New Member - Just need a bit support

Never posted on this forum before, but I have often read some of the posts. It is reassuring to read that there are a lot of people out there in a similar situation. My wife has a degenerative condition that means that in an average month she is in bed for over half of it. It’s been a slow process, but she has become increasingly worse over the last 12 years which has meant that her reliance on me has slowly increased to a point where now I am finding it difficult to cope.

I do pretty much everything domestic wise, as well as caring for her when needed. I am fortunate that I get a little help with various household chores but as I have a really busy stressful job this only just about keeps things ticking over. Caring wise can be anything from helping her to dress and wash to just serving her meals in bed three times a day. Our relationship is starting to suffer and intimacy in particular is really low on the list. Whilst I am trying my best to cope its very difficult sometimes. I am 37, fit and healthy. I am very lucky that I have a great job and I feel like I am in the prime of my life, so in many ways I am really grateful, but I am finding it hard not to become increasingly resentful which I don’t want to be.

When my wife is having a good day her first instinct is to spend time with friends, which I can’t knock her for. I am a pretty selfless person so I support her need to try and maintain her identity as an individual, but I can’t remember the last time that she had a good day and said “hey I am feeling good today shall we do something together?”. It makes me feel like I am taken for granted. I try to maintain a few hobbies but regularly have to change my plans at the last minute because she is unwell.

Regarding the physical side of our relationship, I am sensible enough to know that intimacy isn’t the be all and end all. I am not going to jeopardise my relationship or the happiness of my children by foolishly caving in to desires, but I literally have no one I can talk to about how I feel. I can’t talk to my wife, as this will simply upset her with no positive outcome. I don’t feel I can talk to family as we just aren’t very close. As for friends I try to keep conversations very much away from anything to do with my wife as I feel it is important for me to have an identity that isn’t just defined by my status as a carer.

The thing that has also been really worrying me recently is the future. My wife gets worse year on year. I am concerned that at the current rate I will be forced to abandon my career to look after her. There are things I desperately want to do with my life, I want to travel develop some of my hobbies and passions. At the minute it feels like the future I could have is being taken away from me and whilst I am not a selfish person at all, I only have one life and I have been the bread winner and main carer since I was 25.

Christmas has been a low point, which I suppose has spurred me into writing this post. I had no time away from work over the festive period, but still did all of the shopping, wrapping, cleaning, cooking. I did the pots 3 times on Christmas day. It seems like a trivial thing to say when I write it down especially when I think of some of the problems people on this forum are having, but its just built up over so many years that I am struggling.

I suppose I just wanted to reach out to see how other people cope with similar issues and to learn a bit more about what support is out there? Are there face to face groups and things like that? I would be nice to hear from some of you.

Hi James … welcome to an extremely quiet forum.

" There are 8 million family / kinship carers with stories to tell … this is one of them. "

( Paraphrasing the opening bit from an old American tv drama series. )

One observation before delving a little deeper :

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My wife has a degenerative condition that means that in an average month she is in bed for over half of it. It’s been a slow process, but she has become increasingly worse over the last 12 years which has meant that her reliance on me has slowly increased to a point where now I am finding it difficult to cope.

In the absence of knowing her condition , is CHC / NHS Continuing Healthcare a potential factor here ?
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

If so … applied for and granted …could well be the answer to many problems … and also liberate you , to an extent , from caring.

( If not , and your wife’s health continues to be poor , the pressure on balancing work with caring will increase. Little can be done there WITHOUT an increase in outside support.
Trouble there is , there may be a cost factor which makes a mockery of trying to achieve that balance ! )

Outside support mentioned … I assume both a Needs and a Carer Assessment upto date ?

Benefits / housing / wills / power of attorney … need anything there ?

Others will be along to extend their welcomes.

Thanks Chris. I will have a read through that link later. She gets PIP at the minute, but I last time I check we didn’t qualify for anything else because of my job.

Your welcome.

Feel free to bounce anything off us here on the forum.

If we cannot provide a direct answer , we’ll probably know someone who can.

James, you can’t go on like this. If you are working then someone else needs to do the domestic stuff.
Start by taking a long hard look at everything you are doing.
What can be dumped entirely? Gardening for a start. Ditch the borders and get someone in to mow the lawn. Yes, I know borders and shrubs are pretty, but they are job creation schemes.
Get a dishwasher, so you don’t have to spend time at the sink. Your kids should be able to load and unload it. My son thought it was a privilege to be allowed to do ours when it came into the house, and my 7 year old grandson is quite happy dealing with it for me now.
A “cleaner” should be able to load and unload a washer dryer, or gain, the kids.
It takes a while to look at everything and work out what to do differently, but it’s well worth doing.
I have had a number of operations and health problems, I was forced to do things differently, it worked so well I just wish I’d done it years ago!

Thanks Bowlingbun, that’s really good advice. I am pretty hot on sorting stuff like that out for the most part. Got a cleaner, gardener, ironing fairy… I think what I am struggling with more than anything is the dynamic in our relationship and the emotional side. It doesn’t feel like a partnership so much anymore, I just feel a but subservient I suppose! I also try really hard to keep smiling.

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I think what I am struggling with more than anything is the dynamic in our relationship and the emotional side. It doesn’t feel like a partnership so much anymore, I just feel a but subservient I suppose! >

In our world , CarerLand , the main relationship is that of carer / caree.

Any other relationship comes a poor second.

It is the price far too many of us have to pay.

Maybe the idea that you should “keep smiling” is part of the problem?
My husband and I were very close, and always talked about everything together. After he died I had no one to share things with, until I had a counsellor, someone who was focussed on me, not my disabled mum, or my son with LD. I went regularly when there were incredible problems, now I just go and see her as and when I need to. It’s part of my “self care” policy - but that’s obviously easier now mum has died and my son lives away from home most of the time.

As you have children, do you ever go away together, with or without their mum? Are they members of a “Young Carers” group?

You make a really good point! I think I would benefit from having someone to talk to like that.

I have two boys and I take them away when I can. I feel really bad because we have so much fun without their Mum and can do a lot more adventurous things. My relationship with the boys is very good. They are the most important thing, so I don’t want the to think that their Dad is sad. Probably the main reason I keep smiling!