To be wallowing? How do I feel more positive?

[Echobridge]

I can’t see the wood for the trees today.
In a failing marriage, not hostile, but years of parenting 2 disabled children just tore us apart, we both know it’s over and we can’t afford to run 2 separate households just now so we sort of co-parent under the same roof. Not awful, but not emotionally healthy.
every day feels like Groundhog Day. I’m the primary carer for our 2
kids who have 24/7 physical and emotional needs. Days can’t be planned as seizures dictate the mornings and PDA profile runs the rest of the day. Some days feel softer; some hit harder with me being hit, sworn at, spat at. Not intentionally, it’s dysregulated behaviour. But it takes its toll.
my husband works long days and does what he can when he’s here but the kids mainly want me and because I do most of the primary care I’m simply
faster at meds, managing meltdowns and general medical care so end up doing it myself.
We feel very let down by the health system with very little at
home support due to community funding (it’s actually far easier when one is in hospital and well cared for, sadly)
that’s it really. I allow myself a good cry once a day and roll my sleeves up and get on with it. But there’s no joy. I just move from one care need to the next. Neither will be able to live independently, and life just feels….so very hard.
Thank you for listening.

I'm so sorry op that sounds incredibly hard and didn't want to read and run. Could you get help around the house possibly state funded?

That’s so kind. We do get 2
hours a week state funded but in practice it never happens because my eldest child becomes physically abusive with people in the house and the workers simply
don’t feel safe coming in which I completely understand,

I’d be crying a lot more than once a day

Are you able to get respite care at all? To give you and your partner a chance to breathe for a day here and there?

In reality I do

We are state funded for 6 hours respite monthly but sadly rarely happens due to the aggressive outbursts from my eldest, which puts respite workers at risk. And they are (completely understandably) within their rights to say they don’t feel comfortable. Mostly I get an hour off twice a month and have a costa by myself. It’s nice but never feels very long.,

I think the honest truth is I really don’t like my life but of course my boys need me and always will so I just have to find a way to make peace with it. and often I do, but some days, the really hard days, I break all over again.

It sounds very difficult 😔 and it is ok to feel the way you do. Sometimes a good cry can help us feel relief after a hard day. You are a great mum ❣️ and your children are very lucky to have you!

Is there any extended family that can help? Could you and your husband do counselling to help with your relationship?

That’s so very kind, thank you.
no family near us to help sadly. We tried counselling years ago and we both reached the conclusion our marriage is over but we simply can’t afford to split into 2 households with 2 sets of bills. It’s not hostile or anything, we remain friends and co-parents but it’s just not healthy long term living together without anyone being able to move on (not that there is any time in my day to find someone else, It’s a golden day if i get a shower uninterrupted!)
I am 43 and just feel like life is sort of already over. Hate sounding so pessimistic but I don’t see anything changing.

Six hours a month? That's a real shame... what even is the point?

That sounds very sad OP. If your boys are school aged your school might be able to help? In Scotland your boys would have a child's plan which would have involvement from all different agencies including social work and you would have money allocated to the boys which you could spend for respite. Can you speak to a teacher?

Thank you. One is just out of school age and the other has 2 years to go. They both have/ had a specialist school but need transport due to hoists and both becamemso combative at that point the driver couldn’t safely secure them in. The 6 hours respite is from my youngest but sadly the (wonderful) workers cannot be put at risk of aggressive outbursts.

The alternative has always been residential care but I couldn’t do that (absolutely no judgement at all on those who do, it’s just not what would work for my kids)

I'm sorry to hear that counselling didn't work, but t's good that you are able to coparent. Would your husband be able to reduce his hours to support more at home? Or would you both going part time be an option?

In regards to help, are your children's consultants able to put you in contact with charities or groups? Family Fund might be able to help?

Not sure if your children go to a school? But an EHCP could possibly mean that holiday provisions could be incorporated into it?

There's a charity I've heard of called Contact that works with families with children with disabilities - might be able to see what support / advice they could give.

Unfortunately my husband can’t reduce his hours due to our mortgage (he’d love to) and it’s slightly better financially for him to work more and for me to be the primary carer and work 1 x 13 hour shift a week. Family fund have been amazing and gift us a new couch each year as our one gets ripped up / faeces on it. They are very kind.

Dear OP, just sending love ❤️
My only advice was going to be to consider residential care, as I know a family who went down that route and it worked well for all of them, but I see you don't want to consider that and absolutely fair play to you.
You sound like an incredibly strong and kind person living a very hard life, and I wish you relief and happiness in every place that it can be found. Brighter days will come xx

Sending you solidarity. It's so hard for others to believe there is really no external support.
What happens during your husband's annual leave? Could you try leaving him to cope for a weekend ? Feels like you getting away from the demands is the only chance of some relief, however unideal.

Don't be so dismissive of residential care......quite often it's the making of SEN kids and breaks a lot of negative patterns of behaviour.

My husband has some mental health problems now just from the stress of everything, so his annual leave (2 weeks in summer, 2 at Xmas) we use to get jobs done around the house (always wall holes to fill, deep clean etc as we can’t get anything done in the day really if it’s only me) and he tries to rest a bit during his holiday as he’s in a very manual job outdoors in all weather and he’s not a spring chicken any more. The children default to me as their primary carer and can become very aggressive with him so it’s hard to leave them alone for any more than an hour or so. It’s always so nice when he is off work though, just to have another adult to talk to.

I’m sure it helps many, and I’m not dismissive of it as a concept, but for my kids with their complex conditions it wouldn’t be a good fit. They have severe separation anxiety and would find being away from me in a group setting incredibly distressing and triggering. Their behaviours stem from severe anxiety, stimming and dysregulation rather than “naughty” behaviour so a new busy environment would do so much more harm than good.