I am a co-facilitor of the Boston area FTD Support Group. We meet monthly to share stories, learn new information and ask questions about caring for a loved one with a frontotemporal disorder (FTD). All of our meetings are powerful, but this last meeting made me pause for a moment after the ritual go-around where caregivers provided updates. Anxiety, sleeplessness, fear for the future and struggles to get through each day.
Caregivers talking about themselves, not their loved ones.
I paused because I was struck by the weight of the challenges laid before us. Our caregivers were like soldiers, stopping to reaffirm the war plan, committed to staying on track, even though they weren’t sure what path the road ahead would take. Our caregivers are courageous because they live vows, honor friendships and recognize when support is needed. Courage is needed daily, sometimes hourly, to make it to a place of peace.
My indoctrination into this community of courage and care was that I loved someone with FTD. Loving Mike revealed a tigress in me that I didn’t know existed. This powerful force allowed me to make decisions, provide care, and ultimately, let go.
Today’s tigress doesn’t have to be on the lookout every moment. But, I need her in a new way. To relive my moments of anxiety, stress, and loss. To listen to another caregiver’s story and hear my own. To talk to my son about why his Dad can’t live on earth.
Today was the first day of Love Is Out There, my 36 day campaign to raise awareness for FTD, caregiving and taking the power back from rare disease. The tigress is here. Looking for every connection with another caregiver. Nudging me to share my story and reveal something powerful. To keep going even though I don’t know my destination. To be a voice that makes a difference. #EllenandKatieRDD2015 #FTDAwareness #CaregiverCourage