When is love no longer enough…? Poorly DH

[SillyScilly]

Name changed for this. Posting here for greater traffic.

Been married for a long time, together for even longer. During Covid my DH got very unwell and had a full mental breakdown. He was the breadwinner, I had a part time role. Before Covid he was high earning full time city worker. My job was term time, and centred around the kids (one of which has SEN) which meant I did all drop offs/ pick ups / holiday care / bedtimes. I enjoyed our life and it suited us.
During Covid everything changed, he got seriously unwell and ended up medically retired and suddenly I had to do all the caring and parenting. We moved out of the city to a lovely country town. All while dealing with engaging with the local mental health services while working full time in an admin job (needed to get a full time
job to support us). Anyway, life in the country is fab and me and the children are the happier for it.
however, now we are in 2025 and my DH illness isn’t really improving, he has regular bouts of suicidal ideation, is thoroughly unwell. He is under the care of the local mental health services, he attends therapy, takes all the medication he is prescribed, he engages with his medical team - and yet doesn’t seem to be improving 😞
Living with someone who is so unwell is draining and difficult- I have stepped up to the plate and taken on all the things that were previously shared between us, I run our home and keep our children going with all their needs and activities.
I have, I suppose, compassion fatigue. Life is sad and hard work and while everything in mine and the kids’ life is running as it should, I feel no joy and I worry about our children witnessing all the sad.
The one thing that I don’t feel is lack of love - I still love my DH and want to do right by him. But I don’t know if I want me and the kids to be under the same roof as him. He has openly said that me and the kids are what keep him alive. So I worry that if I separate that it will doom him. I have no desire to pursue any other relationship, but I would like a happier life.
what do I do? Any other mumsnetters been in this position and how did you navigate it? I feel so alone.

I also meant to mention that in between deeper bouts of illness he remains a devoted father massively interested and engaged with our children. He physically cannot do much like take them out on his own, but he engages with their studies, he plays board games with them, he watches tv shows and movies and documentaries with each child according to their interests. He makes sure their homework and exam revision is done.
he struggles with interacting with outside people so play dates only happen if I am around. He is a great father in between the depths of fear and chaos he experiences.

My feelings are totally divided - I love him but I don’t know how much longer I have in me to carry on with this. Our children our now year 9 and year 11.

Also it’s not Naltroxene as such but Low Dose Naltroxene.

As many other medications (eg melatonin), properties and uses of a medication are not the same at low doses agd high doses.

It’s not auto immune but it’s still an issue with the immune system (Mast Cells are part of it). Mast cells are releasing histamine (as well as other compounds) too much leading to all sorts of issues, often associated with histamine issues.
Hence cetirizine helps.

fwiw it’s very hard to diagnosed MCAS and often it’s done from seeing that anti histamine and/or mast cell regulators help.
If you’re feeling better with cetirizine, I’d strongly suspect MCAS.

In my experience, women will go over and above the call of duty, will work so so so hard and into the ground, up to the point where it is inferred they are not doing enough or extra is being asked.

At this point they retreat and question everything (and rightly so).

I think, you have given him everything you have and he still wants more.

Making you to come back from a weekend away, that you desperately needed (and prepared for) has pushed you over the edge.

GOOD!

you need to put in very strong boundaries with him or he will run you into the ground and you have children depending on you.

The initial crisis is over.

You need to put in place other systems that enable you to have a life and some happiness, if that means carers and weekends away then you must do it.

You have to do it. Get support for yourself. You need it.

Good luck x x

Year 9 and Year 11 - they are teens

My 2 are teens and they still have playdates - i.e. friends coming over. However this can only happen if I am around as DH cannot be around people large parts of the time, or be responsible for other kids. Visiting kids still need a bit of supervision and input, even if it is to offer food and drink and wifi passwords

My eldest was working from 16. I do think a 16 year old, and probably a 14 year old, doesn't need an adult to supervise drinks and WiFi passwords. But then we don't have an adult with the same struggles as your husband in the home. I wonder if you are minding him more than your children.

There are no easy answers @SillyScilly and I really feel for you. I hope in 16 pages of replies you have found something supportive and/or useful, in amongst criticisms of your choice to live in a house you could afford, unfathomable use of the word "third" instead of the oh-so-different "tertiary" etc 😂

Possibly, we are slowly transitioning to more independence for the children. But I am also mindful of not having visiting teens around when DH is in full twitching / shouting / super anxious / paranoid states. It's scary to witness and he does try and remove himself when he feels like that but if I am not around then he would feel he had to be 'present' in order to be responsible parent.

I also mentioned up thread that there is also SEN in DC so it's not quite as simple as you might imagine in terms of full independence.

Yes I have.

Yes that was my point really, that it might be more about your husband.

I'm not for a moment imagining it's simple, apologies if I gave you that impression. We have a lot of SEN and MH issues in our family too.

he struggles with interacting with outside people so play dates only happen if I am around

present tense

I can't edit my post but wanted to add, the OP has recently said she means teens friends coming over. Which is well beyond 'playdate' territory. But added to me thinking she'd said age 9 & 11 & even then I thought 'playdate' was stretching it.

However, given there maybe 'some SEN' they may need more supervision than your average y9 & Y11's.

anyway I'm leaving the thread now because I'm not well myself & don't think I'm adding anything helpful, except maybe my first post. But the OP hasn't replied to that OR several saying much the same thing. Still it's her thread, so I'm off so she can get what she wants out of the thread x

Thank you for responding but that sounds like you’ve been hugely scammed. Meditation etc will not perform medical treatments. I can see how it would relax you a bit but that’s about it. It’s been disproven to have any further impact medically.

Meditation is recommended for LC though.

LC dysregulates the nervous system. Medication calms the nervous system.

I’ve just spoken to an OT at the LC clinic. This is exactly what she recommends.

My cardiologist initially recommended techniques to calm the nervous system then I found the Suzy Bolt programme which is backed and recommended by medics.

I'm as cynical as they come and certainly haven't been scammed.

The only 'medication' I have taken is the supplement Augmented NAC (a powerful antioxidant originally developed as a drug but sold OTC). Everything else which has helped my recovery has been a lifestyle measure.

I've tracked my symptoms religiously and have seen an improvement over the months. Not a steady improvement - it's often 3 steps forward, one back - but I'm now back to an almost-normal life.

I personally can see how meditation Qigong etc… will work.

This will only work for people who are moderately affected though for the simple reason that you need to be able to move (legs, arms, standing …)
Meditation is great but recommended with some MH issues. I’m not sure it would be a good idea for the OP’s dh.

Not dismissing it btw. It’s just that LC (and ME etc….) can present is such variable way from one person to the next that I dint think it’s impossible for one treatment to be beneficial fur everyone. Much more work is needed to define sub groups and what treatment is most appropriate for each group.
Just like not everyone does well taking salt for POTS. (People with hyperPOTS are likely to respond negatively)

Yes, I agree - it's such an individual condition.

I'm not saying what worked for me will work for everyone but I am seeing a lot of people helped by this approach.

One of the problems is that most doctors in the UK don't have a clue where to start - there's not enough of an evidence base.

Just to add though - the Suzy Bolt programme includes people who can barely get out of bed - they join from bed and can still participate.

So, it might help the OP's DH if he was prepared to engage with it. There's a 2 week free trial.

This is amazing. It explains the whole thing and how people get ‘stuck’ and unable to recover. I cried all the way through, watch it in chunks.

I’m working with a private OT who is helping me.

Good luck x

l can give you her details if you like. She’s up north but will do online. It’s mind blowing x

The Suzy Bolt thing looks similar to what I’m doing.

Bolt's programme has included a live weekly session with an OT which was brilliant and helped me a lot. Those live (and interactive) sessions have finished now but are still available to subscribers on catch-up.

Saying that he wished to have cancer instead of anxiety is pretty grim and self-absorbed. Having had a lovely young neighbour just lose her battle to cancer after 8 long and painful years.

Well maybe that’s how he genuinely feels @XelaM
Bit weird of you to take offence to the words of someone clearly in terrible anguish on behalf of a neighbour.

Have you had life changing completely disabling Long Covid for 5 years?

Ive had it for 2. I can’t do anything. I often wish it was something that was visible, acknowledgeable and curable.

1- people die of LC too. And the OP’s dh is certainly at risk there
2- LC is a shit illness to have with very poor quality of life, lower than cancer, COPD etc…
3- you get support when you have cancer. You’re very likely to be dismissed (like you’ve just done) if you have LC.
4- there’s no support or treatment for LC. Very hard to keep hoping in those circumstances. Compare that to cancer, the variety of treatment, charity events, research etc….

HTH

Perhaps that gives you a tiny glimpse into just how utterly miserable OP’s DH must be feeling. At least cancer will have an end to it - remission or death. Nothing like that for anxiety or something like Long Covid or ME/CFS. Just endless years stretching ahead of you with likely no cure or improvement. Groundhog day. After a few years it’s hard to remain hopeful. An invisible illness doesn’t tend to attract much support, sympathy or understanding. I should know. I’ve had ME/CFS for 25 years. There’s no cure.

When Long Covid started being diagnosed in people I was selfishly happy because I hoped that maybe now CFS would get some funding for research. Unfortunately that hasn’t happened and instead it seems like LC has been lumped in with us CFS sufferers, but with added lung and respiratory issues.