Caregiving is About Relationships

By Suzanne Mintz, National Family Caregivers Association

Some things are obvious, and yet that doesn't mean we know how to deal with them. For instance, we all know that relationships, by definition, are about the interactions between people. Caregiving is a special type of relationship, a relationship in which one person needs care and another is called on to provide it. It is about loss and challenges and finding a new balance. It's about recognizing that although one person's health and ability to function independently was the catalyst for making yours a caregiving family, everyone in the family, including you-the primary caregiver- have been deeply affected as well. A successful caregiving relationship requires that caregiver and receiver recognize that each of you has needs and rights and feelings that have to be considered, honored, and addressed in an equitable way.

I wish my husband Steven and I had understood that back in 1974 when he was diagnosed with multiple sclerosis. It might have saved us a great deal of pain. It might have meant that we would have been spared the agony of two separations-one lasting a full two years. But we didn't. We didn't understand how vitally important it was that we learn to look at the impact of his illness through each other's eyes. We do that now. In fact, it has become the guiding light of our marriage and how we cope with the fact that ours is a caregiving family.

Our problem was that we couldn't communicate-we couldn't get a real dialogue going about our fears, our sadness, our different ways of coping. I'm by nature a talker, a planner. Steven keeps things to himself, and prefers to deal with things as they arise.

Steven is the one with the clinical diagnosis of MS, but we both are living with it. I wanted to be proactive about what might lie ahead. He found an internal control by trying to go along as much as possible as we always had. It was this inability to recognize that we both needed very different things in order to function successfully with the MS in our lives that led to our separations.

What got us back together and has kept us together now for more than a dozen years was the realization that we needed to find a way to satisfy both of our competing grieving and coping styles. What got us back together, and has kept us together is recognizing that although Steven is the one with clinical MS, we-the family Mintz-also has MS, at least in a psychosocial sense, and that Steven's needs must be met, but so must mine. This is the compromise we have worked out for dealing with the changes wrought by Steven's illness and disability. It works for us. Perhaps it will work for you too.

Since Steven is the one with MS, we first deal with things from his perspective. We acknowledge that things are changing, but we don't take any action because of it, and I agree not to nag him about it. There is no set timetable for maintaining this approach. It could go on for a few weeks or many months, depending upon whether or not our daily lives are being affected and whether or not my stress level is staying under control.

When it, and my fear, become unbearable, I call "time out." "We can't go on this way," I say. "I'm asking that we switch gears and look at the situation from my perspective." Then we have a discussion and find a mutually acceptable approach to dealing with the circumstance before us.

For example, when Steven was losing his ability to climb stairs, I at first watched his struggle silently, seeing the sweat build up on his brow as he slowly and agonizingly made his way up the 14 steps between the garage and the main part of the house. My heart was in my mouth, thinking, "He's going to fall and break his neck, and I can't do anything about it," but for the most part I watched quietly.

When, after several months, the process continued to get more and more difficult for him and I couldn't watch any longer, we began to explore options for making the house more accessible. We decided to install a stair climber, and that worked well for many years, but eventually Steven's level of disability increased and it was time for us to go through "our process" again. We recognized it as such, admitted we were in a transition, and played by the rules. Eventually we reworked the front yard and created an accessible path to the front door and came to accept yet another level of disability in our lives.

The reason I can live with "our process," the reason I am now able to let go, to quietly allow Steven to deal with the changing circumstances of his disability in his own way, biting my tongue, not pressing my point, is that I have come to understand that he needs time to deal with his own private hell, with the changes in his body, with decisions brought about not in the normal course of life, but because of the MS. I have come to recognize that Steven is a "quiet fighter" and that for him, accepting the change means accepting that there is no turning back to a higher level of functioning. Acknowledging to himself that he needs more help is an acceptance that the MS is taking its toll. It is not an easy thing to do and it needs to be done, not in resignation, but consciously and with dignity, and in his own way.

The reason he can say, "I've done it my way. It's now time to move on," is because he has learned to see his MS from my perspective, to understand that I too have rights when it comes to how we deal with the disability in our lives, and that indeed, for our relationship to work and to grow, we both need to give a little in order to gain a lot.

We both learned our lessons the hard way, but that is all in the past. We are stronger for the pain, and our relationship is now constructed on solid ground. "Our process" is based on love and respect and honoring the fact that Steven's illness is our illness, that we are both affected by it, but need to deal with it along a different time continuum. It recognizes that in a relationship, a good relationship, all parties count.


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