When we were interviewing couples living with illness for our book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness), one phrase we heard over and over about the impact of illness on the couple relationship was:
Pre-illness, each partner does have roles he/she plays in the relationship. One person may deal with the financial while the other deals with the emotional. One person may be the planner, while the other is the spontaneous do-er. And of course these roles are not immutable. They are preferences, and either person can most likely undertake any role - but each person has his/her comfort zone.
Illness disrupts the established order of routines and roles. The ill parter may not be able to buy the groceries, keep the household budget, or even keep working. The well, caregiving partner takes on not only these extra chores, but may also need to help the ill partner manage the physical and emotional impact of illness. The well partner may need to help the ill partner dress, bathe, get to doctors' appointments, while also boosting the ill partner's hope and holding the ill partner when he/she despairs. And while taking all this on, the well partner is also coping with his/her own overload of exhaustion and anxiety.
So how can a couple whose equilibrium has been overthrown by illness and replaced by an imbalance of dependency still be a partnership of equals?
Here are some suggestions:
- The ill partner should try to stay as close to "normal" as possible. Do what you can do, while taking care of yourself so you don't overload and wind up paying for the exertion.
- The well, caregiving partner, as hard as it may be for some, needs to ask for help. That help can be in the form of having friends/family/others pitch in to do chores like laundry, meal preparation, chauffeuring. Helpers can also carry some of the emotional load - yours and the ill partner's - by sitting and listening.
- While the ill partner may not be able to do activities, she/he can try to be emotionally present and supportive to the caregiving partner. Often being is more important than doing.
- The well, caregiving partner should not get so caught up in doing that he/she neglects the being part. If both partners can be emotionally present for each, other loads will feel lighter.
The illness can foster a relationship between partners that is one of an overfunctioning well partner taking care of a dependent ill partner. If the partners can find that emotional connection that binds them, they can each do their part to sustain it, as equals. This is one way of restoring the balance illness upsets.
Of course, not all partners can find that emotional connection. It may never have been strong enough or may have weakened over the years and turned to animosity. Ot the long haul of chronic illness may have eroded it. What can partners in this situation do?
One approach may be to try to rekindle that emotional bond. Some couples find that illness has the power to slice through the resentments and the noise and help the them focus on the essential - the love they shared and the compassion they can still feel for each other. Working with a therapist can help.
Others who don't find love when they search their bedrock may need to buoy themselves with the love and support of friends and family. Filled with this support, the partners may be able approach each other with kindness, if not love.
How have you been able to be both partner and caregiver/patient? Have you found a way to hold onto a relationship with you partner that is balanced, or has illness made that too difficult? I'm interested in your experiences.