Defining boundaries
Open Door - Winter 2001 page 7
By Lynda Hind, MS specialist nurse, Holt, Norfolk
Having a partner with multiple sclerosis can often be a difficult role for a husband or wife. Your decision to become involved in personal care should not be taken lightly. You must feel free to talk, not only to your partner but also to any health worker that is involved in the management of your partner's MS. It is important that decisions involving personal care are made before the care is needed and a crisis arises. In this way you can both be prepared to say 'no' if this is what you want.
It is important to remember that once the line between partner and carer has been crossed, it is very difficult, sometimes impossible, to return. Once a partner has become involved in personal care, it is usually expected this will continue.
Some people may feel that they are letting their partner down if they do not appear happy to become involved in their care and they might give the impression that they do not love them.
Similarly, health professionals often assume that a husband or wife is willing to assist their partner and this assumption may make it difficult to refuse. There are a number of reasons for this. Some people feel that they are being judged by health workers on how much they love their partner by how much they are prepared to do for them. They may feel that they will be perceived as being a bad husband or wife if they are not willing to be involved in certain tasks.
Another reason is that people may feel that, if it is assumed that they will become involved in personal care, it is obviously the 'norm' and something that other people do automatically. They therefore may not want to appear difficult or awkward so go along with the health professionals involved as it seems to be expected of them.
Sometimes partners will become carers without realising that this transition has taken place. This is often the result of a crisis that has required some medical intervention from an outside agency. They may be asked to participate in certain tasks centred around personal care with which they would rather not be involved. Financial restrictions often force people into taking on care responsibilities which, again, they would rather not.
And it isn't always easy to say 'no'. This is why it is important that decisions are made before they are necessary, so that alternatives can be discussed and people know how to access services quickly should they be needed. A partner's views need to be known and health workers should do everything possible to adhere to them.
Another thing to remember is that the person with MS themselves may not actually want their partner assisting in their personal care but similarly they do not want to hurt feelings or appear ungrateful by voicing this opinion.
Of course, some people are more than happy to be involved in their partner's care and this is fine - as long as this is what both want and feel comfortable with. Also, if ever you feel this is no longer the right thing to do, you need to be able to change your mind.
You may find that health professionals do not address the issues surrounding sex and sexuality. It is a difficult change of role from partner to carer to lover. You may find it almost impossible and many people will regret they ever became involved in personal care issues because of this very reason.
Again this is why your involvement in personal care must not be taken lightly. With a condition such as MS it is easy to feel out of control of things at times. Ensure that you have plans made, should the need arise, and that relevant people, particularly your GP, are aware of your - both of your - wishes.
Never feel intimidated by GPs or nurses - they chose their profession, you did not choose the situation you are in. If you do not feel comfortable doing 'nursey' things, say so. There are agencies out there who will advise and assist you. You just need to find out who they are and how to access them before the need arises.
Just because you may not wish to assist your partner in personal care tasks it does not mean that you love them less. Never let anyone imply that this might be the case.
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