Because we can’t control how and when we are going to die, most people don’t plan their death. However, many of us have a goal of dying in our sleep while we are still active and pain free, but close to 100 years old. In our society, we typically think of death as a bad thing – even in the very old.
In hospice, our goal is to facilitate a good death and believe that is not an oxymoron. One of the most difficult deaths to “make good” is with people living with dementia who seem to linger in a state so unlike who they were. I will hear, “I hope this is over soon, that is just not my husband (wife, mom, dad, etc.”) Or, “They wouldn’t want to be like this if they knew what was happening to them.”
Many of us may think the same – “If I get like that, just take me out back and shoot me!” (Metaphorically speaking, of course!) Today I was pondering about how the dying person with dementia is not so different from a newborn. Neither can walk, talk, sit up by themselves, feed themselves, clean themselves, etc. With a baby – it is cute, with an elderly person – it is very difficult on the family to experience.
What is the difference? Well, there are many, but to begin with, the infant has their whole life ahead of them and we have hopes and dreams for them. With the elderly, their whole life is behind them and hope for something more or better is gone. But I ask you – is the elderly dying person less valuable than the newborn person?
What if the person with dementia can hear and see and feel with their spirit? The body and brain are faltering, failing, and dying, but does the soul (I am using soul and spirit interchangeably for this discussion)? Have you ever heard stories of people who were unconscious and later said they felt like they were in a corner near the ceiling and they could hear and see everything going on around them? What if people with dementia have that same experience? What if you knew their spirit was hovering above their body and they could experience love, joy, and peace (or the opposites) even after their brains cells have died?
Death brings sorrow for the living, and death of dementia patients can be conflicting. Years and years of struggling with the loved one’s diminishing personhood takes a toll and death seems like a relief. But there is so much we don’t know. How can we find ways to value, love, and nurture the one who is fading out of life and make their life count until the very end?
Tess K., BCC, MAR, M.Div
Spiritual Care Provider Coach