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Partner or Carer? - Carers UK Forum

Partner or Carer?

Share information, support and advice on all aspects of caring.
This subject is touched on in other posts but I thought that it was worthy of its own discussion, I think that there is a similar discussion waiting to be started about other relationships, caring for a parent for example, or perhaps this one will encompass this.

I can exactly date the time and picture the location when I realised that I was no longer my husband's wife but his carer, it was on 17 October 2002, five and half months into his illness, my mother and I were driving down the road and to her horror I started to cry, I do not normally cry, I had to stop the car. I realised that if I was to go up in a puff of smoke, phut, and someone was to come into my home and take up my role my husband would be barely concerned, our roles, and therefore our relationship, had radically changed, to my husband I had ceased to be a wife and merely a provider of services and although in those early days I hoped that we would once again be a couple the occasions when this happens are rare enough to be memorable.

I have often wondered why the relationship, or our perception of the relationship, shifts in this way, is it because of the demands made on us due to the physical side of caring or a fundamental change in the way in which we relate to each other because of the caring role itself? I think that both contribute to some degree but in my case it is primarily the change in my husband's personality, the way in which he now sees me and the way in which I have had to adapt to this and relate back to him.

I often think that in some ways I am fortunate in having a progressively disabling condition, having to adapt not only physically but also emotionally to the loss of the ability to do things and find alternative ways to do things and interests to fill the gaps in the things which I used to enjoy doing and also having to find emotional coping strategies seems an excellent preparation for caring because I think that in order to survive as carers we have to learn to be infinitely, and often at very short notice, adaptable. There are times when I feel terribly resentful and angry and am filled with an overwhelming sense of loss for the man I once knew and loved, when I want my husband back and the life we had before and the future we saw laid out before us but mainly I live in the moment, do not look back, I have put away all the photographs of our previous life, and do not look forward. And I often think that the sheer repetitive, monotonous drudgery of caring and the exhaustion prevents us thinking and feeling as we would under other circumstances and makes it, in an odd sort of way, easier to cope with this changed role.

I wonder how other people feel about and cope with this, how some have managed to retain the husband/wife relationship and how much this is to do with different caring roles and how much to do with individual personalities. Why do we still love and stay with people with whom the roles and relationship are so changed, I find that I have a fierce and protective love for someone who is, in reality, now a familiar stranger and not the man I married, is it the rare glimpses of that person which keeps the love alive or the memory of the person and relationship we had? And is there some way to change the roles back so that we become partners again and not carer and cared for?

I should say that there are times when I could quite easily slaughter my husband and if he does not get up soon so that he goes to bed before midnight for a change this about to become one Image .
I could have written this. Word for word. I've tried to explain it by saying that I care for the body of the man that I married: he left long ago, and I'm sure would be just as happy (if not happier) being cared for by a kind stranger.
Other people try to portray us as caring and loving saints. This adds to the guilt and depression even more, because inside I'm seething with anger/hurt/depression.
I've spent the last 12 months fighting with his Consultant and our PCT for him to be prescribed a drug which has until only recently been approved by NICE, but is left to the discretion of the PCT as to whether they allow it or not. We heard yesterday that the OH is going to be allowed to have it. It's probably because I've been such a dragon and have already initiated legal proceedings against them.
The question now is - why have I done it? I feel sometimes that I can't cope a moment longer. I'm prolonging the agony and misery and must ask myself why. Is it because I'm one of those people who, if told something can't be done, immediately takes up the battle to prove that it can and indeed that it will.
Thank you for that Parsifal. It helps with the guilt.
I, too, could have written that Parsifal.

To cut a long story short, the only time my husband talks to me now is when he wants something. If I start talking to him about anything he’ll answer “oh yeah…can you just…? Do you think you could….?â€Â
I aggree with Dorothy, in that I still love my husband but not like a wife. Sometimes he wants a hug but I just don't feel like it when I've just spent hours trying to do the ironing while he calls me every five minutes wanting a glass of water, cup of tea, somethhing to eat, his catheter emptied or his pillows straightened ect, ect. Its the same when I'm trying to relax by watching tv or reading I'm constantly having to stop to do things for him. I feel no time is truely mine, and certainly don't feel like giving him a hug, more like strangling him!!!
Hi Annie,

I can relate to your post, although mine is a child/parent mix - me the child, caring for Mum the parent !

All through our growing up we looked to our parents for guidance and support; they fed us, clothed us, taught us right from wrong and were always there to pick up the pieces when something went wrong - a failed relationship perhaps or a job we hated but were afraid to leave in case we didn't get another. They wiped our runny noses and cleaned our mucky bums and now it all seems so wrong that we are having to do the same for them.

My Mum and I were always best friends rather than Mother/daughter; I could tell her anything, bring her any problem and together we could sort it out. Now it is so different - I can't hold a conversation with her beyond 'what's the weather like today ?' or 'what day is it ?'. Our conversations now are just confirmations of what day it is as she can't retain information long enough to sustain a proper conversation - day after day is spent continually repeating the same simple things. She can't even make choices now - like 'would you like tea or coffee ?', the answer always comes back 'whatever is easiest' or 'whatever you're having'. Any question asked of her has to have a yes/no answer; so now I just ask 'do you want coffee ?' and take away the choice. I can no longer take my problems to her for help in finding a solution; I have to do that all alone now.

Keeping her clean is starting to be a nightmare; she doesn't notice if her clothes are stained and wants to wear the same clothes day after day - again it's easier than choosing an alternative outfit. So I have to surreptiously whisk things away to wash them and put them back when cleaned. Even getting her in the bath is a problem; physically she can't manage on her own because of her arthritis and osteo-porosis; mentally she just doesn't remember that she hasn't had a bath in days. And this is a woman who was so fastidious that she could use up a large can of deodorant in a week in case she smelt of BO.

Like you said Annie, our carees get to a point when they don't see US - their wife, daughter, husband or son - they only see someone who helps them get through the day, someone who makes sure they take their meds, someone who feeds them and keeps them company. They see us as nursemaids/companions and that's about it.

In a way I envy those people who can just walk away from a situation like ours and leave it to outside agencies to take over the care we give - but I wasn't brought up like that. I still love my Mum and would do anything for her, but the woman who was my Mother is no longer here she's been replace by a lookalike - a sad, confused old woman with whom I have nothing in common any more. Like you, we had plans for the future - once I was retired we were going to have lots of holidays and see lots of new places. I was going to take her to all the exotic countries that I had visited when I worked in the travel industry; we were going to go on safari; visit the Great Wall of China; visit Boston in the fall. So many things which we will never now do - it's so sad.

And just as sad, is the fact that I, like so many other Carers, still won't be able to do these things in MY future because by the time my caring role ends I will probably be too old and tired to do them for myself.
I can see so clearly where you are coming from Susie. felt that from the day Dad passed away in 2007 the relationshp with my Mum changed dramatically. Mum spent 18 months with my sister (albeit I returned to the UK for a week each month for respite) and yet when they "fell out" and mum returned to her own home with carers, my sister said that she felt "liberated". As you know, I cared for Mum (1 in 3 weeks in the UK) and even with this amount of contact, plus of course the constant talking on the phone many, many times each day, our relationship also changed dramatically. It almost felt that Mum had little concern for my well being and was quite happy for me to come over, cook, clean, garden and generally ensure that the home was kept up together - whether it was really out of my physical capabilities or not. How does it happen? How do you get to be the person that is just expected to do everything and quite often without even a simple thank you? Then came the resentment that everything was just taken for granted, sometimes I would fly over, get a bus then a taxi eventually turn up on the doorstep and be greeted with "make me a cup of tea" and not even a Hello! This was very closely followed by guilt, particularly as I lived so far away, as Mum always reminded me!

Do I miss it all now Mum has passed away....of course not, I feel like I have part of my life back again to share with Tony (the other part is now with caring for Miss Daisey here), but do I miss Mum? Every day, but probably not the Mum that passed away on the 9th June 2009 but the Mum I had and lost before the crippling, horrible illness took its hold.

My thoughts are genuinely with everyone who is struggling with their lives at the moment, it can be a very dark and lonely place to be and my heart goes out to you all.

If I do have one thought (perhaps a little contraversial) it would be that I believe that being someone´s "carer" doesn´t necessarily mean that you have to be the person physically "giving" the care day in and day out. I personally feel that you can care for someone by ensuring that everything is done to ensure that the caree receives the care and support they need from whatever agency necessary. God knows its not easy, and there were times when I just wanted to "do it all myself" but in the end, after shingles and a near melt down I had to admit that probably other people were quite able and often more qualified than myself.

"God Bless ya Mum....I´ll put the kettle on when I see you next".........Bell xx
As you all know iam a carer for the old doll mother but as the years have gone by it`s more like we are partners .
As you all know iam a carer for the old doll mother but as the years have gone by it`s more like we are partners .
Image Had to laugh George! When we go out I sometimes feel like I am the daughter with Tony and Miss Daisey the parents Image They always order the beer and "a coca cola for the little one"!!!
had to pick up scripts at docs today (i know most of the staff) but the old dolls script was missing the recepitionist said can you come back for your wifes script at 5 it doesn`t bother me but the old doll goes mad she always says do ya think i would marry someone as daft as him .
Hi, I never really though about that side of the coin. Image

We're still very much a couple, thinking about it all, maybe that's because during the daytime when OH is awake things are really very "normal".
Well, apart from the supervision and seizures during the nap times. Image

I think that bit of the day, where we can be just like everyone else, has enabled us to keep up the relationship and do things other couples do.

Don't get me wrong, it's always there in the back ground and he can and does fall asleep and fit if you take your eyes of him for any length of time but on the whole we're doing pretty much ok!
Though I do admit to feeling a bit like nurse nancy during the constant night times where it's seizure city! Image

I guess we're still in love, 25 years on, seizures, caring and all. Image
marie x