Ours is a wonderful love story that shows how two lives came together in unconditional love giving 43 years of support to one another. I truly believe that is the reason either of us survived the last 10 years of endless small good-byes; the journey of a degenerative disease that had no way to end except in death. That is obviously a very difficult lesson and no one wants to learn it!
Some days this might have been either one of our mantras...
Some days were tiny windows of joy, reminders. We tried to have adventures each week, not what we did 20 years ago, but adventures manageable in a wheelchair. We tried to have them in the open air, letting sunshine, beauty and fresh air pump life into our souls. All that fresh goodness energized both of us, lifting our moods and likely improving our immune systems.
They always tell the caregiver to 'take care of yourself' and of course that is a lovely goal, but one I found a bit too ambitious. There was tremendous emotional toll in watching Russ fade away. There is no formula of how to be a patient with Parkinson's disease or how to be a caregiver for someone you love. For Russ and me it was verbalizing that swallowed up our out-of-sort feelings and allowed joy and gratitude to blossom. Sometimes that was hard work and we would have to make a concerted effort to engage with one another...to talk about our day. Life wouldn't wait for our pain to subside, it nudged us each and every day to get up, show up and be present even when we didn't want to or didn't have the energy to face the day.
Watching Russ disappear, one steadfast thing appeared to me again and again and even as he slipped away, an unwavering truth followed me around, love never dies. Even as our days changed minute by minute with uncertainty and confusion, even as our feelings tumbled about uncontrollably, we both felt the consistency of love. What a gift!
I love this quote by Jamie Anderson: “Grief, I have learned is really just love. It’s all the love that you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in the hollow part of your chest. Grief is just love with no place to go.” And so it is with anticipatory grief as well.
What does this all mean? It means we had to shift our energy from hope of recovery to hope for a meaningful and comfortable time together. We did that well following Russ' lead as he orchestrated a beautiful swan song, his final gesture & effort as life's final performance unfolded.