Lesson 4 – Root Cause – Are You Processing Grief?

Dr. Elisabeth Kubler Ross identified 5 stages of grief as normal for people who are experiencing loss.  Anger and denial are two of the stages.  

Dementia is a degenerative disease. People living with dementia experience so much loss. Loss upon loss. They lose words. They lose items, sometimes important ones. They lose memories that tether them to family and friends. They lose skills. They lose parts of themselves, although other parts remain intact. Losses accumulate slowly over many years.

Saying something mean like “why would you do that,” or “you can do it, you just don’t want to,” or thinking it and snapping at the person, may be an attempt to deny the person has dementia or that their dementia is worsening. It’s understandable that close family and friends would want the person to just change back, to not have dementia.

The daughter came to the apartment to cut her Dad’s hair. She had a knack for it and had bought special scissors and a cape years ago to help him out with haircuts. He said he had so little hair that it seemed wasteful to spend money at the barber. And on a practical level, now that her Dad had dementia, it took forever to get him ready to go out. She was glad she had one less appointment to schedule and drive him to. They usually cut his hair out on the balcony because clean-up was easy on the tile floor. But today, it was too cold outside. The daughter said, I can put a chair in the bathtub for you. The man, who had lived in the apartment for more than 16 years said, “Bathtub? That’s a good idea. Do we have one?”

Witnessing loss is hard. It’s hard to see competent independent people become less so. It’s hard to see people struggle to comprehend and do things that were once easy for them. It’s hard to know that their losses shrink their list of responsibilities and add to yours. Seeing a lost ability presents undeniable evidence that the disease exists, which can continually surprise you.  Even if you know on an intellectual level that your person has an illness, day-to-day confirmations can feel like new insults or reopened wounds. Seeing loss in new activities is often the first indicator that the disease has claimed more brain cells. On some level, care partners may recognize this grief-triggering association: more loss means the disease is getting worse and my person is moving farther away from who they were and from you. That’s a lot to grieve. And anger is one of the stages of grief.