[Jesus said to Peter] “… when you were younger, you used to fasten your own belt and to go wherever you wished. But when you grow old, you will stretch out your hands, and someone else will fasten a belt around you and take you where you do not wish to go.” … After this he said to him, “Follow me.” – John 21:18-19
I don’t know anyone who dreamed joyfully of becoming a dementia caregiver some day. I know I didn’t. Like Peter in the gospel, I was taken where I did not want to go, dragged there by the hard-fastened belt of my mother’s dementia. For a long time I felt as if my life had been stolen from me.
Being taken where I didn’t want to go was painful, by definition I suppose. But I think that my perception of the experience only made it harder for me to bear. I now believe that Peter’s belt, and mine, may have a more gracious meaning. Though I didn’t enjoy its dragging, it was there to bring life rather than to steal it from me.
This internal paradigm shift began for me with a short phrase. I was reading the daily scripture, which included the story of Jesus walking on the water. When the disciples saw him, it says, they thought he was a ghost. To calm them Jesus said, “It is I.” When I read that sentence it was as if Jesus were speaking to me, saying that all I was going through with my mom was really an encounter with him. I sat in silence a few minutes, trying to absorb these words.
Seeing myself drawn into this new world by God, rather than by a disease, transformed my attitude toward caregiving. I began to understand that the belt pulling me was the belt of sacred vows – vows taken at baptism to “seek and serve Christ in all persons, loving my neighbor as myself,” to “respect the dignity of every human being,” to keep the commandment “honor your father and your mother.” When I affirmed those vows long ago I had no idea they would lead me here, yet here I was. And if I was being dragged to this work by the belt of sacred vows, then the task itself must be sacred.
Gradually I began to view caregiving as a holy assignment. I tried to see myself shedding light in the darkness of dementia. I was like salt, trying to preserve quality of life for my mother. I was a fountain of living water for my mother, when she thirsted for my respect and my patience. Trying on each of these metaphors helped me, bit by bit.
I began to affirm the reality of Jesus’ words “It is I” while I sat with my mom, visiting her in the care home where she lived. Through this spiritual exercise, my resentment gradually melted away. By the time my mother died, we had both found a measure of peace.
Of course, my friends will probably laugh if they ever read this entry. I doubt that any of this was apparent to them, as I complained of all the difficulties and confusion in what I was doing. As with most spiritual experiences, I see it more clearly looking back. Maybe my friends will too.
I don’t pretend that this makes caregiving easy. It certainly wasn’t easy for me. But I found that these little practices helped me, so I pass them along to you, with a prayer - that you may see yourself engaged in this holy task of caregiving, and find your own peace in the midst of tending God’s sheep.
