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alwaysangry
Casual Contributor

How can we reconnect?

Hi.

Like most people our story is complicated. We've been together 24 years now...

I realised in 2000 that he had been hugely depressed for some time. He had changed so much over the year or two before that. He went from loving to cook, having projects always on the go in the house and garden and having a sense of humour to having none of those things.
It didn't help that I wasn't well. That's the year that I was finally, after a 10 year search for answers, diagnosed with lupus as well as a number of other serious health issues. I was more than not well. I was in survival mode. I tried to help him as much as I could, but I was drowning too and it didn't matter what I tried to do, he just sat there. Nothing was good, nothing was fun, everything was negative. And he became angry so quickly and so often that it began to feel like his default setting.
The next four years were a nightmare. I loved my job and was a high-flier in all sorts of ways, including the literal as I flew off all over the place for my work. At the same time I couldn't do my half of the housework as I was so very sick, often so tired that when I drove home I'd sit in the car crying with exhaustion because I was so tired and in so much pain that it was impossible to get into the house unless he came out to help me walk in, get undressed and go to bed, and when I talked about it with him he said rather than medropping my hours from full time, he'd take on my housework (later I found that it was a bit of a misunderstanding. In the same situation he'd want to keep working and so he did what he thought I needed. When what I hoped for was his permission to slow down and put down my incredible work load.)
Fast forward. Rather than me looking out for him, he increasingly looked after me as I dropped gradually down from 80 hour weeks to 4 day, 3 day and finally 2 day weeks and finally ended in hospital with a huge lupus flare and was certified totally and permanently disabled by the various experts.

My health continued to fail and although he was at times almost catatonic with depression, he became my carer. I was often drugged literally out of my mind, there are years in there that I barely remember while he did his best to cook, clean and hold down a demanding job. At times he had to shower and dress me, it got that bad. He became even more bad-tempered and always angry and started to become paranoid, imagining that if I had any thoughts about him they were negative. We'd started out so close, us against the world and now we both felt so alone.

Fast forward... against all odds, 15 years or so on, they finally found a drug that would help me. He'd been on anti-depressants himself for a while and I saw a huge improvement but like many he never really believed that he had a problem, was worried about his employer finding out that he was taking them as they drug tested, and took himself off them. The fact that I could tell immediately that he wasn't taking them just fueled his ever present anger. Meanwhile I was beginning to be able to have a bit of a life again, go out with friends at times, cautiously do some exercise (although I hurt myself a lot!)

He was always hovering, trying to protect me after so many years of doing so, and also feeling threatened by my slow recovery as he both needed to be needed and hated it too.

I felt that I was always walking on eggshells. He was irrational and angry at what appeared to me to be nothing, he could start an argument about nothing at all. Plus I was always feeling like I was being told off. "Don't lift that, you'll hurt yourself. Get out the way, you'll only break it. Don't start cooking, I'll just end up having to finish it and I hate that."

He seemed to always be predicting how whatever I'd started would end badly. He said he wanted me to be around him but he had both the TV on loud and read novels on his phone in the evening, got angry if I tried to talk to him but also got angry if I stayed in the bedroom to avoid the noise and arguments. If I came in to watch TV with him (even though I don't enjoy watching it), and sat next to him he would immediately hop up and sit on a single armchair or away from me.

He isn't willing to compromise so we go to movies he thinks he might like and I watch television simply to spend some time with him but he actively dislikes some of my (new) favourite activities like gardening and craft. He is happy for me to explore my growing love for various arts and crafts but just feels that none of it is very valuable, although he says he's happy that I enjoy it. It turns out that I am actually very artistic and good at certain things but he says 'that's nice' in a flat tone and will admit that he sees it as a bit pointless.

He doesn't have any friends now except some that are friends of mine that have come to understand that he has a good heart despite his attitude of being the 'grumpy old man' and Mr Negative, and that he will help them any time he can. He likes to cook and serve them when they come over because it means that they tell him he's wonderful and he doesn't have to socialise which he finds an effort! He does do things like that so well and I tell him how proud I am of him, in what he's achieved in life, I tell him that I'm in awe of how smart he is and how many facts he can retain (although anything personal to our relationship or life goes immediately out of his head!) - I tell him how much I appreciate the meals he cooks and when he does anything at all like mow the lawn when I know he hates to (and won't let me try in case I hurt myself!)

He shows me no affection, he seems not to have any feeling for me but on discussion claims that he loves me and wants our relationship to continue and work better. He works a lot of hours and I feel that I am continuing to be very low on his priority list.

Then we are where we are now. He has a job he does love, even though he could never show or admit to that sort of emotion. (There's no like, love, enthusiasm, enjoyment in his world.) He initially had an 8 month contract and when it came to an end he was offered another year but in another state. He had just agreed to seek anger management and do couples counselling and he tells me he is still willing to do that if I can find a counseller for him that will work with him without his workplace knowing.

I'm living in our home, neither of us can cope with packing up everything and shifting for what is only a year. I have an elderly family member who is needing a lot of support right now too. If he gets a longer contract over there then I will go to join him but in the meanwhile...
Does Carers Australia offer counselling? He needs help in understanding his feelings and how to graduate from being a carer to a husband again after so long.
I need help also in reconnecting with him and how to get past my own anger and feelings of betrayal over what I see as his anger and negativity and unwillingness to put any time into our relationship even though he claims that he wants to see it remain and get better. At the same time I feel so grateful to him for everything he's done for me over the years, so I'm totally conflicted.

I'm sure you're all well aware of the kind of contrasting emotions he's gone through, resenting me for needing his help at the same time as he loved me and wanted to help me, feeling angry that I needed his help so often and snapping and snarling then no doubt feeling guilty for doing so.

To be honest, life has been pretty good since he's been gone. He will be given regular trips home to see me and I kind of dread that happening if we don't both have support and some sort of guidelines or guidance in place on how to move forward and relate to each other. It's been so many years with him sunk in depression and me absent in terms of being ill and not able to be a partner to him, with him shouldering all the domestic needs. I can't take it if we just revert to our usual conflict-ridden relationship.

Any advice on who to talk to and who to get to help us? I do love him, I just can't cope with him any more and my health remains fragile.

Thus ends the novel for tonight...

8 REPLIES 8
Former-Member
Not applicable

Re: How can we reconnect?

Hi @alwaysangry 

Welcome aboard.

It is terrific that you have after so long found some meds that have helped with your condition.

 

There are so many points you have raised in your posts that are so very common to carers both in how your husband is/has reacted and how you are feeling in relation to caring for him.

 

When our loved ones are unwell and their care has been our focus, we can and do give up activities we enjoy as we are so busy going to work, taking care of domestic duties etc.

 

Can I gently suggest that if your husband has not attended any, perhaps a dedicated lupus education session or two might be more helpful at this point than marriage counseling. (The reason I mention this is than when emotions are high, carers often feel that marriage counseling ends up being a complaint session of what they are doing wrong). These education sessions would help him understand the nature of your condition (including what you are now physically capable of) and also can cover both patient and carer self carea d managing the emotional side of things.

 

Carers Australia do offer free phone counseling and this is worthwhille, I have taken advantage of this and  found it to be most helpful. Anger, frustration and resentment are common feelings of carers and learning how to process these is helpful. You might find that as your husband understands your condition better and the need for self care and doing things that help replenish his spirit both on an individual level and together that things will improve.

 

Can I direct you to this discussion thread 8 dimensions of wellness, which might be of help to you.

Re: How can we reconnect?

Thank you, @Former-Member for your suggestions. I agree that a lupus education session may be useful as I know that he has never really understood the condition nor can he really get his head around chronic pain - he has said a few times that he's thought  when I don't complain of being in agony, I must be fine. I try to explain that the fact of the pain is constant, it's just the level that fluctuates.

In terms of marriage counselling, I've been thinking more in terms of us individually seeing someone, with him to focus on understanding the source of his anger and as for me, I need to work through my own emotions as I really want to avoid the scenario of a complaint session - I would like us perhaps in addition to have relationship coaching focusing on positive ways to move forward rather than a focus on past injuries on both sides. He's sacrificed a lot for me. I'm learning the sources of happiness for me and would love him to find some of his own and regain a zest for life.

Thank you so much for taking the time to reply.

Former-Member
Not applicable

Re: How can we reconnect?

@alwaysangry 

Learning to cope in spite of any diagnosis is the key and it is so lovely to hear that you have been able to do that for yourself and I can see why you would want that for your man. I would dearly love my Mr Darcy to find some joy too.

 

There are classic signs of carer stress/ burnout and it may well be that hubby has experienced this and perhaps talking about his difficulties from that angle might be useful. Once he knows these feelings are common he might feel relieved and then be able to work on things.

 

Important for you to bear this in mind too - when someone is depressed and their get up and go has got up and gone ... yikes.  

 

Re: How can we reconnect?

Thanks again, @Former-Member - is there anywhere that you know of that lists the signs of carer burnout? I'd love to be able to show him something like that so that he can see that what he has felt over the years is quite normal. He doesn't talk to anybody and I can't help but feel that it would help him.

You're so right that once someone gets that despondent and depressed, it is very hard for them to regain their get up and go 😞 - hopefully it will happen over time for both our men!

Former-Member
Not applicable

Re: How can we reconnect?

@alwaysangry  I have tagged you in another discussion thread which has info re carer burnout and tips for carer success. Pictures may initially appear as a triangle on your screen, all graphics need to be approved by a moderator but will eventually appear.

Re: How can we reconnect?

Hi @Former-Member where will it be? I can't see it!

Former-Member
Not applicable

Re: How can we reconnect?

@alwaysangry 

Near your login name there is a "notification bell" which should have a red number on it to let you know someone has either tagged or supported a post.  Click on the message that says "Darcy mentioned you in Carer hints and tips to success"

You can also click on this link Carers Hints and tips to Success where at present my post to you is the last one on page 50 (click on this number either at the top above the first post).

Re: How can we reconnect?

@Former-Member thank you!

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