Being Andy’s caregiver requires me to be willing to look for answers to questions that the best minds in science and medicine don’t know how to resolve.
This is extremely humbling.
It also forces me into recognizing the real work I do and the depth of creativity and the power of certainty I must tap into. I am the lead research and development scientist in an ongoing study of one person. I also happen to love that person with all my heart.
Unlike real scientists, who garner their power from education, lab results, and a body of knowledge to build upon, my power comes only from fifty years of loving this one man who has lived with Parkinson’s disease for nineteen of those years.
This sounds romantic but it doesn’t manifest that way. Our love has had to rearrange and become nitty gritty, resolved and full of perseverance. A lot of transformation has happened for our love to include new skills and our definition of romance has broadened considerably.
An incurable illness forces this issue but when we were finally able to embrace our new reality, guess what happened?
This is the only answer to all the impossible questions that appear before you in the presence of a suffering loved one. Love is the only thing I’ve found that doesn’t run out and actually grows when there don’t seem to be any answers.
What can be done to help Andy stop choking and aspirating?
Is there any way his voice could return?
When his thinking becomes confused what can I do?
Will I be able to create a life for him that he enjoys?
Can we ever stop his symptoms?
Can I love my own life when it is challenged so often by Andy’s progressing disease?
My Mom is in a similar situation- at age 90- her medicine that keeps her heart failure in check, no longer works and hard questions come up.
Is there any way to relieve the edema-the extreme swelling-that plagues her feet and legs and makes walking or standing painful?
Can we help her breathe more easily?
What can be done to help our Mom?
We run out of answers.
We run out of patience.
We run out of ideas and the capacity to witness suffering.
We run out of kindness and compassion and the ability to be nice.
When we run out of these, we can only turn to love.
I find my love over and over again in stillness. My own meditative breath is the engine that takes me there. Sometimes I also find it in movement-especially moving in nature- and allowing myself to remember I am nature. Often I reclaim my love in prayer as I once again feel the friendship and presence of our creator.
When love returns-even if it starts in a small way- it’s like dipping my toe in the ocean. I am reminded of the vast supply and soon will be fully submerged, taking it in like a sponge filling with water.
When I look for answers and I am floating in more and more love, then the answers that appear are actually useful. This is the beginning of the new wave of treatment that we caregivers must tap into.
Everything becomes infused with the power of love, which makes everything bearable, everything better.