If you are a carer for your dh/dp

[Memoo]

Do you feel trapped and would you leave if you could?

I'm not wishing to offend anyone just really need to know.

My dh is my cater and he says no

I think that no matter how much you love someone you are bound to feel trapped from time to time, so I don't find this offensive at all.

I was housebound with DD when she was tiny because she had some serious medical issues, and there were times when I really resented not being able to spontaneously go out for the day and do something else. So I understand how you feel.

I cared for my DH before he died (and I knew he was terminal) and there were still times when I felt trapped. I always had to get someone to sit with thim if I wanted to do a quick shop. I knew my life as I had known it was completely over as he was immobile, needed turning every 2 hours, had to be hoisted into a wheelchair etc. So no more sauntering hand-in-hand to the local pub, no more jolly jaunts in the car to a beach or park. Most days I was still so happy to have him around; but definitely there were times when I was tired and felt total despair for myself.

I am on the other side....my ex Oh has looked after me to some extent when I have been very ill. It restricted us, shattered my confidence. Apparently I changed a lot when ill - goodness who would have thought that an incurable and disfiguring disease might have done such a thing! (Heavy sarcasm)

It all came to a head last July when cruelly, I was on a stabilising chemo regime and he decided to leave me. In the little counselling we had, he described feeling trapped.

I have seen my parents act in a caring role - so I know how complex and difficult it can be, how complex, how much an ill person can change. There is much frustration and resentment that can build up.

That said, I would have stayed with my OH and looked after him he had been sick. Some love is deep....but it is a very tough gig. My parents love, difficult as it was, was a source of huge inspiration.

I think it all depends on the strength of the relationship. If it is strong to start with, becoming a carer is going to be very tough indeed but you might be able to manage. If the relationship isn't strong to start with, a serious crisis is going to expand the cracks very quickly and I expect the carer would feel trapped - out of guilt or obligation if nothing else. I remember a young couple I knew that had been going out together for a while. Then she had a serious stroke and required a lot of care. They broke up shortly afterwards and he got a hell of a lot of critcism for doing so. But I don't think they would have stayed together anyway.

Thank you for being so open. You are all very brave.

I wonder how one deals with the guilt they must feel as the person being cared for. Is it perhaps kinder to end the relationship and let the person go? How do get over feeling like they might only be staying with you out of a sense of duty or obligation?

Sorry, so many questions. It's very difficult to get an honest answer from the people in my life.

but maybe staying out of a sense of duty or obligation is not wrong ? depends on the circumstances.

how long the condition will last. it is for ever or short term. does it have defined beginning, middle end.

but - you are not responsible for another's actions or thoughts. so long as they acting of their own free will and not coerced.

should you end a relationship because of what you imagine they thinking?
no - you need to know for sure what they thinking first.

also if the condition is not your fault (and most likely it is not) you should not feel guilty.

if they adults they presumably acting out of choice so you should asusme rather they caring because they want to do so, not for any other reason

What you say makes perfect sense and I agree. Just can't shake this feeling off.
It's unpredictable and lifelong. This is it for the next 50 years. I have never been certain my relationship would last for ever but now it has to.

Also, from the other side of the fence, if you dp is your only carer it must be very difficult because if you end your marriage you lose your carer.

And what If the disabled person needs personal care? Who wants their dp to be cleaning them after they have use the toilet!?

if phsyical disability then there are solutions - to cut down on caring by the dp - eg toilet use and cleaning - get funding for a special closomat toilet -
www.clos-o-mat.com/palma_shower_toilet.html
www.independentliving.co.uk/closomat/closomat.html

use aids and things.

and personal assistants employed to do some of the care stuff, some of the time ? or even all of the time?

Wow, I never knew such things existed!

I'm still frightened though. My life is not heading in the direction it was suppose to.

Memoo

Memoo, I learnt very fast when DH became terminally ill. I found every aid that there was to give his life some dignity. Of course I still had to wipe his bottom, but we deliberately chatted about other things whilst I was doing it.

I also used the carer's grant to buy 2 hours per day (1 hour in the morning and 1 hour in the evening). I insisted on having the same carer that DH really got on with. That carer was our life line! He became part of our life-line. We did DH's bed-bath together and then the carer would give me 40 minutes 'off' to sit in the garden, or have a little stroll on my own. That 40 minutes was also respite for DH who must have been sick of having me in his space!

We also agreed to abolish the word "sorry" from our language.

Memoo, it is a very frightening experience. Fortunately you are not alone, although there will be times when it feels like it. May I say with the utmost sympathy caring for a terminally ill spouse is not the same as caring for a chronically ill spouse. I'm sure of course that all carers in the first category wish their spouse's condition was chronic but it can be very daunting knowing this could be for the rest of your own life too.

Carers UK used to run a really good course for carers which I'd imagine has been cut for funding reasons but I will look and see if I can find any information about it.

What I have felt more than anything since it began is shut off from the rest of the world, from normal couples who can go out and do things, or jump on a train with the kids, or go on holiday without agonising over every difficulty. Like most of us, I know no-one else in RL going through something similar. Everything I do in my life is limited by DH's illness. As ds is getting older, I am not prepared to accept that for him and I feel there may be some understandable hurt coming when I say I am going to take him on holiday without DH, for example, so that we can just do things without it all being about the person in the wheelchair.

I guess it ultimately creates a very unequal relationship. That's an enormous thing to adjust to in its own right, on top of navigating the horrendous world of health and social care, the difficulties you may encounter with your own health as a result of caring for another (so lifting, for example, or depression) and during which it is simply not reasonable to expect the other person always to be grateful for your efforts. It would actually be cruel to expect it.

Sorry - I think I've painted a very bleak picture above, but I think you wanted unvarnished truth. Keep posting, you aren't alone.