Disabled Partner Support

[DreamMachine]

Hey guys, I’m 29 and my Wife is Disabled. She’s 26 and has been diagnosed with multiple conditions, the main one being Fibromyalgia. I completely understand her needs and do my best to support her. Over the last year or so, I’ve been really struggling to cope. I don’t get a day off, no one asks me how I am or how I’m coping with it. How hard it is to care for someone with disabilities. I do everything for her, cook, clean, do washing, dress her, bathe her, sort her medication out, look after our animals. I don’t want to sound selfish because she doesn’t get a day off from her disability, but when is it my turn to have respite? I would never let on to her that I’m struggling because I don’t want her to feel like a burden because she isn’t. Being young as well I feel doesn’t help. I don’t leave to house anymore for multiple reasons, I don’t drive and live in the middle of nowhere with no footpaths and everything is miles away. (I moved here when we met). We don’t have friends either so I have no one to vent to. I just wanted to be able to go somewhere on my own and have a good time. Whenever we do go out together, it’s not for long because she’s fatigued or in too much pain and have to cut the day short even if I’m not ready to go home yet. All I want is a week respite from caring for someone and just focus on myself for once. I don’t know if I’ll ever be able to get that but maybe one day. I just wanted to get this off my chest because I have no one else to talk to. I know there are plenty of others out there in my position. I just wanted to know how you deal with it without ending up resenting your partner. How do you cope?

[Coachtrip]

HiI am sorry to hear that you are having such a difficult time. As carers we need to look after ourselves as well as the person we care for and this all sounds quite overwhelming for you at the moment.

Carers UK has a helpline and good information on their website. They can signpost you for helpful contacts, take more complex queries through email and have online meet ups available. They can also help with benefit entitlement if you need to know about that. It sounds as if you need a break.

Talking to someone is a good first step.

Their number is 0808 808 7777 Mon to Fri. 9 am to 6pm.

Wishing you both well.

[Al10]

You say, 'All I want is,' but I fear you can't put this into words to your wife? You can't think how to ask for your needs to be met without seeming mean or selfish or making her feel bad about herself. That is a bind. But still, you need to figure how to have that conversation. If you don't, likely, you will crack and probably turn in to the mean guy you don't want to be, and leave. It doesn't have to be like that.

Frankly, if she is very dependent on your support, you do need to think about emergency plans. What happens if you can't look after her for an afternoon, a day, a week, or more? Who are your support team? Who does she ring if you are incapacitated? Gloomy thoughts for someone so young to contemplate, but poopy stuff does happen. Indeed, self sufficient sorts can engineer all sorts of dangerous situations to be in. All in a days busy-ness with animals, and stuff. My partner years ago, fell out of our loft. I don't know how? DIY is such fun... And messy, ew!

Certainly you should reach out to the carers support group see what they can suggest. If they can't help, see your GP and tell them you need to start looking after yourself as a carer and that means you need support.

Can you think about moving nearer the shops and services you need? Or getting a car? Learning to drive? You kinda need a long term plan. Short term, being a nice guy caring for your wife will get you through, but long term, you will get tired. (everybody does!) At that point you will likely feel resentful seeing your life tick away while you are busy, not fulfilling your dreams. Lots of carers make themselves sick devoting their lives, voluntarily or otherwise to a loved one 24/7. Exhaustion is too common. As hard as it is to be told, all lives must have balance to remain healthy. You are allowed to ask for help.

Maybe, you and your wife could talk together about your joint and separate dreams and plans? What do you both want out of your lives? Have any of your goals or plans changed now reality has set in? It's OK to revise plans. You are both very young to be just getting by. It sounds like it's time to review where you are and what you want. And how you each together and separately, might achieve this. Talking openly and kindly is essential.

Do you work outside the home and would you like to? Are their benefits that might allow for you to get help for your wife while you work or do errands? Might having help be good for her too? Maybe having someone different to talk to or take her out to do girlie things, whatever?

Do you have family that might help? I can imagine that might bring opinions that may or may not be wanted? We all know how families like to share their thoughts. But you never know, it might be helpful?

Not having friends means you are super dependent on each other. That can be lovely but very intense. On the other hand, you wouldn't want to be venting to friends about your wife. Neither your wife or friends will thank you. It's too easy for friends to get invested in other peoples problems and take sides. A good carers group or therapist would be more suitable. They would more easily understand a marriage isn't about sides, but it has to include both partners having the space to be themselves and feel fulfilment in their lives.

I don't know if any of this helps. Sometimes just the act of writing down how you feel is enough to shift yourself into figuring your way forward. I wish you both well.