spouses with health issues

[thirdfromleft]

Hi, this may not be interesting for most people but I have been struggling with my situation and wondering if anyone else is in the same boat.

Married to a wonderful person, we have 3 toddlers (they showed up in a hurry!). Unfortunately, even though we are fairly young, DP has had a serious condition diagnosed since we started having kids. She has had low mobility for long periods of time and has had a number of surgeries. the last one seemed to go well at first but then her condition worsened and she has struggled to recover. All in all it means that I take a front-seat role with the kids, and it has started to show. They love her dearly but will often turn to me if they need help or comfort. I try to encourage them to interact as much as possible with their mum but it is really hard. She finds it hard to take, and often expresses frustration over her limits. I have tried everything I can think of to reassure her and it doesn't seem to help. On my side I feel like all my days are taken up caring for the kids, so I have little time or energy for her. Especially because I also have to do all the night shifts, and the kids have not been such good sleepers for the last year. Plus all the hours I spend at work. I love her utterly but I can feel her frustration rising, and I feel like I'm not giving enough attention to anyone.

Anyone else been through this? Any tips on making it work?

I'm afraid I don't have any big answers, but you have my utmost sympathy. I have a serious chronic illness and it has taken a significant toll on my relationship.

So some little suggestions:

• Don't stop talking, be honest with each other regarding your frustrations and how you feel. Silence builds a gap and resentment which is hard to bridge.
• Get as much help as you possibly can - wherever you can get it from. Don't worry about imposing on friends and family, they love you, but they may not offer, you need to ask.
• Have time together as a couple and maybe arrange a situation where your DP can spend time with one child at a time - less tiring, and easier to build a relationship one on one.

Good luck.

Thanks LM, I appreciate your sharing. I understand what you say about communication, but to be honest recently I have started to feel frustrated with her, but I haven't wanted to share my feelings since she has so much else to deal with and I guess I'm trying to protect her. The docs were not totally sure she would make it through the last op. Am I wrong to think that she deserves a break and I shouldn't be loading her with my feelings?

I like the idea of spending time with the kids one on one, will give that a try.

She will find it hard to hear, and you need to be carefully how you do it - maybe a love letter is the way to go? But for your relationship to survive she still needs to find a way to do whatever she can to meet your needs. That's what maintains intimacy along with honesty.

It's worth going into it saying that this is something that has happened to both of you - this is your problem, and you're fighting it together. I'm a big fan of a writer called Rabbi Schmuley Boteach (I'm not jewish, just think he's fab). In one of his books he recalls coming across an older couple he knew late at night in A&E. The wife looked in pain and the Rabbi asked what was wrong, the husband answered 'our foot hurts'. Not 'her foot hurts', or 'this bloody women has us in A&E again' but 'our foot hurts'. It was a pain felt jointly.

By keeping quiet about your feelings about her illness and the impact it has on your lives you will separate yourself from her and she may feel that she needs to hide away her emotions too. I can imagine you have lost a lot of your old life together and the ways you used to support each other, and she will be limited in what she can do but I'm sure there are still ways she can care for you so it is not just one way. Find out how you both need to receive love (check out the Love Languages website) and find innovative ways for you to love each other. That should help the frustration.

Also try and get a bit of space and time to yourself. Even if it is just locking yourself in the bathroom and having a long shower or bath. Get time off from your caring responsibilities to recharge your batteries whenever you possible can. Can the kids pile into bed with Mum and be read a story while you go for a walk?

If your frustrations are such that she may perceive them as being critical of her, I would suggest that you find an impartial ear such as a counsellor similar to offload them.

Wow - because of the situation I am in at the moment, this made me cry. My OH has left in part because of my health (I have lymphoma). I know it is tough, but you sound like a wonderful person and yes, you have been given some good solid advice here. A counsellor really might help - my OH built up a lot of resentment, rather than communicating and being honest. Don't make that mistake.

Have you got anyone around you that could help or give some respite?

LM, thank you so much for your posts. I can't tell you how good it feels to finally talk about this. The Friends and family I have tried to talk to up to now are well meaning but get all pitying over how bad it is, so I end up reassuring them!

I will check out the website you mention, also that author sounds really interesting. Though not much reading time these days so his book will probably end up just looking pretty on my table!

Punk... Thanks for your message. I take the point about resentment building up. To be honest though I feel a bit ashamed about my feelings. I mean, this is not her fault. What reason do I have to be frustrated? Part of me doesn't want to admit I have these feelings at all, let alone tell her about them. But it is a problem... I caught myself being really happy with the kids yesterday, then realized she wasn't there and I felt so guilty. I just don't know.

Hi punk good to see you again.

third you are definitely not alone, dealing with chronic illness in LTRs is so common and yet there doesn't seem any websites or books that really deal with it. Keep talking on here, that's what it's for!

DH has a chronic long term condition that has severely impacted on our family life, his job prospects and also on mine (had to give up a couple of good roles as they were not compatible with supporting our family situation).

I identify totally with Lady Medea's example. It took me a long time but I finally got it through to DH that is was OUR condition, OUR problem as a family not just his. It was something that happened to us as a family and that we deal with as a family. That's not minimising the physical impact on him but it's acknowledging the impact on the rest of us whilst lifting any sense of blame away from him. As a family we deal with a chronic condition and take responsibly for managing it.

We're many years into this. DH first collapsed just after I returned to work from maternity leave with DD2 - she's 18 now. He doesn't apologise for his condition any more, we deal with it, as much as possible, together. And that includes the girls. They've missed out on a lot but I've never heard them complain.

My mother also spent 12 years caring for my father, who became a paraplegic. They were amazing to watch...it was really really difficult for them, particularly with incontinence which made him feel ashamed and unmanly. But their humour, in the face of such adversity, was astonishing.

whatdoiknow - your family sound remarkable. I am full of admiration.