Walking with my mother through dementia has had many unexpected outcomes. None of us expected she would live with the disease for over 20 years. The progress has been very slow. It has changed us. In the first decade, my brothers and I provided “assisted living” in the family row home in Baltimore city several times a month. In the second decade Mom lived first in upscale assisted living, then in a trustworthy nursing home run by Catholic sisters.
During her illness I have visited weekly. After losing touch with who I was exactly, Mom thought I was her best friend from high school. Then even this memory faded, and while she hasn’t recognized me for many years, it is clear that we have a bond. I have come to understand my mother more as a person. I see her more clearly as the youngest of five girls, pleased to follow others and to listen rather than to command. She has also said things about me that I didn’t know, not realizing she was talking to me. An astounding moment was when she looked at me and asked, “Are you me?” At first, our family shared deep grief that lasted many years. By now, each day with mom is a gift. I can still hear her laugh and hold her hand.
A scientist, I saw the dementia as a brain condition, and focused on learning about the science, the neuroscience, and tangibles like the medications. I had long been an atheist and was only beginning to return to religion. It felt devastating. How can God allow Alzheimer’s? There seemed to be no good outcome. Then came surprising sentences from Mom at a time when she could not usually put words together. I said, “How are you Mom?” and she said, “I know he knows me.” She was not one to speak religiously, but coming from our shared background, I heard this as evidence that she believes God is with her just as before.
I grieved her losses over the years – telephone calls, managing money, the house, the furniture, memories of childhood, continence, church, walking, feeding herself. Was renunciation of these worldly things like an ascetic journey? I also noticed a continuing quality to Mom. She said, “I’m the same.” By her tone, I intuited that she meant that she feels the same inside. She is the same person. Against Mom’s losses bit by bit, what survives stood out in bold: the ability to enjoy music and touch and nature, a spiritual sense, and most of all, love. Whereas many losses can be explained because they correlate with the spread of the disease through specific brain structures, I wonder why these moments of connection survive – can science explain? I learned that material things are not that important and I began to simplify my own life. My own spirituality grew.
I began to realize that I was finishing my busy science job as a natural growth process, and was drawn to the satisfying experience of visiting Mom and her neighbors and their families. While I loved science, I began to see its limitations in the face of this disease. I desired more of a focus on the inner world. For years when I was struggling with the grief, I carried a slip of paper in my pocket with this, quoted by my rector in a sermon.
Love is a tangible reality. Sometimes it is born of passion or devotion; sometimes it is a hard-won fruit, requiring hard work and sacrifice. Its source is unimportant. But unless we live for love, we will not be able to meet death confidently when it comes. I say this because I am certain that when our last breath is drawn and our soul meets God, we will not be asked how much we have accomplished. We will be asked whether we have loved enough. To quote John of the Cross, “in the evening of life, you shall be judged on love.
(Johann Christoph Arnold)
(Johann Christoph Arnold)
I decided to end my science job and enter seminary full time, where I could study theology and ministry. I sought explanations for all that I observed with Mom’s dementia.The experience was an immeasurable blessing and gave me new resources and reserves to help my mother and myself, and - along with my family and friends - helped carry me through the experience of Mom's peaceful death from end stage Alzheimer's.