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  • Amy Agape

Rituals and Dementia

The call awakened me; the sun had not yet risen, and I wondered who was phoning at this early hour. “Amy,” I heard my father’s voice as I answered, “Big Jim died.” Shocked, I jumped out of bed and began to ask questions. When I visited for Christmas a few months before, my grandfather had seemed tired but not sick. As we learned a few days later, he had never shared with any of us his cancer diagnosis. Ever a considerate gentleman, my grandfather had not wanted to worry his beloved family members.

He had also not shared with us something equally significant -- changes in my grandmother’s behavior, in her cognitive functioning, and in her memory. Again, he likely did not want to concern us. As our family gathered together over the next few days, these things began to become apparent.

There were so many events held to honor my grandfather. In his adopted Georgia home, throngs of people attended both his viewing and a funeral at his church. There were neighbors, members of his Sunday School class, peers from the Masonic temple. Folks came to honor the decades he spent in the US Army, and others to honor the years he had faithfully served as a Justice of the Peace in his small town. Hundreds of people spoke to me of his kindness, his generosity, and of his love.

Once those rituals were complete, we traveled to Ohio to repeat them in his hometown. Another viewing. Another funeral. More neighbors, Masons, friends from long ago. More people speaking to me of Big Jim’s kindness, his generosity, and his love.

And throughout this time, my grandmother’s behavior seemed to be that of a grieving widow but also of someone else -- of someone with what we would later learn were results of the dementia that she had been experiencing for perhaps a number of years. In these early days of public awareness about Alzheimer’s Disease and other forms of dementia, people -- including my grandparents -- often tried to hide what was occurring. I believe that when my grandfather began to notice changes happening to Grandma, he decided to quietly accommodate her new behaviors.

In the weeks following Big Jim’s death, it became apparent that my grandmother could not live independently; our family quickly adapted to a new phase of care for Grandma . . . and a new one after that . . . and then another new one. Her environment continued to shrink as the disease advanced throughout her brain. She went from having family members live with her in her home, to being moved into their homes, and finally to living in a memory care unit.

Eight and a half years later, she too died. There weren’t multiple ceremonies to honor her life. Nothing was done in the adopted Georgia home, which she had left years before. A very small number of family members gathered at the funeral home in Ohio to honor her passing. By the time of my grandmother’s funeral, almost everyone had exited her life. There were so few of us left to memorialize her -- perhaps even to mourn her -- because in the years after her husband died, friends seemed to decrease in proportion to the changes in her executive functioning.

And this was not unusual in the 1990s. Then, a death caused by Alzheimer’s often occurred without the customary rituals used to memorialize a person’s life.

What I now wish is that the people who loved my grandmother had thought to have rituals throughout those eight years -- maybe a going away when she could no longer attend Sunday School and services at her beloved church, perhaps a memorial when my family moved her out of the home she had created and shared with her husband for decades, certainly some ritual to honor her transition from my parents’ home and into a memory care unit. Each of these significant changes in her life was in some ways a death; and each of them deserved a funeral.

These deaths were not of my grandma, but of the ways in which we related to her. What might it have been like to have rituals that honored the ends of those?

Many years after Grandma died, I met a wise woman, now my friend and colleague in the world of spiritual direction. When her husband was in the early stages of dementia, she realized that none of the plans they had made for the future would be fulfilled. She had the wisdom to have a ritual to honor the end of something significant years before her husband actually died. She was not creating a ceremony for him; they were very much still in relationship and would continue to be throughout the final years of his life. Rather, she created a ritual to say goodbye to the plans and hopes they had. Those plans faded over time, as the disease affected his brain and his behavior. Gone were the travels they would take, the pastimes they might engage in together after retirement, the ways their life would take shape in their later years.

And all of that -- the dreams, the hopes, the plans -- deserved to be memorialized. Creating a ritual to honor the life that they would now never share actually allowed her to engage fully in the life that they still had together.

To be in relationship with someone with dementia we would all benefit from having memorials, from allowing ourselves to grieve each of the losses along the way. We would not be memorializing the loss of the person, who is very much still with us. Rather, we would be saying goodbye to the ways we relate to them.

I never considered having such rituals as my grandmother’s health declined. But I did have my own way of saying goodbye throughout the eight years of relating to a grandmother with dementia. I journaled constantly during those years, allowing myself to grieve the passing of different parts of our relationship. I grieved when she stopped sitting at her vanity and meticulously applying her make-up, something I had watched her do since I was old enough to sit on a chair next to her. I grieved when I realized that she was no longer able to track my conversations about school and relationships. I grieved when she lost interest in the soap operas (her “stories”) we had shared for decades.

And somehow that grieving all along the way enabled me to continually be aware of how much of my grandmother and our relationship still existed. By honoring each ending of our relationship, my presence with Grandma increased -- as did my awareness of the beautiful essence of her being, beyond any ways of relating we had relied upon before.

During a visit to her in the final years of her life, one of my family members became frustrated; “She doesn't even know we are here,” he muttered. Gently turning her head with my fingers, I gazed into her eyes -- eyes that had not seemed to focus on anything in months -- and said, “Grandma, you know we are here, don’t you?” For one brief but unforgettable moment, my beloved grandmother gazed directly into my eyes and emphatically nodded her head.

Thirty years and thousands of visits with dementia patients later, I strongly believe that dementia does not kill the essence of our loved ones. Indeed, sometimes, without all the habitual ways of relating to others we all rely upon so heavily, folks experiencing dementia seem to become more fully their essence. So I would never suggest we say goodbye to them before they are gone.

But I would encourage each of us to say goodbye to the various ways we engage with them as, one by one, those ways disappear.

When we do that, when we create rituals to honor the passing of those parts of our relationships, we bring ourselves present to the relationships we still share.

In that moment with Grandma, it was clear that it was not my grandmother who did not know who was present. It was many of us around her who may not have known that she was present. We were looking for signs of her in the old ways we had related to her. But by acknowledging and mourning the absence of those signs, I was able to see what remained.



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