By: D. Richard Wright (Ojibwe)
My grandparents raised me Ojibwe traditionally, a member of the Bear Clan, Pillager Band. In my age, I am 73, and I do not recall them experiencing memory loss. I went to live with them at age 9 until I graduated at 18 yrs. Not a lot of attention was paid to dementia as it is underdiagnosed.
My mother-in-law, 83 years old, passed away with Dementia and Covid in 2021. She experienced memory loss indicators three years before she passed away. She was placed in a nursing home, then Assisted Living, and eventually to memory care. As she progressed in her need for special care, my wife, her daughter, had to make “Power of Attorney” choices. Many of these were financial and resulted in liquidizes assets she had accumulated all of her life. I want to emphasize these decisions were hard on my wife, hard on me as a listener, and hard on the family who experienced their mother’s demise. The State found her liable for her care towards the end, and she had to sell her home, her car, and use all of her savings, retirement pension, to meet Medicare requirements. This was necessary because her funds dwindled and she had to rely on Medicare to pay for her care eventually.
What made this worse is she was “moved” to a lesser apartment cost unless the family was willing to pay the extra cost for remaining where she was.. This made for many family discussions on decisions, and some were hot emotionally and sad, my wife had to assume most of the decision-making, as she was the oldest sibling. No matter what the decision entailed, it seemed she was under fire for making the decision. She spent many days crying and in emotional turmoil. She was the main caregiver. Mom did not know her daughter. She often asked who she was when visits were allowed, which were next to none towards the end. Covid precautions made it worse. Mom spent days alone in her room isolated. Her meals were brought to her, her laundry was cleaned and brought back to her room. She was essentially a recluse in her own room. When mom passed away, we were not allowed to visit her in the hospital due to policy on Covid regulations. My wife called her mother on her cell phone the nurse held the phone to mom’s ear. It is not known if she could understand as mom did not answer. She passed away alone in her hospital room.
A picture of myself in my office. The beaded cross is of feathers and crosses, to which we all turned to our Catholic faith and traditional Ojibwe rituals. In the end, mom died alone in a hospital bed, unable to see us because of hospital restrictions. My wife’s last words to her mother were on a cell phone held by a nurse, to moms’ ear. The priest gave us some words of faith that God was with her, and she did not go alone. Its been two years and we still have self-blame of not knowing of Dementia and its symptoms that mom showed. We thought it was growing old and mean behaviors.
We offered many prayers and involved our American Indian Parish while mom had Covid with Dementia/Alzheimer’s. Our lodge you wee in the background is symbolic to the sweat lodge. The drying medicines are sage, cedar, and tobacco as “Asema” or red willow.
I joined a Dementia Caregiver Teem, a research team from AZ. I work for IHS Hospital now in Cass Lake, Minnesota. The advice I would give to my younger self is to listen to providers, there are many advantages to primary care directives, exercise, eat proper, and use medications if indicated. Join Caregiver groups. Have discussions on end-of-life for caregivers. Attend listening sessions.
“Stories help to define experience, and omit the emotions. To hear the cry, the visual of shaking shoulders, people sitting in the family rooms, hearing the humor situations, its really about love.”