I first encountered dementia when my elementary school class went to sing Christmas carols in a personal care home. One woman in particular caught my eye and I begged my mom to let me bring her a Christmas present. It turned out that she was my classmate’s grandmother, living with the advanced effects of Alzheimer’s Disease.
I remember being confused as the old woman told me the same story over and over again during that 15 minute visit, but simultaneously being drawn to her spirit. It seemed to me that she was a friend, and we understood one another. She smiled at my youth and I marvelled at her age; she held my hand and I held hers.
Twenty-five years later, I did my Clinical Pastoral Education for chaplaincy training in a locked unit for patients with a “special needs” diagnosis of dementia. This means that the men and women were prone to running away, violence, or some other risk to themselves or others. Each day when I visited them, they didn’t have a clue who their families were, let alone who I was.
Sometimes, I would hear staff and families say things like “she’s gone” or “he’s not there anymore” and it broke my heart a little. One woman in particular was abandoned by her children, left without her basic needs met, because they were convinced that she was only a shell. She was my favourite patient, with such a beautiful smile and sparkles in her eyes. I suspected she had been a firecracker, once. In a way, she still was.
The trouble with dementia is not that a person is “gone” well before their body dies; it is that the part of them which our culture values most ceases to function. That is, the part of the brain which creates speech, reason, and learning no longer works, but the emotional and spiritual intelligence remain.
We have become so accustomed to valuing an individual based on the words they say and the work they do that we resign a person to irrelevance if their emotion and spirituality are all they have left to connect with.
When I worked with people who have a diagnosis of dementia, I do not connect with them through words or explanations. Instead, we connect with pictures, prayer, song, and laughter. It is not uncommon for a person who no longer speaks to break out in his favourite old tune because music draws on emotional memory. I cannot count the number of times I’ve sung the hymn, “I Come to the Garden Alone” or Elvis’s “Take My Hand” in an attempt to build connection with someone.
My own grandfather did not know my name or relation to him in the final years of his life, but he knew that I was safe and good. Sometimes, family would try to re-teach him things over and over, frustrating them both because that part of his brain just wasn’t working anymore. Instead, I sang the old hymns and read him Psalms while he smiled and sang along all afternoon. It didn’t matter what my name was then ‒ he knew that we belonged together.
In Genesis we learn that humans are created bearing God’s image. This means that their lives are sacred, no matter what disease ravages their bodies. I believe that, like small children, people living with dementia may have a closer connection to God than those of us who rely so heavily on our wit and reason.
Without a doubt, it is difficult for families when their loved one develops dementia and begins for forget their names. Nothing can remove that sense of pain. But when we realize that a person who has dementia is still quite “with us” and particularly held by Jesus in their suffering, we can see them in a new light.
On the other hand, dementia is a disease that takes away a person’s sense of boundaries and it is essential that they get the care they need. I have taken several lost neighbours home whose families thought they were okay to be out on their own.
The next time you encounter a person with dementia, remember that what they long for most is the same as any human: a sense of connection. Speak gently and try to carry on a conversation even if it makes no sense to you. Smile, and perhaps touch your friend’s hand.
Do not be in a hurry, but be prepared to sit or walk or sing or dance. Remind them of what they love and who they are and try not to treat them like a child. Allow their lack of filters to remind you of what matters most in life and in death: Wisdom is not only found in words.