Hello, does anyone else here care for their other half?

New to Carers Connect
1

Hi,

I joined a couple of years ago and at the time didn’t really post, but I’ve been struggling a lot lately and I guess I’m just trying to find some support. I am a carer for my other half, he has been unwell for a while but just recently got diagnosed with ME (chronic fatigue syndrome). It’s been really bad at the moment and he’s in bed all day.

I do my best to stay positive and get on with things but it’s hard when no-one around us really understands. I’m 29 and most people my age are moving on in life, getting married, buying homes or having children. I love my other half so much, we’ve been together nearly 7 years and I am completely committed to him, but it still feels unfair that we can’t do much. I understand caring for anyone at any age is hard but it feels like I’m missing out on life because his illness has changed everything. If we could just have had another 5 years before he got ill maybe we’d have children, now I don’t know that there’s any hope of that. I feel like I’m grieving for the life we could have had.

Is anyone else here in a similar situation?

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Sort of: I started being a carer just about at the same time that I retired so although we’re at the other end of our lives I know exactly what you mean as I feel that we’re missing out on our retirement and doing all those things that people usually get up to when they retire. Just not really possible now.

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I am an unpaid carer and I have ME and look after my disabled wife, so that’s even more complicated.

I have good days and bad days with ME, sometimes i am alright sometimes i need a lot of rest.

There is support for ME:-

Yon can still have kids, there are thousands of family’s who have one parent who is disabled or ill.

You just need to get the right support.

Have you tried your local unpaid carers organisation, there is normally one nearby if you live in a big town.

Most hospitals these days have a pain clinic/chronic fatigue clinic, sometimes you can self refer or you need a referral from your doctor.
ME is about pacing yourself, realising your limits, no you can’t climb Everest but you can have a fairly normal life.

The clinic will help you and your other half live with ME, how to cope with it as a couple.

There is pacing, think what you can do and halve it , don’t try and do everything, don’t try and be superman, give yourself plenty of time and rest, avoid stress, try relaxation exercise’s.

It can be difficult emotionally looking after someone who is ill, Counselling can be helpful, accessed through the doctors or the carers centre sometimes.

I hope this all helps, I have had ME over 20 years now, it is difficult but manageable, and that’s what you have to do, there is no cure for ME, no one fully understands it, but it can be managed.

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Hello, and thank you for posting this – I’m in this position too. My partner has chronic pain and has had to stop working because the stress of their job had made it so much worse and contributed to their pain and loss of mobility. I relate to your feeling of grieving – I was very lonely before we met and I felt like I’d finally found the missing part of myself, but only a few months after we moved in together they started to suffer more and I felt like the life I’d imagined was taken away. My partner is 29 and I’m 30 – I thought we might get to travel together, things like that. I feel guilty because it’s so much worse for them – they’ve lost more than me, they’ve lost their mobility and independence. Friends are supportive but yeah, most of ours are around the same age as us and they don’t really understand. Solidarity <3

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Thank you for the replies. It does help somehow to know I’m not alone.

alymoon that’s exactly how I feel! I think we just have to remind ourselves that we’re still allowed to be upset by it and find it hard. It is still hard for us, even if we aren’t physically going through the same thing as our other halfs <3

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Hello, I care for my husband. He has a disability called arthrogryposis which for him means hes unable to walk or use his arms or hands so requires support with all daily activities and all personal care. I’m 33 and hes 40, I’ve been caring for him since I was 24. I can completely relate to how your feeling, it can be so isolating and lonely. Those feelings dont mean we dont adore our partners it’s ok to not be ok. I feel like our lives are so far behind our peers we dont work, we dont drive, we dont have kids… hes never found employment, I’m needed here. I tried to learn to drive but kept failing and tbh money is so tight I dont know how we would afford a car even on the mob scheme. We tried for kids never happened for us. I started getting into voluntary work but a lot of the time I’m so tired from being a carer and dealing with my own health issues I struggle. We also moved to a new county for housing reasons and that means no family or friends in the area…I have some people I see maybe every few years but no close friends who I can confide in. It’s tough