However, my thoughts turned in another direction after reading this study. I thought about the "death in life" that some caretakers of partners with long term debilitating illness speak about as their world slowly shrinks to fit within the dimensions of the sick room. Caretakers I have talked to poignantly describe the impact it has when partner turns into patient and caresses get exchanged for sponge baths, lively conversation for medical updates, and future dreams for waking nightmares.
How does the caretaker not only juggle daily practicalities -- shopping, chauffeuring, working, finances, child care -- but also deal with the snarl of conflicting emotions? Cherishing the memory, hating the reality; yearning for release, fearing further deterioration; love and obligation; commitment and escape; loneliness and guilt.
When I was at my worst, housebound with my daily battle with pain, Richard (my partner and caretaker) and I, both exhausted from the struggle to carry on, would sometimes just sit together in silence . There was nothing more we could do and nothing left to be said. In silence, when the words we hurled at our fears ran dry, we could feel a connection, one that survived in a calmer universe where pain had lesser authority. For a moment, my caretaker could suspend his vigilance, and I could feel whole.
One day, following one of these silent respites, we stumbled upon an essential question. We asked, "What is the most important thing we can do for each other?"
Our answers rose to the top of the emotional heap in an instant. I wanted Richard to tell me that he had faith that I would recover. He wanted me to let him know whenever I felt even the slightest relief from the pain.
This was a way to swaddle our terrible fear in love and reassurance, and quiet it, for a while. So much was beyond our control, but this we could do for each other, happily, easily. This was a new beginning for us. It made the load we each carried a little bit lighter.