For many suffering from painful or debilitating disease, death is the only real relief. For many caregivers, it is the same. Often, worn down by years of attending to the needs of a loved one; years of watching the mental decline from Alzheimer’s disease or other type of dementia; years of watching the frustration and suffering of a once articulate parent struck mute by a stroke, the caregiver also feels relief when the suffering person dies. That doesn’t mean there isn’t grief. But it’s often mixed with relief.
But then what? That is what my good friend asked me after her mother died. Her mother had suffered from Alzheimer’s for 10 years. After she died, we discussed what we do after we grieve. How do we remember the person who was? How do we travel back in time, before the dementia? Before the stroke? How do we rescue those precious moments in time, buried under layers of sickness? The sometimes abusive behavior toward the caregiver, by a once loving person? The sheer exhaustion from years of care-giving?
My dad had surgery to relieve pressure built up behind scar tissue in his brain. Dad, as we knew him, went into surgery. Another man came out. He spent 10 years in psychic hell, a semi-stranger in my dad’s body. Mom’s decline was a slow mental slide. She went into a nursing facility because of falls and severe arthritis, but dementia eventually nestled in her brain.
Like my friend who watched her mother decline into a childlike state, I was left wondering, who do I remember? How can I find those loving childhood memories and bring them out from under all of those years of pain?
It takes willingness. It takes focus. And it takes time. But I chose to begin the effort and I choose to continue making the effort. They deserve no less. My parents didn’t ask to live their last years as they did. Nor did they choose how long the decline and dying process would take. I owe them the chance to be remembered as the smart, loving, funny people they were, before all of that.
God knows I couldn’t forget those years of decline. And I don’t want to. It’s part of their lives and part of mine. But that is not what I want to remember first, when I think of them. I want to remember who they once were.
I am very slowly getting so that, when I see that I have a waiting phone message, I don’t panic, expecting yet another trip to the emergency room. I am slowly putting those last years into perspective. I’m remembering the parents who raised me. The grandparents who played silly games with my boys. I’m remembering, with some effort, the whole of each person, not just fragmented pieces that remained at the end.
My friend and I agreed on this. We agreed that it was very hard, but well worth the effort, for our loved ones, and for ourselves. It does get easier, as time passes. I choose to remember the whole person, to honor the complete life rather than dwell on a slow, often demeaning death. I choose to remember them as they were.