But the mountain falls and crumbles away, and the rock is removed from its place; the waters wear away the stones; the torrents wash away the soil of the earth; so you destroy the hope of mortals. Job 14:18-19 NRSV
When my mother was informally diagnosed with dementia, it came as a shock. Even though she was in her late 80s at the time, and even though there is a history of dementia in her family, and even though she had become quite forgetful—all factors that should have taken some of the surprise out of the diagnosis—it still came as a shock.
She had been doing very well, living independently in a senior living apartment. She had many support systems in place. Neighbors who watched out for her. Staff who checked in on her. And me. I stopped by daily to see her and to help in whatever ways I could.
But when she fell and fractured her pelvis, she went first to the hospital and then to rehab. The staff noticed that her memory had slipped significantly. So much so that she couldn’t remember directions for more than a couple of minutes. And so in a matter of weeks, Mom went from living on her own to living in a special care unit—a part of the nursing home dedicated to people with dementia. It was a shock.
People receiving a diagnosis of dementia—including Alzheimer’s disease—will often go through stages of loss and grief. These stages, first proposed by Elisabeth Kubler-Ross in her 1969 book On Death and Dying, include: denial and isolation; anger; bargaining; depression; and acceptance. There are countless variations in the ways people go through these stages. But together they describe the emotional roller coaster that is common to people dealing with loss and grief, including those who are diagnosed with dementia.
In some ways, receiving a diagnosis of dementia is like receiving other dreaded news: I want a divorce. You have cancer. You’re fired. Bad news comes as a shock and when the shock begins to wear off we begin to move through the stages of loss and grief arriving finally at a place of acceptance and—possibly—hope. Hope that we will get through it. Hope that life will get better. Hope that we can make a new beginning.
What is so different and so difficult about a diagnosis of dementia, of Alzheimer’s, is that people feel like there is no hope. They begin with shock and move into the early stages of loss and grief, but how does one get to acceptance when there is no chance that one will get better? Where does one find hope when one knows that a “living death”—the body continuing to function while one’s unique self is slipping silently away—is inevitable?
In the passage at the beginning of this article, Job cries out to God. Cries out against God. In all of Job’s suffering, what is most difficult to bear is this: there is no hope. Mountains crumble. Rocks and soil are washed away. What seems so solid one moment disappears the next.
Job has discovered that life can be like that. All can be well one moment. You have everything under control. The future is full of prospects just waiting to be explored. You feel like you are on top of the world. And then, wham! You are diagnosed with dementia and the mountains of opportunity crumble and the future collapses. And what is most difficult as you look at this new world created by this diagnosis is that there seems to be no hope.
It must be said that one cannot understand—rationally, emotionally, spiritually—what it is like to be diagnosed with dementia until it is you yourself receive that diagnosis. But if you can imagine what it is like to suddenly have no hope, then you can get the briefest glimpse of a life that is crumbling, slipping away with each passing moment. And getting that glimpse may give you just enough insight to stop and be present to someone who has heard the words, “I’m sorry, you have dementia.”
By Greg Wilcox, M.Div., D.Min.
Vice President for Mission Effectiveness and Senior Pastor
The Evangelical Lutheran Good Samaritan Society
Editor’s note: Sincere condolences to Greg Wilcox and his family in the passing of his mother, Billie (pictured above). Billie passed away on March 20, 2012. Greg submitted this article shortly before she died.