When your spouse or partner has a rare disease there is a hidden emotional cost to caregiving. It's the price you pay when illness or disability deprives you of the intimacy you once enjoyed.

 

Caregiving brings unwanted responsibilities. After a while, even the most resilient persons may find that the burdens of caregiving have transformed their closest relationships in ways that leave them feeling frustrated and unhappy. It's normal to feel angry when so much has to change. No wonder that in trying to adjust to a whole new life, intimacy can be lost.

 

Experts agree this loss of intimacy is one of the most difficult aspects of caregiving. Caregivers and care recipients alike need the emotional support that comes from hugging, touching, holding and kissing. Here are a few ways to keep intimacy alive in the face of caregiving challenges:

 

Communicate

Communication is the essential element of any relationship. Talking about loss of intimacy is hard enough in the best of times; when illness or disability is added to the equation it can seem impossible. But talking about your feelings will not only help you remain positive, it will reduce misunderstandings and frustration. Don't assume what your partner needs or wants. Ask. And say what you need and want.

 

Encourage Independence

When caring for your spouse or partner, it is important to encourage your loved one to try to do as many things as possible. Beware any tendency to overprotect or swaddle your loved one. This will harm both of you as well as your relationship. Sharing responsibilities and activities is an essential aspect of intimacy.

 

Be Patient

You are both under great pressure. Let intimacy emerge in small ways. A quick hug, a squeeze on the arm, a reassuring soft kiss may be what is needed to establish a connection.

 

Strive for Balance

As tough as its sounds, you can't let caregiving become all-consuming. Don't let the disease dominate the entire family system. Remember to take breaks and maintain portions of your life outside the home no matter how hard it might be to do so. The only way you can continue to be an effective caregiver is by nurturing yourself. You need to stay healthy yourself to be strong enough to provide care for your loved one.

 

Intimacy requires trust and hard work. It is not automatic and it ebbs and flows over time and with changing circumstances. Caregiving certainly can cause changes in intimacy – and the effort to maintain intimacy can be more strenuous than ever before – but don’t let intimacy be a casualty of caregiving!