by Colleen Franzreb

“What do we live for, if it is not to make life less difficult for each other?” -George Eliot

Everyone has a story of how COVID-19 is affecting their lives. Our family’s story revolves around my 56-year-old brother Ed — a Marine; the fifth of eight children; a brother, son, and uncle to 25 nieces and nephews — who was diagnosed with FTD four years ago.

Our large, supportive family rallied around Ed at the onset of his symptoms, despite our early frustration and confusion — at the time, none of us had ever heard of FTD, and we mistakenly thought some of his changing behaviors were within his control. Getting an accurate diagnosis took a while. We will always be grateful to the VA for Ed’s initial diagnosis, and to the FTD Unit at Massachusetts General Hospital in Boston for confirming the diagnosis and offering family support.

Because he needs full-time care to ensure his safety, today Ed lives in a nursing home where he receives excellent care. But in March, the facility suspended visitation indefinitely due to the pandemic. After eight long weeks of not being able to visit Ed, my brother Chris came up with an idea, and reached out to a local firefighter and former Marine who owns a tree service business. The owner of Derek Binding Tree Care generously offered use of his bucket truck for an hour on a Saturday afternoon.

The bucket truck was used to hoist various family members up to Ed’s window on an upper floor one-by-one, so that we could see his face and let him know we were still there. Others held signs and waved from the ground below, and some family members FaceTimed in to participate from afar. I think we got as much comfort from the visit as Ed did.

“Doing a good service is like throwing a rock into a pond, the ripples just go on and on.” -Mark Doyle

Our family’s struggle with FTD is harsh and real, and it will continue to get more difficult over time. But for one afternoon, I was so grateful for the reminder of the power of a community coming together to help one another. Our story made the local news, and afterwards our family received an even bigger outpouring of love and support. Many who were not familiar with FTD wanted to learn more, including how they could help our family in the future.

I would encourage all families on the FTD journey that it is okay to ask for help, based on the resources that are available to you. Even in the midst of a worldwide pandemic there are people in our communities who are eager to help.