Disabled husband driving me mad!!

[Joola]

feel bad moaning but my DH is really annoying me!
8 years ago he was diagnosed with a rare blood cancer. The treatment was pretty gruelling and he lost the use of his kidneys so was on dialysis. During this time I looked after him, slept by his bed in hospital as he didn’t want me to leave him. Washed him, changed him, feed him, you name it I did it!! Unfortunately the treatment that cured him left him with no use of his hands and unable to walk properly. 3 years ago he had a kidney transplant and since then his health has improved. He’s struggled with his mental health, had CBT and counselling. I’ve always been there for him and looked after him, set out his clothes in the morning, prepared his breakfast for when he got out of bed, put his tablets in an organiser so he can get them easily, left his lunch when I went to work. He’s done NOTHING for years.
I’m now getting to the end of my tether as I think he could do more!! He’s stronger now and with another more effort I think he could do lots more but has just become lazy!! He needs to do more exercise but doesn’t unless I instigate it. I got him a personal instructor at our local gym, he hardly goes. He never visits his mother in the nursing home.
He can’t drive, he probably could if he took the trouble to do a disability driving assessment but never thinks to sort it out himself. After years of not being able to do things as he had a strict dialysis routine he still lies in bed till lunch time, I’ve given up telling him to get up. I feel he’s wasting the life of his kidney donor and that makes me extremely sad for the family left behind. I know it’s hard for him, he was a strong, 6 foot builder that everyone relied on. He just doesn’t try. It’s affecting my feelings towards him. I fought so hard to keep him alive, got him the best treatments. I love him but I don’t want to be his carer, I want to do exciting things and live the best life we can. We’re both in our late 50’s. AIBU to want him to try harder?

I am disabled and have very little energy. I have chronic fatigue and been very ill in the past, have had a few major surgeries leaving me even more debilitated. Never been so unwell I couldn’t self care for extended periods. But it is very hard.

It sounds as though he’s checked out of life. I regularly get so exhausted I wish I could die. I understand other people may not have the mental health to go through these feelings. The suggestion to take tricyclic anti d’s is good. Your dh needs to want to help himself though.

I totally think you should go away for a while and leave him to it. You are not a machine. He has hands to buy takeaways if nothing else and I don’t expect things of my dh I can do myself, albeit I know he doesn’t always see it that way. He gets regular time away and has hobbies and interests.

Maybe look at a physio coming to the house to help with exercise and also a psychologist.

@NumberTheory - that is a truly brilliant post. It is so easy to slip into being a carer and not a wife. Or the cared for and not the lover.

I am a wife who is also a full time carer. I am lucky as my DH does tell me how much he loves me, does hold my hand while we watch TV and does his best to help. (His problem is that he is now mentally incapable of helping - he has forgotten so very much of how to do things, and isn't able to re-learn much).

We are happy together. We are each learning hard lessons but we do talk to each other and try and explain our difficulties to each other. That's the huge key to it all - keep talking, talking, talking. Without accusation, without anger, without frustration. It's no-one's fault - but we each have our own problems with his disabilities and they are different. But we need to understand how each of us feels - so talk. A lot. Hold hands while you watch telly (move furniture if you need to), find the good where you can.

Most GP surgeries have a carer's officer attached - they are on your side and can try to help you. They will listen. Join your local carer's association and they have social meetings etc.

But talking is key.

Carer burnout is very much a thing.

It’s easy to get caught in the “I must be the one to do it” cycle. Your husband then gets used to it and services take it for granted that you will.

There is nothing wrong With saying “I can’t do it” and asking for help.

In my career, I have seen this a lot. Carer burn out. In the initial phase of illness, you want to do everything and nurse them back to health. When it becomes a long term thing, it changes the relationship completely. You need to have a Frank discussion with your husband about how you are feeling and that you want to be husband and wife again. Then speak to social services and explain how you both feel. Take the help, take it all! Before I was a nurse, I was a carer for lots of people who had a husband/wife at home and whilst they were still very involved in the care (and would step in for holidays etc.), it kept their relationship, a relationship. They were no longer good cop, bad cop and everything in-between.

You've had some great advice here OP, I hope some of it works for you. With regards to the counselling, the charity Leukaemia Care offers a block of counselling for people affected by blood cancer (patients and their family members), you would both be eligible and they are a brilliant charity, please do contact them, they have helped me and my husband so much. You may also be able to get help from local cancer charities or occupational health if you're working. I do recommend specific cancer counselling as it's such a life changing thing to go through and a therapist who is trained and experienced to unpack the trauma you both experienced will make all the difference.

If you have a carer's centre local to you register with them too, not only will they also be able to offer counselling but they may offer relief help like cleaning or maintenance etc.

Good luck my love.

Before getting him a carer I would look to getting him an OT assessment. You say his health is much improved, it would be useful to know what it is he actually could do if he tried, rather than allowing him to assume that he can’t do anything and to take advantage of the fact you do so much for him. It can be very easy to fall into the thought process of not being able to do things when you don’t have to do them and no-one is putting pressure on you to do them etc.

Also, is it possible that he’s afraid of doing things because of A, not being able to do them, but also because he’s afraid of going back to where he was because he was healthy when all this started?

I have a serious heart condition which left me almost incapable for nearly 3 years. I couldn’t walk from my lounge to my kitchen without becoming breathless. If I cooked I would have to stop halfway through as I became so breathless and dizzy I couldn’t stand in front of the cooker, I couldn’t get the trays out of the oven because bending down made me dizzy. I didn’t leave the house on my own.

After I’d had some intervention, during which time I spent significant amounts of time in ICU, had a cardiac arrest, had to be defibrilated and had CPR and then had surgery to (temporarily) fix some of the damage to my heart valve, a valve I couldn’t have replaced because i would not have survived open surgery, I finally came out of hospital and had to put my life back together. For me I wanted to do it, plus I didn’t have a DH at home to do things for me, so I had to get up and do things, I had to cook, in fact I love cooking and this was likely a good thing because I couldn’t wait to get back into my kitchen. But I did have to then have to go to cardiac rehab for 12 weeks to ensure that I was doing some exercise again, and there we spoke about how a lot of people are afraid to start doing things again because it was when they were healthy that things went wrong so there’s a fear of regressing back to where they were when they were ill.

And for me it happened that I went to the transplant clinic for an initial discussion 6 months after I’d had my surgery, and at that point my bloods were all out of sink, and they told me that I had a year max before my heart regressed back to the point I would need to be assessed to go on the transplant list. And I walked out of there feeling as if I’d just been given a glimpse of a normal life I could have, only for them to say “nope, can’t have that after all.”

I was very lucky. I put in all the lifestyle changes they told me to. I made sure I kept up being active. When we went into lockdown I had to shield and to maintain my steps I walked 10000 steps around my house every day.

In July last year I qualified with my guide dog (I am visually impaired, not because of my condition, I already was,) and I can honestly say that without me putting in the effort I would never have made it through the training because it was bloody hard work.

I still have some difficult days. I still get fatigued sometimes, and last week I had to go to hospital by ambulance because my heart was racing. And when things like that happen I am afraid I’m going Backwards and that I might end up back in those dark times. I am actually more afraid of that than I am of dying.

I am lucky. I am 2 years on from that hospital appointment and I am due to go back to papworth next month, and am hoping that I am still stable. I don’t have any reason to think I’m not.

I know I will regress. My condition is such that it will deteriorate again, and when it does, I know my only chance of a normal life will be a heart transplant. I also know that due to certain other conditions there’s a chance I won’t be eligible when the time comes, in which case I will just have to wait for the inevitable.

But for me the idea of having to have a carer of any kind would be my worst nightmare. So I will do whatever I can to make that never have to happen.

But some people go the other way, and find it hard to going back to doing things for themselves because someone else will do them for them.

Was your DH always helpful around the house etc before he fell ill? Or is this an extension of who he was anyway? Not saying he was useless, but plenty of men do let their wives do a lot of the housework etc already, and if they fall ill their habits of letting her do everything just get worse.

You are not unreasonable to be resentful. And tbh I would tell him that he needs an OT assessment to see what he can do, because you can’t do it all for him any more, and as he’s healthier he no longer needs to be so reliant on people unless he’s told he does.

@WorstXmasEver

Bin him off.

Ffs