I spent the day of my wife Nancy’s death in the loving and supporting arms of family and friends. Later that evening, I laid my weary head on my pillow and entered a fitful sleep.
Upon waking the next morning, I sat on the edge of my bed and looked out at my backyard. Suddenly there emerged from deep within me a desperate, overwhelming feeling of emptiness. It felt like a huge hole had permeated my being. I called a friend and tearfully said: “I am no longer a caregiver. I’m no longer a husband. Who am I?” To be honest, this feeling caught me totally off guard. I was not ready for it. I was truly lost.
When Nancy was diagnosed with early-onset dementia in January, 2008, there was added to my role of being a husband the new, unexpected and unwanted role of being a spousal caregiver. Over time I came to embrace being Nancy’s care partner, which became my primary focus for the next four and a half years.
Now however, in the wake of Nancy’s death, I had no identity. I was nothing. It was unnerving.
I have come to learn I am not alone in this experience of emptiness and loss. A friend recently emailed me a wonderful article entitled “After the Caregiving Ends”. The author, Judith Graham, recounts the experiences of caregivers in the wake of their loved ones’ deaths. Sharon Vander Waal’s story evoked a strong feeling of empathy.
Sharon’s husband Wayne had been suffering from a neurological disease that closely mimicked Parkinson’s’, but progressed more rapidly. She spent four-and-a-half years as his caregiver, which she describes as having been “a scary and overwhelming process.” Upon Wayne’s death, Sharon experienced relief mixed with the grief at the loss of her husband. What she didn’t expect was the sadness and regret over what had happened. Her dominant focus and feeling had been to be strong for her husband. Now, she felt vulnerability for herself, which before her husband’s death had been off limits.
What struck home for me is what happened next. Sharon said she became very reflective: “Where was my place in the world? I was no longer a caregiver; I was no longer a wife.” Notice the order of things here. First, she felt the keen loss of what had become her primary role – that of Wayne’s care partner. And yes, she was also no longer his wife.
That is exactly what I felt the morning of July 5, 2012, the day after Nancy died. I didn’t know it then, but this was to be the first day of what has been a roller coaster of feelings and experiences.
I have been patient in moving through my grief, not around it. I have welcomed what I would describe as my “period in the desert”, reflecting on who I am and what I’m meant to be.
Over the last nine plus months, this transitional journey has grown in clarity and meaning. It has been transformative. What has emerged is the awareness I want to support and assist care partners of those with dementia by sharing my personal experiences and insights. What is evolving as a personal and professional shift began with the creation of this blog. I have since begun providing workshops for dispute resolution and legal professionals in which I explore how to empower dementia care partners to be truly present to and engaged with their loved ones. In the fall I will co-lead a workshop dedicated to supporting caregivers in their efforts at self-care.
For Sharon Vander Waal, she stated that the emptiness she felt at the loss of her caregiving and spousal roles made her realize she missed helping others. She now volunteers at a local respite program for adults with mild and moderate dementia.
“After the Caregiving Ends” concludes with the story of Darren Walsh and his journey of one-and-a-half years caring for his elderly father through a series of health issues. Ironically, Darren’s caregiving role emerged just a few days after he had left a job at a global consulting firm. He saw this event as having an “element of fate”, as it enabled him to focus exclusively on his father’s care.
After his father’s death, Darren stated:
“I don’t think there’s any way to go through the caregiving experience without coming out on the other side a different person.”
“I never wanted my father to feel he was going through any of this alone, and there will never be a day when I’ll say I should have been doing something else. While the memories are sometimes painful, most of all they’re rewarding.”