New to forum, looking for advice (long post!)

New to the forum and just wanted to introduce myself with bit a of a long post getting everything off my chest, as if I’m quite honest, I’m really struggling, and I’ve made some mistakes I’m not proud of. It’s a long one, so sorry in advance.

I am a carer to both my wife and our two neurodivergent children (Eldest diagnosed Autistic, youngest in the process of being diagnosed)

I (39M) met my wife (37F) 19 years ago, and I was smitten with her from the first date. She had some physical disabilities – hip problems and back problems from birth, along with eye sight conditions that meant she needed extra help in the dark etc. It meant she could never drive, and struggled to get the bus by herself, but this lack of independence never fazed me and was always something I was glad to help with. After 8 months together, she moved away for University, and I took it pretty poorly, and struggled to process it. Convinced it was just a matter of time before our relationship was over (due to distance etc), I began chatting online flirtatiously and sometimes sexually with another girl local to our area. I never expected anything to come of it, but that doesn’t change the fact it was a stupid decision on my part. My wife ended up dropping out of University after a few months on medical grounds, and we moved in together. However, my previous actions came to light, and after much begging and grovelling, she agreed to take me back.
Life remained fairly constant, until the birth of our first son. My wife slipped into severe post-natal depression, and after making it very clear that she intended to end it all, both herself and my son were hospitalised in a specialist mother and baby unit mental health unit for 6/7 weeks. After some trial and error to find the right medications, she was discharged, and I began to care for her at home. Thankfully my workplace is very flexible with working arrangements, and I have been able to maintain my full time job.
Things went downhill again once she came off the anti-depressants around 6 months later, and her body responded by triggering a fairly severe case of Chronic Fatigue Syndrome. On the worst days, she could take no more that 3-4 hundred steps a day, being almost completely bed bound, and even requiring carrying to the toilet. After a couple of years of getting nowhere with the NHS, and spending everything we had on private healthcare, things slowly started to look up. With step count reach 3-4 thousand a day now, the practicality of daily life began to return to normal, even if it meant the extra stress of having to rely on just one wage more long term than we planned, as she was unable to return to work.
Once our son turned 4, we made the decision to try for a second, and were blessed with another son. Whilst in the hospital my wife started getting odd leg pain – despite us questioning why she wasn’t given compression socks (as she was with our first), she ended up getting a blood clot, which progressed into a pulmonary embolism. As she was still breastfeeding, the choices we limited as to what blood thinners they could use, so I administered excruciatingly painful Fragmin injections twice daily for her. This was a price she was willing to pay, as she was unable to breastfeed our first son (due to medications etc). However, fast forward a year, and she noticed some odd lumps while feeding one day. After several weeks of pestering many different GPs that this was more than just a blocked milk duct, she was diagnosed with breast cancer. So began another trial for this poor woman – after mastectomy and the first round of chemo, she had an anaphylaxis reaction to the second chemotherapy drug, and almost died there on the cancer ward. It was only after a team of 12 doctors and nurses managed to save her that I was even told there was an issue. I’m happy to report that as of today she is in her second year of No Evidence of Disease on the cancer front, but the clots persist. After 4 years she has have 6 or 7 pulmonary embolisms now, and they are still struggling to keep it under control.
So where does this leave me? Well, from the CFS related issues onwards through our life, my role as husband and carer has more and more become carer and husband. I do all the cooking, all the shopping, all the washing. I handle all the finances, do all the taxi-ing of everyone to and from school / nursery / hospital appointments. Whilst my work are still very flexible with my working, this often sees me working until 1-2am most mornings to catch up, and then my youngest tends to wake up at 5:30am most mornings, while my wife and eldest sleep into ~7am if they’re not woken up by us downstairs by accident.
I’m tired. So tired. Yet I’m happy to be tired. I’d do this every day for them in a heartbeat. My biggest issue, is I’m lonely. I have no time for any friendship other than work colleagues I see once in a blue moon. Things with my wife have become less loving the more she goes through. Don’t get me wrong, she’s been through a lot, and I understand. Yet, just the thought of being able to hug her without being pushed away; to be able to give her a peck on the lips without being met with a turned cheek instead – all seems a lifetime away. This isn’t a result of the cancer, and body issues with the mastectomy etc – this all started long before then. Sleeping in the same bed means I have to lay on my side and face the wall, else I have to go and sleep on the sofa. I went through a period of trying to reassure her I was still very much attracted to her – the odd pat on the bum, telling her she looked nice in her undies etc – what I thought was an attempt to reinforce body confidence. Instead, I was dragged to a marriage counsellor and called a sex pest.
And here’s where it’s really gone downhill. On those mornings where I’d be working until the late hours, I’d be tired. Unable to sleep because my mind is still active from work, feeling rejected and alone – there were multiple occasions where I would talk to women online again. I would pay to chat to women, just to have that sense of feeling wanted. Sexually? Yes, most of the time, let’s not kid about, these women aren’t there just to discuss the night’s TV – but just to have that sense of someone reciprocating, scratched that itch for me. In my mind, I would tell myself that because it wasn’t real, it wasn’t personal, and it wasn’t cheating – but it was, it was emotional cheating, and when my wife found out over this holiday period, she has told me she wants a divorce / separation, and that we are done. Romantically at least. Perhaps the worst aspect of this all, was the fact that I did in fact sneak out when everyone was asleep, to help one of the girls I had been chatting to, that was relatively local (around 20 miles). She had previously mentioned my workplace, which made me trust that it wasn’t just some scam to rob me etc, and was a genuine need (it’s a University; I’m not sure if she was a mature student or a staff member, or if it was just a lie, but I had never seen her around). She found herself in A&E, and was stuck with no way to get home. So, with some sort of misguided sense of chivalry, I snuck out and gave her a lift. I never even hugged her. It was very awkward, and we barely spoke again. I messaged her a couple of times to check she was OK, but got very little response.
This was all several years ago, but has only just come to light. Now I find myself in limbo. I am going to continue to live in the house, because she cannot function independently, let alone look after the kids too – I will still (gladly) be performing all the same tasks, duties and help that I did before. The only difference now, is that I am doing so out of guilt and not because I’m so desperately hoping that one day my affection might be returned.
I apologise for the extreme length of the post. Congratulations if you made it all the end. I needed to get it all off my chest, and the context of everything I felt was relevant. I’m not looking for forgiveness. I know I was wrong. I don’t really know what kind of response I’m expecting. I just feel hollow, burnt out and don’t know what the rest of my life is going to hold anymore.

You have reached the stage of being what I call being a Clapped Out Carer. You’ve done too much for too long and are utterly burned out and worn out. I’ve been there too!. Something has to change! Why aren’t you getting any help with caring for both wife and kids? It’s late, so I’ll leave it there for now.

Hello and welcome
I am sad to read how tired and lonely you are.
Please disregard if these ideas are not for you.
I think you need to step back from the role of caring for your partner.
You can then focus on being a great Dad and seeking a new relationship.
I have used counselling to help me,
it might help you to have support of your own to help you to live your life.
Warm wishes Ula

Hi Gruffalo.

Just back from morning dog walk so need to sort a mug of tea to warm up and then start getting G out of bed and breakfasted. Will finish reading in a while and get back to you.

Just wanted you to know that other are reading and interested so you don’t feel ignored- that doesn’t happen on here.


How many family holidays have you had in the last 19 years?
How many days off, without any responsibility at all, have you had?
I’m nearly 72, I’ve have had lots of health issues in recent years, despite living a healthy life in many ways. My consultant told me that part of the reason was never having a break, which made me think. In the first 16 years of my brain damaged son’s life, I had just 3 full child free days - when I was in hospital having an operation!
I have the feeling that in your household the focus is always on the wife and kids. Is that a fair comment? You are not invincible. My husband died suddenly from a massive heart attack when he was 58, and we’d been caring for our son, his parents, my parents, and running a business together.
You sound very hard on yourself for “mistakes”. None of us are perfect. Caring long term is hard, we are all human.
How about trying to carve out just a little bit of good “me” time in the next week? Do you have a hobby or sport that relaxes you?

HI Gruffalo,

Welcome to the forum. I agree with @Ula . You need to be able to focus on caring for the children and yourself. Your wife needs care from care workers. This will benefit all of you.

Thanks for your replies.

To answer a few of the questions - I’ve not had any days off without responsibility since our first child was born just over 9 years ago. Before then I would spend a couple of hours each weekend playing for my local hockey team, but that was it.

As for holidays - we always have to go self catering due to food intolerances, so from my point of view little changes, it’s just in a different location. Even then, most of our holidays are actually trips to visit my father in law, who lives 400 miles away. I think in the last decade we’ve had two long weekends away as a family but that’s it.

I’m afraid carving out “me” time isn’t really an option. I’ve suggested resuming hockey a couple of hours per week, but my wife does not feel able to look after the children for that long by herself.

As far as home life goes, things are growing increasingly hostile. Yet I cannot leave, for she would be unable to cope looking after herself, let alone the kids too. I am currently sorting through the contents of the loft, to board it out and sleep up there.

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Hi Gruffalo
No judgement, no advice, just a short note to say I understand how much you longed for even the smallest sign of affection from the one you devoted yourself to. You tried your best. You’re only human and you have feelings too.
Best, A

In the past, the marriage vows have been mentioned.
My personal view is that you BOTH made vows to each other.
You are keeping your side of the bargain, but really, your partner isn’t.
When I was newly married, in 1972, I remember meeting an old lady about to have her golden wedding. Young and in love, I said how wonderful. Her reply shocked me. “Is it? I’ve been married to that for 50 years”.
I went home and told my husband.
I said that ever he felt like that, we should end our marriage.
Two lives totally ruined because in their day divorce was unheard of.

In your situation, where your partner is making so little effort to even be nice to you, to be horrible in public to you, I would leave. I don’t think your partner is respecting her vows, and can’t or won’t change. The effect on you is the same.
Of equal concern is the effect she is having on your children. Don’t they deserve a happy home life?