Feeling burnout badly. First post here. Who am I now?

Carers' health and wellbeing
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Hi all

I’ve had an account for a short time, but only just making my first post today.

For backstory, I am 30 years old, and my husband is 37. We’ve been together for almost 12 years, and I love him dearly. We both have disabilities, but I am his carer full time due to how severe his disabilities are now. Last year he spent 6 weeks in hospital (half in ICU) due to pneumonia, and this year he has finally been able to access mental health support due to hitting crisis back in June (its been an ongoing thing for many years, but this is the first time he has actually gotten help from the NHS, as they have always found a way to avoid doing so until now!). He has mental health issues, and physical health issues. We both are neurodivergent too.

I have been his carer now for around 7 years, alongside working full time, as a carer! Before that, I grew up around caring, helping my mum with our elderly neighbours, and then caring for her when she became ill when I was a teen.

During the most recent mental health crisis I had to take time off work to look after him, as there wasn’t anyone else who could help. At the same time, I lost contact with my family due to a lot of bad history stuff, and a lack of support. We have two friends who are nearby who provide emotional support to a point, and one of them is soon to be my husband’s PA, but for various reasons this hasn’t begun yet.

I thought during the time I was off work that I had hit burnout. I felt drained, and isolated. I began therapy. But then this week, during my therapy session, I had a massive breakdown. Everything hit me at once and I realise I am now in burnout. I am back at work 30+ hours a week, in a demanding role, I am trying to complete my diploma which is attached to my work (it is required else I cannot work there), and I am still caring for my husband every hour of the day when I am not at work - and panicking and hoping he doesn’t do anything to himself while I am at work/that he is able to get to things he needs while I am there and doesn’t have an accident.

Now we have just had Christmas for the first time with limited to no contact with my family (his family are wonderful but sadly quite a distance away!), and I realised during therapy that I just don’t know who I am anymore. I don’t know what I enjoy now. I had a carers assessment from the local council and they asked me what I wanted to do for me, and I couldn’t think of anything. I just asked for help to go swimming again (something I did used to enjoy) but mainly so I could potentially take my husband swimming again, and go with the service users I support, and help with sourcing money for driving lessons (again, something primarily to support my husband and to make sure that I can get to him quicker if there is an emergency etc, rather than relying on public transport or costly Ubers).

I broke down in therapy, and I broke down again when I got home and apologised to my husband for doing so, as I didn’t want him to feel bad about it. I just do not know what I enjoy anymore. I don’t know how to find time to enjoy things anymore. Unfortunately due to my husband’s trauma, we can’t have other people in our home, so while I am struggling a lot to keep on top of things at home (and doing a terrible job, the place is a mess!), I can’t even ask someone to come in and help.

I’m at the point where I don’t even know what food I like, as I grew up with such a limited palate (partly due to my own Autism & ADHD, partly due to my parental figure), and now I rely heavily on my husband to introduce me to different food and I can’t even make a decision on what I want to eat without asking him as I am terrified of ordering something I wont like and wasting money (he is really good at knowing what I like).

I know I cant be alone in feeling like I’ve lost myself, but I don’t know how to get out of this. I don’t know how to find things I might enjoy.

It’s partly helpful just shouting this into the void, but if anyone has any ideas on how to get out of this chasm I would appreciate anything. I just need to be a human again and have some kind of identity outside of caring and I don’t know how to.

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Hi @MxMarmite - wow you have a pile of :poop: on your plate. (Hope you are not eating while reading this !)

Welcome and well done for getting up the courage to post today. I can sometimes seem daunting starting to put down on screen what you are feeling but it can start to help, not just by getting some support, but also helping you focus on what’s going on as we can all be too close to our own situation sometimes.

I am full time carer for Graham, my husband, since he had a stroke just three years ago. He’s had a cascade of health issues since, including the last four months which have been absolute hell for us. I know what it is like to be overwhelmed and at the end of your tether as that’s what happened to me in the last couple of months, I found I could not sleep, would burst into tears, wasn’t eating properly and didn’t know which way to turn.

I stopped working after his stroke - we ran our own business and had to close down very suddenly - and during his latest spell in hospital, I was spending 8-10 hours every day with him plus travelling as he was delirious for the whole of the first week. I spent time feeding him, washing and changing him due to incontinence and basically keeping him from a break-down.

Graham has been waiting for MH intervention from well over a year and is now getting some 121 sessions online (sigh) starting in January. He was diagnosed with PTSD as has struggled for some time.

My recent (second) Carers Assessment asked what I want and, like you, I struggled to work out what would be of use.

I currently have flashbacks to my parents situation - Mum had MS and Dad was, for years, her Prime carer and he was able to bring in private carers to help. I saw the toll it took on him and i fear that is/will happen to me. However, I love Graham so much I cannot say no. We have had a very quiet Xmas - didnt see a would yesterday. My nephew’s wife threw a hissy fit last Christmas and neither will speak to us. They used to help with things in the house and garden but now - nothing. I took on a cleaner a few months ago.

We’ve lost most of our friends over the last three years as we can’t socialise and G gets very tired easily. sigh Neither of us has any close family nearby. Thankfully we have some very good neighbours who helped recently walking our dog while I was at the hospital. We’ve been together for 27 years and Civil Partnership 15 years ago next week, so fairly committed !

Not sure what to say right now, but I wanted to welcome you so you know you are not alone. I am sure others will start chipping in shortly.

More soon.

Chris

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Welcome @MxMarmite
Your post is brave,
I am rather in crises myself and have looong day at work tomorrow,
But wanted to reach out and care as your situation moved me greatly
Warmly Ula

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@MxMarmite….welcome to the forum, so brave of you to reach out. You’ll find lots of support on here when you need it.

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@MxMarmite Welcome from me too. No easy answers to your situation. But you are certainly not alone and well done for reaching out.

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Hi @MxMarmite welcome from me too.

Totally get the I am now in burnout feeling and just being overwhelmed with everything. Whilst laudable that you’d want to use your swimming session times to take your husband, the carers assessment is there to see what would help you, and I know you say you no longer know who you are or what you want. I think if you were to have some private therapy sessions with a counsellor who understood disability and caring (from the carer’s point of view), it could really help you to find yourself again, also to give you somewhere impartial to offload; so it might be worth checking if some of the CA award could be used for that. Many therapists offer reduced rates or sliding scale, it is worth checking out this site for professionally accredited therapists.

https://www.counselling-directory.org.uk/

It can feel like a long road that is never-ending. If you have days when it is difficult to cope anymore, please also consider speaking to someone from Samaritans: 116123 they are there to listen and talk about anything you want to discuss. They can’t provide solutions but sometimes just having someone to listen and validate how you feel, can help.

Wishing you well. EEG.

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Your workload is impossible long term. You have to choose your priorities, and that is going to be tough. However I know from your academic ability that you have the basic skills but may need help to use them differently.
Start by writing down everything that is challenging you at the moment, then shuffle it in order of priority.
Perhaps split it into 2 lists, home/husband, and work?
Your husband can’t leave everything to you at home when you are working your socks off already. He needs to do something to help. Can you reduce your working hours slightly?

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