The Gifts of Spiritual Community and Prayer in Navigating Dementia

For the past several years, I’ve been caring for my husband Don in our home. Don has had several strokes; he has dementia and is mostly bed-bound. We have paid in-home caregivers to help with the practicalities, but our individual and shared spiritual and emotional life is a continuing challenge.

Until recently, we had been worshiping at a little country church where Don has family ties. It was a real boost to our spirits each week to make the drive on winding country roads, to sing, pray, and discuss the Scriptures with a small, friendly group that warmly embraced and encouraged us. Now that Don can’t get in and out of our minivan anymore, we’ve been staying home on Sunday mornings. I’m trying to arrange for a van with a wheelchair lift—so far unsuccessfully.

Meanwhile, I spend a lot of time thinking about spiritual community. Don and I speak often of the blessings of each day and speculate as to what God might have in store for us. Most of Don’s memories are of his distant past, but even those need reminding. He loves hearing me tell him the stories I remember he told me, about his grandmother talking to him about the Bible, about times when he felt sad, scared, or excited, what happened, who said and did what. So much of what helps him feel connected is simple familiarity.

When we hit a rough patch of whatever sort, we usually remember to pray together—or rather, I remember, and he thanks me for remembering, and we pray. I participate in several online Bible study groups from different churches. I used to encourage Don to listen in, but he wasn’t following along so now I just tell him when each group is due to start, and afterward a little about what I learned. He likes it that I enjoy Bible study, and I like that several groups of believers are interested in him and pray for us.

Some of the most precious parts of our spiritual life come when one or the other of us slides into despair, depression, or frustration. We used to be equal partners; now our roles are very different. I watch and listen carefully for what seems to be bothering Don, to let him know I get it, to support him in whatever his struggles may be at the moment. When I’m the one having a hard time, I try to find a simple way to tell him that I’m sad, tired, or discouraged, and just ask him for a hug. So far, he’s still able to do that for me, but I can see the day coming soon when even that amount of support will be gone. Fortunately, I have several friends I speak to regularly, and they pray with me.

For both of us, a great deal of spiritual growth comes as we accept that Don is slowly losing so much of his identity, his sense of himself and how he fits into the world, and that I am slowly losing my beloved spouse. People often ask, “What can I do to help you?” My answer is “Pray for us and be our friend.” Friendship, at this point, means mostly just seeing us as we are, accepting the decline and sadness but also sharing our joy, gratitude, and life in the Spirit.