I know it’s the disease; it’s not my mother.
The knowledge doesn’t make me feel better; instead it blurs the shades of green in her eyes between angry and rational moments. All are woven together in a life consumed by dementia and Alzheimer’s. The knowledge rides waves of my guilt as we live life together in the grip of this despicable disease.
Caregivers share their pain in support groups and private message boards. I find comfort in their honesty; it’s knowledge that I’m not alone in how I feel. I’ve honed techniques to protect myself, to armor my soul from her unintentional but irrational and sometimes hurtful behavior. Behavior that manifests only because the disease burrows deep into my mother’s brain.
I know it’s the disease; it’s not my mother.
As a caregiver it’s difficult to let go, to see beyond the self-absorbed grief, to stop wallowing in the perpetual loss. I have a partner in this dance, a fact sometimes blotted out by the loss I feel. Recently I was reminded.
I joined 1300 other passionate people in search of answers for dementia and Alzheimer’s disease in Washington, DC. It was the week after President Donald Trump’s Health Care Bill went down in flames. We were intent on painting Capitol Hill purple to build awareness and support in each and every corner of the city.
It wasn’t on the hill that I had my epiphany; it was in a large remote meeting room where Richard Lui of MSNBC interviewed two people. One was a caregiver who lost her mother after a difficult battle with young-onset Alzheimer’s. The other was Mike Belleville. Mike was diagnosed at the age of 52 with young-onset Alzheimer’s, but in time his diagnosis changed to Lewy bodies. This is the form of Alzheimer’s that took Robin Williams from us – and it’s one of the toughest forms of the disease.
I was far enough from the stage to see him only on the jumbo screen but I felt an immediate, deep and personal connection to Mike and his wife Cheryl.
Here’s a man, younger than me, living with the disease. A man brave enough to share his life with us, unfiltered. Mike talked about the deep depression he suffered at diagnosis and the strength Cheryl gave him. Together they broke through their emotional paralysis to become advocates for those living with the disease and those caring for a loved one.
When the session ended I stood in the hallway waiting for others in my group. Mike and Cheryl walked toward me hand in hand. My usually reserved demeanor went out the window. I walked up to Mike, a fairly robust man and I hugged him hard. Through my sobs I told him how much his talk meant to me. We shed a tear together for our shared burden with Alzheimer’s. We were partners in this dance for just a moment.
The most powerful and moving description of Mike and Cheryl’s advocacy can be found in Elizabeth Warren’s new book, This Fight is Our Fight.
Upon meeting Senator Warren for the first time Mike said, “ Hi Senator. I’m Mike and I have early onset Alzheimer’s disease. Soon I will have forgotten this conversation. I will have forgotten everything. You. My children. My wife. Everything I know will be taken from me. Please, I’m going to forget. So I need you to remember.”
Through my friendship with Mike and Cheryl I’m reminded that each moment in this disease is not like any other. As caregivers and those living with the illness, we must recognize and respect each other’s sensitivities.
Those diagnosed with dementia and Alzheimer’s disease live with a cruel knowledge of how the disease will inevitably rob them of memory, love and life. But diagnosis is not end-stage, there are many days filled with vibrancy and fulfillment according to Mike. Just listen to him talk. Just watch him live life.
We need more Mike Bellevilles who have the courage to commit to advocacy and the strength to rise above a diagnosis. He gives hope to others and equips them with tools to cope with their loss. . Mike and those with the disease who advocate “out loud” are angels who walk among us. Driven by a sense of urgency, their advocacy must be underscored by the ticking of a clock much more resonant than the rest of us are able to hear.
Caregivers stand witness to the ravages of the disease through all the stages and for someone we love deeply, as Cheryl does for Mike. Human nature often drives us to focus on the worst we’ve seen, the most debilitating side of any experience. Caregivers focus there because this disease has stolen something very precious from us and we can’t fight back any other way.
It may be time to change the focus, to ask caregivers to rise beyond their grief in the same way we see Mike rise above his Lewy body diagnosis. I’ll carry my mother’s story forever on my lips and the pain of caring for her forever in my heart.
But caregivers and those diagnosed aren’t two separate camps in the battle with Alzheimer’s disease; instead we are two collaborative forces whose united power can overcome many obstacles and aid so many in their journey.
Thank you Mike and Cheryl, my commitment is evolving.
I’m working hard to be more balanced in my view of this disease, to look past my own grief so others diagnosed will find the strength to become fearless advocates in the face of such a dreaded disease.
I’m working hard to see everyone diagnosed with this disease in a more holistic and vibrant way. I do so out of respect for my friend Mike and the countless others like him facing and moving beyond their diagnosis.
I’m not abandoning my caregiving cohort; I know your pain all too well. I now see by focusing only on my mother’s end-stage, I’m not effective in supporting others who currently walk the diagnosed path of this illness. Those not yet ready to see around all the scary corners of the disease, those with so much more life yet to live.
Instead I’ll focus my energy on moving the conversation to one of collaborative change. Because the power we possess in working together is mind-blowing.
In the wake of spring if you are a current or past caregiver, if you are personally touched by a diagnosis, if you are a member of the medical community serving those who face the disease or if you are a member of our current political system, please consider this question and share.
How can each of us advocate “out loud” to constructively and collaboratively change the course of dementia and Alzheimer’s for just one person?