“Alzheimer’s.” The dreaded diagnosis given to my wife in 2010 landed like a death sentence. Not just for Gail but for us, for our marriage as we knew it. We had waited long for each other, meeting when I was 43 and she 45, both on the other side of midlife crises. The idea of losing any of our remaining years together to this disease was heart-wrenching.
But it also set in motion a journey, one available to anyone who faces such life-altering news and is willing to ride on the power of faith and love. We had a choice to make: Do we move into Alzheimer’s or run from it, fight it? When Gail and I met in 1987 we found in each other the spark and the values—faith, community and service—that we had each long been looking for.
How could I choose other than to embrace Gail along with the Alzheimer’s? We decided to move into the disease, to make the most of our life together, one day at a time, walking consciously into the unknown. It was a decision made once but reaffirmed countless times since.
How could I choose other than to embrace Gail along with the Alzheimer’s?
After the diagnosis, we intensified our volunteer commitments, Gail in hospice care and parish activities and me at a soup kitchen and as a volunteer chaplain at the county jail. We traveled a bit until that became too overwhelming for her. We maintained an active life: walking, getting out to movies and parks, collaborating in household tasks. As the disease progressed, I accompanied Gail to her efforts and brought her along to mine. Friends near and far who learned about Gail’s condition held us in their concern and prayers. We rode, and continue to ride, on their energy.
Before the summer of 2014, I was not yet doing intensive caregiving. Then things changed. One by one, Gail’s involvements became too problematic to continue. Her hallucinations and agitation intensified—the demons of frustration, anger and fear attacking and belittling her deteriorating mind. We figured out how to cope with incontinence, her loss of interests, her decline in speech. Still, the strain of being present to Gail, feeding her and supervising all her activities, doing the practical work of running the house, coordinating doctor visits and overseeing medications—it was intense.
In the New Year, Gail’s mental and physical decline accelerated. Caring for her at home alone, I realized that we were on thin ice, one setback away from disaster. One devastating day, an infection left Gail too limp to stand on her own after going to the bathroom. There she was on the toilet, a mess and pants down, and I was unable to help her for hours until friends came to our rescue.
The ice finally cracked in May. A bad chest infection and a urinary tract infection set in. Gail had a major seizure that landed her in the hospital and from there, unable to walk, a nursing home.
A Privileged Time
I have been told, “You cannot be both caretaker and husband.” This bothers me: How can I not be both caretaker and husband to Gail? Our relationship has evolved into one that includes much caretaking. If I had family in town, or three hands, maybe Gail would still be at home. But I do not. So the Willows nursing home it is, on the fourth-floor dementia unit.
I go every day, feed Gail lunch and supper and stay until she falls asleep. I want to do everything I can to reassure her, to ease any lingering fear. I try to keep Gail engaged in life through little routines we repeat each day: helping her to stand and walk, listening to music, pushing her wheelchair through the facility to connect with others and through the lovely surrounding neighborhood. Gail is still a loving, social person. She brightened the lives of staff, residents and visitors last year by saying: “I love you. You are so special.” She does the same now just by shining her sparkling smile when they make eye contact. For 29 years, I have been blessed by this smile and love. It is a delight to see her light up the lives of so many others.
From the outset, I knew I was powerless to defy Alzheimer’s. I still experience this realization daily. Hard as it is, we have experienced abundant blessings all along the way. For me, two attitudes are necessary. The first is living in the present. Here, trust is key: trust in God; in my own creativity as new challenges arise; in friends and the power of their love, concern and prayers. We can certainly make ourselves worriers, feeding all the feelings triggered by overwhelming challenges. To purposely refuse to fuel these fears, worries, guilt, feelings of inadequacy is crucial. God gives us the cross but also the help to carry it. This I believe, and it has so far proven to be true—not always to the head but to my feet, one step at a time.
God gives us the cross but also the help to carry it. This I believe, and it has so far proven to be true—not always to the head but to my feet, one step at a time.
The second is trusting that the loss experienced each day is only part of the picture. Dealing with Alzheimer’s, we are at the edge of mystery: the medical unknowns, the mystery of diminishment, death and whatever is beyond. No one knows what God has ahead for us. Jesus understands our anguish: “My God, my God, why did you abandon me.” The belief that there is life beyond death does not ease the pain of approaching it. But do I cultivate hope or wallow in despair when God has been so good to us in the past?
Death is coming. I have many experiences of bone-crushing sadness. But I refuse to let death claim our lives before it arrives. Trying to make each day as good as I can is worth the effort. We sit. My mind wanders, and I do not know what is going on in Gail’s head. I remember a comment from a friend whose wife died of a brain tumor: “I dreamed of us sitting on the porch when we were old.” Gail is far too young to be old. I do not know how much older she will get. But sitting outside looking at the lovely scenery, sitting waiting for her to fall asleep—these moments are special in a way I cannot describe. Time is empty in a way, rich in a way—punctuated periodically by “I love you,” me to her or still, occasionally, her to me. I do not know how much Gail benefits from my presence. I think she does. I hope that it dissolves any lingering fear she might have. I know that I benefit from her presence. To care for her is a privilege.
A couple of times a week I read Gail the letter I wrote on the day I asked her to marry me: “Sharing the bread of life in good times and bad, open fully to the miracles the Lord will work through us. Loving with open hands, not clinging.... All this I want. I want our lives to make music and dance together, overflowing to others...to cry, to laugh, to love! I love you, Gail!” I reassure her that this is just as true today. Even though she cannot understand the words, I can usually still spark a smile. Caregiving frames these moments to treasure. This is the blessing of our lives. I want to nurture the spark of our love for as long as I can.