The views expressed in this blog are the author’s own. The Alzheimer Society of Ontario recognizes that caring for a person with dementia in the final stages at home is not an option. We have been working to strengthen the skills of professional caregivers through more dementia-specific training across the health and social service sectors.  Read about our U-First! training program, Behaviour Supports Ontario or the Ontario Retirement Homes Act of 2010

As we grow older, more of us see our parents and loved ones start to get sick and die. It’s easy to feel helpless. But end of life experiences vary greatly; much can be done to ease a person’s passing for everyone involved. The contrasting experiences of my parents show how providing proper care and being surrounded by love is so important.

My dad died of pneumonia and complications of Alzheimer’s disease in 1995. At that time, the general public knew very little about Alzheimer’s disease and our family was advised by the doctor not to even tell my dad he had it.  Things have changed so much now especially with help the Alzheimer Society of Ontario can offer to families and caregivers.

It must have been lonely not only for my dad, struggling to make sense of his deteriorating life, but for my mom, his caregiver, as well. His condition deteriorated quickly. Soon, my mother could no longer care for him and we decided to put him in a care facility.

When he walked through the doors of the nursing home, he believed he was visiting for the day. He begged to be taken home after realizing the truth and was medicated rather than treated for his fears. We tried to show him we loved him and visited him every day, but his sadness at being left there always filled the room. He said the attendants hurt him; we didn’t want to believe him. He said he needed to go home; we thought we knew better.

One night when I visited, I found him in a horrible state. He was alone at the dining room table with his head leaning on the table and his arms flopping like useless noodles. Straps prevented him from falling out of the wheelchair. Nothing in the world prepares a person to see a parent like that. I held him and raged at the attendants who told me: “There was a mistake in his medication. Too much anti-depressant but the doctor corrected it. We thought he might wake up and want to eat.”

I know now the facility had neither the staff ratio nor the expertise to provide specialized care to its many Alzheimer’s patients. Today, there are excellent programs like U-First,a leading dementia education and training program in Ontario.

His condition got worse and then he got pneumonia. We had the chance to put him on life support or let him go. It was the hardest decision in the world but my mother, with the support of most of the family, gave instructions not to hook up the feeding tube. He would have wanted it that way. He died in the nursing home on April 12, 1995.

It was difficult to forgive ourselves for not knowing what to do to alleviate his suffering and fears. Fortunately, the Alzheimer Society of Peel was there for us. My mother connected with people in the support group who had been through the same thing and the experience helped her heal.

Ten years later, after suffering a small stroke and two bouts of esophagus cancer, my mum got an aggressive brain tumor. The specialist told us she would lose her facilities and be dead within four months. Another parent dying of a brain debilitating disease: what a shock! We were fortunate to have the resources to rally around her so she could die at home.

We used every government and private resource available to us. My brother and sisters and I also took shifts to see her through. Hospice of Peel-Mississauga helped us access a nurse who came in every day to help. A hospital bed and special chair were all brought in at no charge.  We counted her pills and made meals with care while she could still eat.

When she could no longer talk or move her limbs or eat, we let her go peacefully just like she wanted. She was content and calm right to the end and had none of the seizures the doctor told us would come. I think that’s because she was allowed to die with dignity and surrounded by love during her final days.

Karen McCall

Volunteer Blogger