Betty Lou’s pilgrimage began on May 2, 1933. She was raised with her five younger sisters in Freeport, Illinois, attended a Dominican High School, married a good Catholic man from Cedar Rapids, IA, and raised her four children in Bensenville, Illinois. She was faithful in marriage and in her Catholicism, singing in church and volunteering at her parish. One day, 11 years ago, she left for the grocery store at 8 a.m. and disappeared.
We, her family and friends, had noticed signs of a problem before that day, but had not put together the pieces of the puzzle. Large amounts of unused groceries would multiply in the refrigerator and she would ask the same questions repeatedly. Birthdays and anniversaries were missed. We hoped that it was not what we thought it might be, but our attempts at discussing the topic were rebuked.
What happened the day she disappeared? Betty Lou would eventually return from her early morning jaunt to the grocery store, but not before a day filled with worry, anxiety, doubt, frantic searches and prayer. Family, friends, and parishioners mobilized a futile search for Betty Lou throughout DuPage County. We had almost lost hope of finding her when, 12 hours after her departure, she drove into the cul-de-sac where she lived. Despite our best search efforts, it was prayer alone that proved effective. God seemed to be saying to us, “Trust me! Betty Lou is my dear daughter. I will bring her home.”
The final pilgrimage had begun. We brought Betty Lou to a doctor who specializes in geriatric medicine. The doctor began a complete battery of tests, including a visit with a behavioral psychologist. Betty Lou was definitively diagnosed with Alzheimer’s disease. She lived with my Dad for 7 more years until we were able to admit her to a memory care facility. A year and a half later, Bishop Conlon graciously allowed me to bring Betty Lou to live with me at the rectory at Saints Peter and Paul Parish in Naperville, where I was the pastor at the time.
Although I was happy to have my ailing mother with me in the rectory and to ensure her care was impeccable, she collapsed and was rushed to the hospital only a couple weeks after her arrival. She was diagnosed with a condition she had had for some time: a perforated colon and serious internal bleeding. We were told death was imminent. Family flew in from Texas, and the entire immediate family spent each day at the rectory. My siblings had never spent so much time at church! Parishioners brought food and offered moral support. Hospice was called. God and his close friend, Betty Lou, had different plans.
Betty Lou graduated from Hospice 19 months ago and has outlived her diagnosis by 24 months.
A pilgrimage is a sacrificial journey to a sacred place, and Betty Lou now makes the most important pilgrimage of her life to the most sacred of places. The final pilgrimage we thought would end two years ago continues. Although the time will come when she will step forward to take a hand that will lead her away from us, we, her family and her friends, are determined that she will not make the earthly leg of her pilgrimage alone.
We are all making this pilgrimage with her. Over the last 11 years, we have gone from being annoyed by frequently repeated questions to cherishing every word she utters. We may, at times, be able to glean some meaning from her infrequently uttered words reminding us that Betty Lou is still with us. Her favorite and most oft repeated phrase is “Ave, Ave, Ave.” When we ask her, “You love Blessed Mother, don’t you?” we get an emphatically affirmative nod.
She still prays her prayers, although the words are now almost unintelligible and we must finish them. She still eats, even though, at times, a requirement of her eating is that the feeder hold her hand and sing “Immaculate Mary.” If the feeder does not sing, then Betty Lou sings and does not eat. One way or another, she has motivated her family, friends, doctors, nurses, technicians, orderlies, ambulance drivers, acquaintances and caregivers to sing and to pray to the Blessed Mother.
I have learned a great deal as I have walked this pilgrimage with Betty Lou, but a couple lessons stand above the others. The first and most important lesson is that we must not let those we love make their final pilgrimage alone. This first lesson has a human and a divine piece. On one hand, each of us has a responsibility to care for those in need. We read the words of our Lord in the Gospel of Matthew, “'…whatever you did for one of these least brothers of mine, you did for me.’”
My mother no longer recognizes her husband of 61 years, yet he is there with her every day feeding her. I was once advised, “Remember! She may not know who you are, but you know who she is.” On the other hand, God does not forget his faithful people. My mother lives in a world in which those who bathe her, change her, and feed her are new acquaintances every time they assist her. This isolation would be particularly terrifying for her except for the two people she still knows intimately: Her Lord and His Blessed Mother. What is left of my mother when everything else has seemingly been stripped away? Her relationship with these two persons. Praying with her is the most important thing we do each day.
The second lesson is that Alzheimer’s patients do not lose their identity. There is no doubt that my mother is slowly and systematically being stripped of so much that made up her life here on earth. She can no longer cook or bake. She can no longer dance or walk. Even her ability to speak, or at least make herself understood, is rapidly being taken from her. When all is said and done, what remains? She still sings and prays. I have often wondered, what will be the last thing of me that will remain? I hope it is not anger and frustration. I hope I can follow my mother’s example making my last act a song and a prayer.
A priest friend once reminded me: “Remember what we learned in seminary. The intellectual memory resides in the soul and the human soul is immortal. This means that although the body is damaged and the mind cannot express itself as it desires, there are memories she retains eternally.” At this point in her life, Betty Lou's identity lacks all ambiguity and unnecessary complexity. What she is now is who she has been all of her life in the depth of her soul: a woman more concerned about others than herself, a sweet woman wanting to love and be loved, a woman of great faith.
My mother has value and worth, but not for what she can give me or do for me. Her dignity arises from the fact that God created her in His image and likeness. She continues to carry that likeness in her. The greatest thing that I have done as a priest is hold Jesus Christ, the Son of God, in my hands. The second greatest thing I have done is hold the ailing, broken body of my mother, who was created in God’s image and likeness.
Betty Lou has not disappeared. She is on the greatest pilgrimage of her life to the Sacred Place. She said to one of our caregivers recently that she will soon go somewhere else, and she often stares into places we cannot see. Elizabeth Louise has great faith without presumption that the One she remembers, knows, and loves will call her home and make her what her heart has always desired.
Fr. Thomas Milota is a priest of the Diocese of Joliet and has served as pastor of Saints Peter and Paul Parish in Naperville, the Director of Pastoral Formation at the Pontifical North American College and Director of the Joliet Diocesan Respect Life Office. He is presently on temporary leave to care for his mother full-time.