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Where is the line between partner and carer? - Carers UK Forum

Where is the line between partner and carer?

Share information, support and advice on all aspects of caring.
Really interesting question which I hope sparks a debate and I would love to know as many opinions on the matter as possible.

I am someone who is disabled and requires daily assistance for mundane tasks such as shopping, cleaning, diy, going out the house etc etc... essentially anything that requires a long lasting effort which I am unable to do myself.

Now if I didn't have my disability my wife and I would I hope reasonably share the responsibility for these things equally and whilst I certainly contribute as much as I can, the burden of completing such tasks often fall on her.

So at what point do you think things become the role of a carer more than a partner?

And just because you do love someone and do care about them, is it right thay society expects you to deal with this as part of the "package" that the person who requires help is?

Does i matter if you knew about these challenges before starting a relationship with them?

Please let me know your thoughts
I am the carer of a man who is also my husband. To start with I would like like to say that I dont think it is a question of either a carer or a partner, it can be both.

I know that many people (especially, it must be said, women) feel that they are not caring for their husbands by cooking cleaning etc - they are just doing normal wifely duties and there are many women who do these duties even though their husbands are quite capable of doing them themselves. The difference between these is, I think a question of whether their spouse/partner is capable of doing these things or whether they need their spouse/partner to do things for them. If anyone is doing things like cooking, shopping, cleaning or anything else that another person is not able to do by themself, then the person who is doing these things is a carer - irrespective of whether they are married/in a relationship or not. It also make no difference if one partner was disabled before the relationship or not.

The next question then becomes; OK, so how much time should you spend doing these things? This is where it becomes tricky. The "official" definition says you need to care for someone for 35 hours a week, but this is very arbitrary and many people spend a lot longer.

I am not quite sure what you mean by "society expecting you to deal with the package" Are you talking about benefits, or the attitude of people around you?
In our case its the line between parent of an adult son and carers.

Eun
Eun wrote:In our case its the line between parent of an adult son and carers.

Eun
Yes eun - I agree.
I think, actually, its the same for most carer/caree relationships - even friend carer/carer.
BTW, by carer I mean care giver rather than care worker, which is what I had assumed that Robert meant, although now I am wondering whether he has confused the two :huh:
crocus you say it so well....
I am wife first and OH carer second but I have accepted the fact that in the future I will be more of the carer role. I always refer to myself as his wife, but when it comes to officialdom, I say carer.
I understand what Robert is saying that a partner is naturally expected to take on caring roles.
I'm a carer for my son, willingly and for my mother, reluctantly.

I take the view that I chose to have my son and so I took on board anything and everything that came with that choice, including his illness. In his case caring involves standing back where possible so he can be independent but being there as a safety net if needed.

I didn't choose my mother. We've had a reasonable though not great relationship but because she has been supportive of me I feel I should care about her even if I'm not the one caring for her.

There is a good though lengthy article on the duty to care for a parent here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3015170/

In the case of a partner-carer it could be said that partners choose one another and may even commit through marriage vows to take on whatever happens. The expectation - that if either partner becomes disabled in the future they will be cared for by the other - actually strengthens the relationship they have while both are still well.

I don't set any store by the expectations of 'society'. I'm sure tabloid journalists, tory politicians and uninvolved family members would love to dump their expectations on carers. Members of CarersUK are hopefully more forgiving!
Crocus thanks for your replies and yes I do mean care giver rather than care worker.

So our marriage vows said "for better or worse", but when worse becomes a challenge too far, or too much of a burden, is there an unfair expectation that as a wife or husband you are expected to do whatever it takes? If I wasn't married or in a relationship then there would be more support for me outside of my personal life. Hence my questions. I feel like I am becoming a burden to my wife who has every intention to love me the best way she can, but is struggling to deal with the challenges of my health. Can I trust she will do all that it takes, for better for worse as we said, or is it not fair to expect that and to think of her more as a carer whose needs are now more specific than just my wife?
Hi Robert.
You sound just like every other vulnerable man whose health is failing. My words are not meant to be harsh but may seem so. As men we feel it is our duty to be the "hunter, Gatherer". When this is removed from us and we place both Reliance and Burden upon those we love and vowed to protect, it comes as a shock when the roles become reversed and they protect and care for us. Self control becomes lost and we watch with self loathing the burden that has been placed upon others, frustration and anger come to the fore and we hate ourselves for that very reason. From the moment you said I DO you both became carers for each other (let us not debate the issue, I have 2 ex wives) as the song says (EAGLES) love will keep us alive. Just say thank you once in a while, that it is appreciated how you are cared for. Anger at ones own situation often causes resentment. Rise above and lift the weight of guilt from yourself. Love will keep you alive.
Thank you for the additional information Robert :)
Robert_15042 wrote: is there an unfair expectation that as a wife or husband you are expected to do whatever it takes?
I fear that you are right there. If there is family around then everyone - society, other family members, social services and also our carees and even we ourselves think that we should do everything. I have been through carer breakdown because I was trying to work, look after 2 small children, sort out the finances and care for a man with a traumatic brain injury. He was only partially aware of his own limitations and expected me to be able to do everything, the childrens school complained that I was not doing enough to support the children, work complained that I wasnt being productive enough and I felt guilty because I couldnt hold it all together and pushed myself too hard.

The answer is that your wife must look after herself as well as you and get extra support when she needs it. Fortunately you are aware of the problem and you can give huge emotional support which will be of great benefit.
Robert_15042 wrote:If I wasn't married or in a relationship then there would be more support for me outside of my personal life.
Is it not possible to access any of this support now? Did it involve care workers coming in? If so, then I can see no reason why this should not continue. Although I could understand it if your wife doesnt want people in, she needs to remember that she needs help to care.

I think that you and your wife need to sit down and have a long talk about the practicalities of life. Think about ways that would make your lives easier. Get a cleaner in to help with housework? Do you require help with bathing or dressing? Does she need a bit of "time out" to relax? Talk about specific things that she is struggling with and try and find a way round them. You could find out what social services could offer by requesting a needs assessment for you and a separate carers assessment for her.

I hope you manage to resolve this as you and your wife obviously love each other. My husband and I have been married for 33years now and I have been his carer for over 20 of them, but it is not always easy.
We have a sign up in our house that reads "love makes things possible, not easy" and I think it's the truest saying around!

We have talked about cleaners, she has very high standards though but finally seem to have convinced her that there is a bigger picture!

we have had social services meet with us but because I am relatively independent other than for fluctuating bad days when I am bed bound they are not interested. But my independence is extremely limited. I can't walk far, have little strength and energy, don't drive and if I cook tea then that saps my energy so I can't do something else. That then burdens my wife to do everything else.

What has been hard to hear is her desire to have respite time from me. She still goes out with friends and family anytime she wants a d if she wasn't doing that then I could perhaps understand a little more. But from the disabled persons perspective someone wanting time away from you, almost selfishly I guess, makes me feel even more guilty for the implications my illness has on her