I looked back into my journal from this day last year. My mother had been dead for just over 4 months and I was still thrashing beneath the weight of my grief. At least that’s how I wrote about it then. I used myself up trying to fight it off. I was claustrophobic of my own skin. I’d go to the gym trying to sweat through the pain and I’d wind up collapsed in a heap unable to restrain hysterics. I couldn’t find space for myself. Anywhere. Meanwhile, I was still caring for Dad day in and day out. I was greedy for quiet and isolation. I spent so many days in a stupor while also looking everywhere, and desperately, for signs of her. One morning while Dad was at his day center I dragged a chair out onto our lawn. It was a humid morning and almost immediately sweat was beading along my hairline. Salt and water. This is what I had come to. I felt sticky and itchy. Uncomfortable and restless. A breeze must have come then and on it the memory of her touch. I felt her smoothing my hair back. It was a delicious kind of pain.
We went away to the beach that summer. The entire family for an entire week. I looked for her every day. During a long bike ride down the coast, Casey rolled over some glass and caught a flat. We were 8 miles from home so we called for a ride and waited. He stayed roadside but I walked out onto the beach. For an hour I traced spirals into the sand falling to my knees now and then to unearth some glimmer of her. I saw her in everything.
Later that summer I found solace afresh in a line from Clarissa Pinkola Estes: “This is our meditation practice – calling back the dead and dismembered aspects of ourselves, calling back the dead and dismembered aspects of life itself.” As a caregiver for two parents with dementia, not only did I feel dismembered, I wasn’t sure I could put myself back together in the right order. I couldn’t go back to who I had been. As my friend Joni shared in the wake of her father’s passing: “I will never be the same.” Same. From the root “together with.” I will never be together with her again.
For the first five months after she died, I wasn’t sure whether I was going to make it. Whether I could stay here. My journey with my mother is the greatest love story of my life. I could not believe I would ever again in my existence experience the intimacy and closeness that I felt with her. It was a love we had worked hard for together over the last 7 years of her life. During the Senate Committee on Aging hearing 2 days ago I heard Marcia Gay Harden testify these words: “My mom always told me to repurpose my pain.”
Deep into last summer, I had a similar revelation. It was another sticky day and I was sitting outside again waiting for her to come and brush my hair back from my face. Instead, something else happened.
I was given a plan.
Now nearly a year later, I have been acting on this plan and the changes are about to accelerate. This Monday I begin a part-time job working for the same hospice that will oversee my social work field placement once I begin my full-time MSW program in September. For the next 2 years, I will work toward becoming a hospice social worker.
There is more.
Seven months ago I returned to my massage therapy practice after a decade-long leave of absence. I yearn to make this work accessible and have been inspired by so many others who are helping reshape the infrastructure of care. I reserve two monthly sessions for family caregivers on a free/donation basis and offer the remainder of my sessions on a sliding scale.
We have an incredible team of caregivers helping with Dad, helping to make this possible. One of them reminds me of my mother. She has the same steel blue eyes, a similarly shaped face. Last week at the end of their time together, I saw a familiar rapture in Dad’s eyes. “She has the most wonderful laugh!” He was glowing. “The most wonderful laugh!” If you could have seen the joy on his face. I have seen that joy before. It reminded me of this Rumi line: “When you look for Love, Love is in the look of your eyes.” Momma, inside his eyes. Inside a shell. Inside a butterfly. In another mother’s laugh. Smoothing my hair back. Whispering a plan.
“My journey with my mother is the greatest love story of my life.” Oh, yes!! That is my truth and claim, also. And that whispered plan is so beautiful, so strong and good. I know I would have loved your Momma!
Thanks for letting us share your journey.
Thank you for sharing it with me <3
This is so beautifully rendered; it brought tears to my eyes. You tell your story with so much of yourself. I hope in addition to all the wonderful things you’re doing, you’ll think of bringing this story to life in book form. I have a shelf full of “death” books (as my friends call them) and they bring me so much solace; showing me the extent of grief and pain and a window out of it. Thank you for generously sharing yourself with all of us.
A book is definitely in the plan! Thank you for being here witnessing me and for your encouragement. My “death” books live in stacks on my bedside table and line the floor beside it. They’ve been keeping me company this past year and a half. I would love to hear which are your favorites.
I am living with and helping my dad care for his mom and my mom. I cannot even imagine how you are surviving losing both your parents to this disease from hell. I guess it helps to have such an amazing spouse but I know even so you still feel the loss of friends your age and activities outside immediate self-care and parent-care. You are a goddess, and even though I don’t feel like one I have to remember that so am I. Thank you for reducing the daily loneliness and isolation even a little bit. Hang in there. I am reliably informed by other, former caregivers that there is life after Alzheimer’s.
p.s. Your photo that made me happiest was the one of you and your husband on vacation. Self-care is the only sanity.