Doctors diagnosed Jane McAllister with Alzheimer’s disease eight years ago. Alzheimer’s is the sixth-leading cause of death in the U.S. It cannot be prevented or cured, its course as inexorable as the events leading to the passion and death of Jesus. Some 15 million Alzheimer’s caregivers provide 17 billion hours of unpaid, loving care each year. It is not uncommon for patients and caregivers to wonder: Where is resurrection in a disease that takes away our very selves?
Jane wrote these reflections on living, dying and rising with Alzheimer’s with her husband and caregiver, Robert. They tell it like it is but also give hope and assurance not only to others like them but to each of us on the same Lenten journey that is part of life for all of us. However, Jane passed away the Thursday after Ash Wednesday, shortly after these reflections began appearing in NCR.
“When it grew dark he reclined at table with the Twelve. During the meal Jesus took bread, blessed it, broke it, and gave it to his disciples. ‘Take this and eat it,’ he said, ‘this is my body.’ Then, after singing songs of praise, they walked out to the Mount of Olives” (Matthew 26:20-30).
I know you enjoyed being with family and friends, Jesus. You had a triumphal entrance into Jerusalem, and gathered with your closest friends to celebrate the Passover. You delighted in food and wine and conversation and singing. Your friends were unaware your ministry was coming to an end. The shadow cast by Judas wasn’t obvious to them. There is a shadow in my life that is not always obvious to others. I want to tell you about it.
Explore this NCR special report with recent articles on the topic of immigration and family separation.
I am disappearing. I have Alzheimer’s disease.
How will I know when my work is finished? Will I be satisfied with it? My shadow is a darkening consciousness. I can no longer do much that I used to value. I don’t work or sew or wash clothes or iron or clean or even shop for things we need. Tell me, Jesus: What do you want me to be doing with my life now? Even as I ask, my spirit tells me my purpose in life never changes. It is to live each day as well as I can with the gifts and graces you grant me.
But it’s hard when you can’t remember.
When you knew your life was coming to a close, were you anxious? Did you confide in your mother? How did you decide which person you wanted to walk with, to talk with, to be quiet with? Did you ask your Father for more time? Dare I ask if you were satisfied with what you had accomplished?
When I was 30, I felt confident that I had found the right path, the path you wanted me to follow. You were 30 when you began the journey leading to your passion, death and resurrection. How did you feel when you had 30 days left? Were you sad when you thought about leaving your friends?
I’m leaving my friends by forgetting who they are. Will they forget me too? Is that a given for entering eternity? Can I leave something of myself for them as you did for us in the Eucharist? Surely I can leave them love, for you are Love and we all live and breathe in you. My husband, a psychiatrist, tells me Alzheimer’s can take memories away but it can’t lessen the habit of being loving. An old proverb says: “Love is the memory of the heart.” Help my heart remember.
I’m over 80 now, and despite my fears, I’m grateful for the gifts you have showered on me during a wonderful life. I can’t remember much about the past, but my spirit tells me it was for the most part beautiful, even when I didn’t recognize it without the excuse of Alzheimer’s. The most precious gift you gave me is my husband, who is now my caregiver. He has had that role for eight years now, but in some ways he has had it for 50 years.
Sometimes I say things to him I don’t mean to say. He understands where my anger comes from and lets it go. My true feelings for him and our children and our friends are as strong as your disciples were for you. I hasten to express that love as clearly and as often as I can. I think that is my purpose now.
But my thinking gets so mixed up these days. There is so much I don’t remember, so much I no longer understand. While I sometimes feel betrayed by life, like you must have felt let down by Judas, deep down I know you have not forgotten me and will not abandon me. Your comfort embraces me still. Robbie and I get to Mass and receive the gift of Eucharist once or twice a week. Robbie brings me love every day, every moment. I feel your presence in him, and I am comforted. Is that his purpose now?
When you entered Jerusalem, the doorway to your death, you joined the people in songs of praise. I enjoyed singing and used to sing in a choir. My voice is hoarse these days, but I say words of praise with you each day, and someday I’ll sing them when I come home. Help me, Jesus, to fulfill my purpose in life whether I know it or not.
[Jane and Robert McAllister reside at Vantage House, a continuous care facility in Columbia, Md.]
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