How do I do it all?
I’m 35 I work full time - I have two small children and for the last 12 months I’ve now become my husbands full time carer.
Honestly - how do I do it all without resentment that my life is non existent- I can’t do anything with my children because of my caring responsibility - and work are being difficult with my work/home situation.
How do you guys not go insane?
Hi @Underthesea, welcome to the forum. Most of us do go around the twist, as we suffer from burnt out. Have you got any back up or extra support? With two children that can’t be much fair on them. I would suggest trying to get social services to help out. We all try and find outlets to let off steam.
You need help before you have a breakdown. How old are your children? What is wrong with your husband? Have you both had assessments from Social Services, and a benefits check?
@Underthesea Hello hon, BIG BIG HUGS!
First of all…BIG BIG BREATH IN and OUT…please do that twice first
Okay, here’s another BIG HUG
I’m so glad you’ve reached out and you’re here with us on the forum…This is your first post so I’m guessing you’re completely overwhelmed …right now …in this moment.
Pause…you’re in the right spot for us to give you suggestions…
BEFORE Doing more…pause…what’s the ONE first thing you’re worried about.
If you need to talk to someone right now here are some telephone listening services: https://www.mind.org.uk/information-support/guides-to-support-and-services/seeking-help-for-a-mental-health-problem/mental-health-helplines/
If you’re feeling okay, breathe and write down the 1-3 MOST MOST important things
we all have our to do lists…BUT it’s important to know they will never end or stop getting bigger
choose the 1-2 things you can accomplish maybe 1 big and 1 small thing tomorrow
There is NO WAY you can do everything…
@Michael_1910123 and @bowlingbun have good questions - both leading to as I would’be said too - where and how can you get more hands on help? Family, friends for immediate support?
What have you already sorted…I hate to ask but can you share more details about what’s happened with your husband…was this sudden and very recent?
I’m going to pause there because that’s already a lot of questions…
Like Michael said, we actually DO go insane now and again…for me I need to walk-run-walk on my treadmill (which hasn’t been for a while now OUCH!), but also Coffee…and a lot of mindful meditation with breathwork…keeps me sane
BIG BIG hugs…breathe…we’re here with you now
My husband suffered a spinal cord injury at home at the start of 2023.
My children are 8 and 3.
We initially had a care package upon his discharge from hospital but it became clear very quickly they didn’t have a bloody clue what to do with someone with a spinal cord injury - especially someone young who has a life to lead. This meant slowly but surely to have any kind of life the carers dropped out and things became my responsibility to do.
I guess I was hoping 18 months down the line we would be in a position where he was more independent - but he isn’t - some of that is laziness and some of it isn’t obviously.
I guess I’ve just reached breaking point with work being more demanding - feeling endless guilt that I don’t do enough with my children and I feel like they are missing out so much - and just needing a godamn break!
We have very little support - by very little I mean virtually none.
@Underthesea, that is so wrong being left with no one, as you are not trained to help someone with a spinal issues, they should have tried to find a company with carer’s who have dealing with spinal issues. I would suggest speaking to the GP but also to the consultant that your husband is under as they might be able to help you. I would suggest you also contact the carers helpline as they can point you in the right direction but also citizens advice as you have been let down by the system but also it has left you as a family wide open as it left you all vulnerable especially the children as they can get bullied by anyone. Though you’re your main husband carer, so are the kids as they can be classed as young carers and there is support for them in that role.
Helpline and other support | Carers UK.
https://carers.org/about-caring/about-young-carers
Also contact your local councillor or mp as they might help.
Ok wow I didn’t think I’d be opening myself up to being told my children will be bullied because much husband has a spinal cord injury and requires care. Probably an uncalled for addition in your otherwise helpful comment. Thank you
Hi @Underthesea My wife had a spinal cord injury very nearly ten years ago. We’ve been relatively lucky in that Gill had a partial T11/12 injury, leaving her with some use in her legs - albeit that she’s in constant pain.
The main thing is that she’s very independently minded. I’m afraid we men like to see ourselves as Superman, and when things go wrong we make life more difficult for ourselves. Chances are that your husband needs counselling. I suggest getting in contact with the Spinal Injuries Association - We are the expert, guiding voice for life after spinal cord injury - SIA - they have a support line open weekdays 10-4.30pm
They can give you information and support, and maybe make suggestions to help motivate your husband.
What I would definitely do is look into getting more appropriate help in, and having a carers assessment for you and the kids.
@Underthesea…hi, welcome to the forum. I’m so sorry to hear what you’re going through. Are you able to contact adult social services and arrange for a social worker to visit so you can explain how tough it is and how you’re not able to cope how it is and see if you can get help and support?
Have you been offered any counselling? It’s awful when realise that all your hopes and dreams for the future have gone (I was widowed at 54 and disabled in a car accident 3 months later) and somehow you have to learn to live and laugh again adapting to a life you never wanted. I found counselling hugely helpful. Even the toughest have a breaking point! Do you know anyone else dealing with a spinal injury spouse? When my brain damaged son was small, I learned more from fellow parents than from Social Services!
@Underthesea, I didn’t mean to cause upset for you. I have been there partly my self not just as a adult where some people have got the wrong end of stick when I have opened up why I can’t always work. But in school it was hard as sometimes the teachers could be awkward if you were off from school and didn’t understand what the reason why. The kids were just as bad. But at least these days there are people and guidelines to help protect them. I always feel sorry for the kids and family when you hear the stories being let down by the system.
Hi. I suffered a spinal injury the day we moved to this house 11 years ago. I fell down a flight of stairs - 48 hours later I was screaming in pain in A&E and at 2am they sent me home with painkillers saying ‘you’ve broken your back but we’ll let an orthopaedic surgeon see you in the morning to assess it’. Thankfully no damage to the cord but I was terrified and it took months before I could stand straight or move properly. How your husband copes, I do not know. 
I helped care for my Mum who had MS and was rapidly wheelchair- then bed-bound, so I know of the frustrations and if he is in constant pain as she was it is terrible.
I think it is awful you are left with no support and it is not right. You are entitled to help and should be getting the right support. I am afraid you need to shout and demand in order to get things done these days.
Have you thought of contacting the CarersUK help line as they can probably give more guidance.
As for ‘how we all do it’ - I am not sure we do. We joke about having “super-powers” but it’s only because we love our Carees that we keep going. Graham says ot me that I should leave him, but that just aint gonna happen. You demonstrate your love for your husband and children by Caring. It’s the biggest sacrifice you could possibly make.
Probably not a lot of help to you, but just wanted to show you support.
Hi @Underthesea Thanks for sharing more about your situation
ohh gosh a 3 year old must be a ball of energy and an 8 year old learning and homework…I don’t have kids but just trying to imagine …geez
To build on @Charlesh47 (the super-husband who doesn’t need to be a superhero because we all know how amazing he is) the association also has support groups: https://spinal.co.uk/get-support/ It may be good to connect with other people in your area and tap into what they’ve already found.
As synchronicity happens, I was given this link by a contact who publishes a website like I do - this has lots of ideas about things at home…Please ignore if no help! there are some interesting tips I’m following up on tho! Living with a spinal CSF leak: making your home more accessible
Do you have friends or family nearby? What are the other mums and families of the school like? Anyone you can trust with the kids for a few hours? I’m guessing you’ve already explored all this I just wanted to get a sense of your support network for you and the kids.
I’m sending a VERY BIG HUG…unfortunately guilt doesn’t easily get shafted it’s a 
trying to not get this text banned…(use emojis!) You’re human, not a superhero…your love for your kids, and your husband is palpable…and it’s clear you’re Burntout!! I hear you. It’s absolutely understandable and you’re doing the very best you can…try to be kind to yourself in all this…we’re all SO good at beating ourselves up. HUGS
I’ve various ideas and thoughts, but no experience of what you’re going through but I hope the spinal cord injury resources and support group can offer ideas.
Thoughts?
Cannot really add much to the advice you have been given but welcome to the Forum. You do sound as if you have an incredible amount of juggling to cope with your husband’s needs and a 3 year old and 8 year old. I can only echo calling the Carers Helpline. Also if you have a local ‘Support for Carers’ then telephone them as they may be aware of local charities or organisations that could offer help. I know you wont have time to go to meetings but they can sometimes offer a telephone befriender - they have often been Carers themselves. I have found mine over the years a huge help and they are a safe place to ‘offload’ and can often make suggestions as they get to know you. There may be a waiting list but worth a go? I also echo progressing counselling although I totally appreciate your time is mega limited.
I don’t know a lot about Young Carers but I’m sure the children in Hampshire, where I live, have days out during the summer holidays, and there is a permanent social worker to arrange things for them. Maybe look at your L A website to see what they can offer. When my disabled son was little he kept going out for the day while his brother stayed home with me. One day, having dropped M off for a day trip, he said to me Why can’t I go to Marvell Zoo too? I simply couldn’t afford the cost. I dared ask if they could do things for the brothers and sisters too and had a horrible reply, I still remember how awful it was. “Can’t you at least look after your normal child?!”. Completely forgetting how he felt. Happily things have changed for the better since then.
Is your husband desperate for some male company? Is he bed bound or a wheelchair user?
Hi! I thought this was me when I started reading except my husband needs caring for his severe mental health which is leaving him bed bound some days and others super active. Though those active days have gone at the moment.
I’m also 35 and we have a 12 month old and a 12 year old and I’m trying to run my own business but finding I do not have the emotional capacity to do so as it’s a caring role. So I’ve changed to some teaching work and have just applied for carers allowance but don’t think they’ll accept my maternity pay as a benefit and not income.
How do we do it all?
We don’t, without collapsing. Or that’s the point I’m at, after so many people coming to give him support then leaving me to do all the care and not understanding that he’s still not okay then telling us there’s a 2 year waiting list. I’ve just accessed some community carers support but it is in the day time - is your work flexible?