Dementia and Pre-death Grief
When a loved one has dementia, grief starts long before death. It seems that you lose that person bit by bit as memory is lost bit by bit. Every step down that road is a loss. They are not the same person. If it’s a parent, first, they don’t remember your adulthood. Next, your childhood is forgotten. Then, they might not remember you at all. If it’s a spouse, a sibling, or a friend, your entire relationship may end up forgotten.
What Exactly Is Lost?
When my mother was hospitalized after her accident, it took us a while to discover how much of her memory was lost. She was disoriented, delusional, and hallucinating in the hospital. It was clear she didn’t know how to eat. It was also clear that she didn’t remember she was too weak to stand because she kept trying to get out of her hospital bed.
Somewhere along the way, as Mom stabilized and started to heal, we realized she had lost ten years, including the eight years she lived with my sister and brother-in-law. Because that was not an easy time for my sister, the fact that Mom couldn’t even remember it was a big blow.
Through conversations over the next month or so, we discovered that Mom didn’t remember at least the past thirty years. Putting it into selfish terms, that is over thirty years of your life that your parent doesn’t remember. Given that I was sixty-one at the time, that was at least half my life, almost all of my daughter and son’s lives, and all of my two grandson’s lives. Wiped out.
I became afraid to ask what, if anything, Mom remembered before that. I still don’t know if she remembered anything of our childhood. There were very important life events in her adult life and in ours that I never had the courage to ask about. I didn’t want to distress her. I didn’t want to distress myself. We just lived largely in the moment and in her memories of her own childhood.
So, depending on how fast the dementia progresses, there’s months or years of loss and grief before death. With a physical decline, a person is for the most part still there, still present. With dementia, the brain—that which makes a person that person—is progressively lost. It’s a very strange disease, distressing and confusing for the patient, frightening and full of grief for the helpless family. It is different from anticipatory grief. It is active prolonged grief.