Words do not come to me as easily as they once did, especially when my brain is tired from travel. The recovery takes a little longer, and I am learning to listen when my body and brain tell me I need to rest. One of the ways I hope to continue advocating as my abilities change is to uplift the work of other people who have helped, challenged or inspired me, such as the Rev. Dale Susan Edmonds, founder of Talk-Early-Talk-Often.com and a Huffington Post contributor. Her article “Alzheimer’s in God’s House: The Empty Pew” echoes the conversations Emily and I have had with countless church leaders throughout the country over the past year.

“Frequently, the needs and concerns of family caregivers go unrecognized and unaddressed in local congregations. Not because the clergy and congregants are suddenly uncaring, but because they don’t know and don’t understand what’s going on behind closed doors.

A common locus of invisible need is found in the families struggling with Alzheimer’s. One single person may have the disease, but the impact is felt by an entire family. And the ripples alter an entire faith community.”

— Rev. Dale Susan Edmonds

Emily and I both feel that speaking to clergy has been one of the most valuable and rewarding parts of our journey. As dementia progresses, people disappear to the sidelines. But in communities of faith, we have to stay in connection with families affected by this disease. More than prayer, they need our active presence.

This means we need to come close to that which we fear.

I can relate to the way Rev. Edmonds describes the multiplication of losses that happen for families coping with dementia: “Loss of partner, loss of shared decision-maker, loss of roles/functions in the household, loss of shared memories and humorous stories, loss of identity as the person no longer remembers themselves, his or her children or the spouse.” And I appreciate that she challenges us to answer the question, “So how does a congregation learn to deal with Alzheimer’s in a constructive and supportive way?” Read Rev. Edmonds’ article for specific ways faith communities can serve families struggling with this disease.

We’ve got to talk about it.