treated so badly whilst stay on the wards (dementia patients seem to be left to their own devices at our hospital!).

We now have carers in every day for mum but it's not always enough so my dad relies heavily on myself and my sister. I hate to say it but life is no fun at all with elderly parents, one with dementia and the other obtuse and hard to deal with. Dad refuses for mum to go into a home and SS won't help because they have money and we have carers in every day. The rest of the slack is down to us.

Alongside and on top of this shit, I have a long history of gynae issues (very heavy periods, anaemia and recurring uterine polyps with endless hysteroscopies and minor surgery). Eventually I opted for a uterine ablation 4 years ago thinking it would be the answer to my prayers but it turned out to be one of the biggest mistakes of my life, all I did was to swap heavy periods for no bleeding but pain instead. I pushed for a mri and in 2023 it was discovered I have adenomyosis (made worse by the ablation) and some endometriosis. I put up with it for another year or so hoping menopause would come and ease things up for me. However, I am in my 50's and annoyingly I still have a regular cycle, so I saw an endo gynae last May and he put me on a waiting list for a hysterectomy.

Tbh because I knew the waiting time is long, because I have a huge hospital fear and because I have so many plates spinning in the air I had to compartmentalise the anxiety of my health issues, shelved the idea and carried on hoping menopause would come and offer me some relief but my cycle is still 28 days long at 53 (and a half!) and now to add to my woes my hysterectomy date has come up for the beginning of October.

My mental health really is the worst it has ever been, I am in such a bad way and I don't think people around me really understand, I am at breaking point, I secretly cry on/off all day, I am exhausted from being the daughter of a dementia sufferer, I am worn out being a parent at times (although my kids are the best things in my life), I suffer daily gut issues so feel very unwell with nausea and an upset stomach throughout each day. I really don't feel I have the mental strength to go through such a big operation right now, the hospital and surgery fear, the pain and recovery and fear of all that could go wrong is destroying me. I can not empathise enough just how terrified I am, I go to bed crying every night and feel there is no way around this. I feel no one is listening to me and feel I want to give up and give in.

I managed to secure a telephone appointment with my consultant a few weeks ago and sent him some questions regarding a few things I am worried about but he was not interested and all he kept asking me was 'Mrs do you want this operation or not?', I felt like I was wasting his time, I had sent him this list of questions hoping he could advise me but he appeared bored and not interested in answering any of them (none were out of the ordinary/unreasonable questions), he just told me everyone is different and reacts differently so he could not answer any of my questions, so I now feel more terrified than ever and feel I am going in blind and unprepared for an op I am not sure I even want anymore. He has a reputation for having zero bedside manner and he does not put my mind at ease at all, he makes me feel like I am a number and nothing more, the only silver lining is that he is supposed to be a very good surgeon. I have had my pre-op and the nurse was lovely but she couldn't answer any of my queries because she obviously isn't a specialist, she just said to ask on the morning of the op but that's too late for me to make any informed decisions. My lovely GP has written to the department to see if there is anyone else I can talk to but they are so overwhelmed they haven't got back to me and time is ticking by.

Additionally to the above worries I have a large kidney cyst which was discovered incidentally during a ct scan 7 years ago, I was discharged after 2 years of follow ups. An ultrasound scan a few months ago showed it has grown even bigger and I had to have a ct scan last week so I am now even more anxious and concerned.

And to add more crap to the mix my dad was put on the 2 week cancer pathway a week ago, he's had a ct scan and now needs and exploratory op next week (looking at his kidneys, bladder and prostate) and I will accompany him with all of that because he has fallen to pieces and can't think of anything else and I can't let him go alone.

I can honestly say that my surgery has come at the absolute worst time in my life and I don't know who to turn to to help me.

I am sorry for the ramblings but I don't know what to do anymore. If I could put it off for 6 months I would but the NHS obviously doesn't work like that, I would end up back on a two year + wait and I can't afford to go privately so am in shit street.

I don't know what to do, it all feels so hopeless and the stress from worrying about this op, all that could go wrong and the long recovery is just too much right now. I don't know who to turn to but I feel I may have some kind of breakdown before too long.

I am seriously considering getting in my car and just keep driving and not coming back.

For the operation it will help. You need to weigh up pros and cons, cons obviously being 2 year + wait whilst being in agony. Pros being it will potentially help a lot with the pain. Could you ask your gp if they can refer you for counselling? You should be able to get 6 sessions on the NHS.

The issue that I have now is that my pain is 'only' during my period, so for around 5- days per month, the rest of the time I am not too bad, my mental health is the worst thing right now, I feel as though I am close to some kind of breakdown. I really don't know how I will get through the op or the recovery without it having a detrimental effect on my mental health.

I do need the op because the ablation was a huge mistake and I worry if I were to ever develop uterine cancer I would never know at the early stages because I wouldn't bleed post menopause due to the scaring around my uterine lining so eventually I will need the uterus removed but the op has come at the worst time and I just don't feel at all prepared for the fall out from it (I know my mind and I know it will have me in a state of high panic for weeks after). I have also so very stupidly joined hysterectomy support groups and was unprepared for all that can go wrong.

My GP referred me for advanced CBT 6 months ago but it could be a further 3+ months so doesn't help me atm unfortunately.

I really don't know how I can get through it all.

Do you keep posting about this? Several times.
Parents have money, won’t spend it, adult children burdened. Or is it just that common?
If you want a different life, with regards to your parents at least, you have to make different choices.
But then you keep being told that.

OP, you are doing your very very best. Life is very hard for you at the moment.

Is it the right time to have the op? You can always get on the cancellation list for next year. That means you can put it off for a few months. Life might be easier next year.

I am the daughter of a dementia sufferer. It has ruined my life. For over a decade. It makes everything else overwhelming and hopeless. I eventually chose myself. You have to. Your parents need to be in a care home and you need to go once a week to visit at most. It’s the only way to save yourself. You need to see this as looking after your children. Which it is. Because you are central to their welfare. You need to step way way back from elderly parent care.

I think you need to have a very honest chat with your dad and tell him from today onwards you will have to step back from helping them so much. Your dad will have to manage with carers or put your mum into a care home where she will be looked after. He's probably not doing it as you keep running to the rescue. You need to put your own health first op, you cannot pour from an empty cup.

But I have taken on board the suggestions of others on here and I do make different choices. I arranged for mum to go back to her day center but dad is cancelling it. We looked around care homes recently to get mum booked in for respite for when I am recovering, dad had agreed and now he has decided he doesn't want that and he will cope her at home and with the carers coming in for 30 mins 3 times a day but I know it won't be enough. I wanted something more structured for when I am recovering and he's gone against my wishes. I wanted to not have to stress or worry about them when in recovery but he has changed the goal posts yet again.

I have had SS come to do a care assessment and they are happy with mum's care arrangements and can offer no other advice because my parents have money. All they have been able to do is give me a list of homes that offer respite.

And now my dad is on the cancer pathway. What am I supposed to do, just turn leave him to the hospital appointments on his own? It's so much easier said than done, I am doing a lot less than I used to as it is.

I keep thinking this may be the best option but I am worried the hospital will put me right back and it would be another couple of years wait? I know the gynae department at our hospital is in a bit of a mess atm.

In an ideal situation I would defer the op, get my dad's health sorted, I'd ideally like to see mum being cared for properly in a nice care home, then I can get my CBT under way and try some different meds so I can feel calmer and more collected for surgery? I am not even sure if this is an option or who can help me with this?

I am sorry you have been through caring for a parent with dementia, it really does ruin your life.

I would love to see mum well cared for in a lovely home now, we have been avoiding it for so long but the time has come. I am hoping dad's health issues are not going to be too serious because up to now he has been in great health just a very difficult man to deal with, he can actually look after himself fine but mum really does need better care but he refuses for her to go into a care home. One moment he will agree then changes his mind and we end up letting people down which is very embarrassing.

I hate dementia and my dear mum would have hated this for my sister and I.

You need to have the surgery, what you are doing for your DPs is not going to be that affected by you having this operation, you aren't lifting them or anything and your sister can take the reins for a week or two. It's no bad thing for your dad to see you as a human with your own problems and needs as well.

It might also improve your mental health to be actually taking control and improving one area of your life, taking one source of stress away. The trouble with kicking things down the road is that other things happen and the pile gets bigger and heavier.

Change the mindset to the operation, you need it, that is non negotiable and then go from there with all the other pieces falling into place (or being forced to be dealt with because they are a question of when, not if, and currently the when is when you break).

It's an awful lot to deal with, well done for holding it together so long.

You just need to step back completely from your parents. They have money to fund proper care but your dad is not allowing that to happen. What will be, will be. He will have to get his hospital appointments and treatment sorted. I think you will find that if you step back completely he will quickly see that things need to change, but at the moment they don’t because you keep the plates spinning so he doesn’t see a problem. You are choosing the hard route for them and yourself by continuing on as you are.

Re the hysterectomy, would it help to think how common this is? Very much bread and butter stuff. The stuff you read online is the very small group of people not happy, which makes them ‘noisy’. You are not hearing from the 99% of people who don’t have an issue

OP you have to focus on your own physical and mental health.

You have to make it clear to your parents that you can no longer support them and stick to that. Then they will have to face reality.

This. Your father is being very selfish and not thinking about what is best for your mum or for you.

Well, yes. That’s exactly what you do. It’s crisis time.