To Love and To Care?

“ I am 42 years old and was injured in a motor vehicle accident four years ago. My injury is at C7 and my wife was trained to be my care giver during my rehabilitation. I find lately that we are having sex less frequently and my wife has told me that she does not mind helping me with my catheter and toilet routine but she does not like sex anymore and that she sees sex just as a chore now. Please help me; we used to have such great sex! ”

What you describe here is, unfortunately, a common occurrence.In the rehab environment it is recommended, with good reason, that the caregiver and lover should not, if at all possible, be the same person.

People have firm views of what they consider ‘normal’ in their relationships. For most adults, pre-injury life is routine, familiar and comfortable. When your lover becomes your caregiver significantly more tasks are added to their daily activities. Pre- and post-injury routines are usually very different. Like many other aspects of life post-injury, changes in views and established routines are undoubtedly necessary in adapting to life after injury.

As time progresses and care giving becomes a chore, or just plain hard work, the lover-caregiver will often find shortcuts, let up on hygiene and postpone, or even skip, catheterization. Below standard care giving becomes a problem to the disabled person who finds it difficult to chastise, reprimand or discipline the lover-caregiver.

I have spoken to many lover-caregivers a few months after their partners were discharged from rehab to hear how they were coping with the added duties. I often hear them wish to sleep through for just one night without having to wake up and give care. Their partner with the disability will usually complain more about pain, lack of money and not being able to do simple tasks anymore. Although the couple is affected by the same injury the problems reported tend to be self-oriented.

Surely then, the key to a healthy post-injury relationship centers on open communication, learning the facts about life post injury, and a willingness to adjust one’s views in many areas?

Work together as a team to maintain equality in the relationship. This equality will help prevent lover-caregivers from becoming resentful of, or overwhelmed by, responsibilities and daily duties. Significant and meaningful contributions must come from both partners towards everyday tasks such as parenting, various household chores and managing the household accounts and money.

The finances of a newly disabled person can seldom accommodate the expense of a caregiver and the spouse or lover often volunteer to be the caregiver. It shows their partner that they care and most want to be seen by others to be taking care of their beloved. Psychologically their participation in the process provides them with a sense of control and satisfies their need to help, but their needs can hinder the disabled person who is trying to become as independent as possible.

Routine procedures such as bowel and bladder emptying should be carried out relatively smoothly and quickly however, when fecal impaction, diarrhea, bladder or urinary tract infection occurs (as it often does, despite proper diet and care) the process can become protracted, messy and smelly. Lover-caregivers start finding it difficult to perform oral stimulation or receive penetration from a penis that is now associated with urine, bladder accidents and catheters and sexual intimacy becomes a chore instead of a pleasant experience.

This seems to be the stage that your wife has reached and you need to take some action to remedy the problem.If your present financial status allows it you should contact the rehabilitation unit where you received your rehabilitation. They will be able to put you in contact with an agency that supplies qualified and trained caregivers.

Couples who enjoyed a private, physical relationship prior to the spinal cord injury often find the constant presence of a third party too intrusive and should consider a dawn to dusk caregiver with the night time caregiving performed by the significant other.

If money is a little tight at the moment, a reliable domestic worker could also be trained to perform the tasks.

If for some reason it is not possible to employ a caregiver you and your wife need to come to an agreement whereby the tasks concerning care giving and the activities around sexual intercourse are kept apart.

When the two of you are feeling in the mood for love, she must be able to see herself as a romantic partner and not as a caregiver.

Keeping the two roles as distinct and separate as possible will help you both to avoid confusing and blurring the roles in your minds.

If possible, allocate a specific room, or area of a room, to intimacy – where no care giving tasks are ever performed.

Ensure that both bladder and bowel have been voided prior to intimacy. Keep towels and cleaning materials handy then, if a bowel or bladder accident does occur, clean up and carry on.

Humour can also play a major role. The main plan is to enjoy your intimacy and not to stress about it.

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