Before I became a Social Worker, I wanted to be a teacher. And before I wanted to be a teacher, I vaguely remember wanting to be a banker or a cashier. When I was 12 years old, my father, who was a financial controller for a business firm, suffered a brain injury, called encephalitis, which was a swelling in the brain. He lost his ability to speak and express himself in coherent words. He lost his ability to recall how to do basic functions of self-care. I watched my mother transition from a secondary provider to the primary provider, as well as, a caregiver. I observed her stress levels increase and her physical health deteriorate because of it. My father never really recovered. I think we, as a family, just learned to adjust to the new language he spoke and the reminders that he needed on an everyday basis. We observed him become progressively more irritable and frustrated because of his inability to communicate his thoughts effectively. My mother’s hypertension and angina were often affected with the added stress that my father’s sudden change in presentation and needs brought to the family.
Fast forward approximately 10 years. My mother and father hadn’t worked for about ten years due to health reasons. They were living on their pension in a house they couldn’t afford (I found out later). I had just graduated with my undergraduate degree in Psychology and I had returned home to live with my parents. The plan was to save money, find a job, and begin my life, right? But shortly after I moved home, my mother became very sick. For days, they did not know what it was. “Your mother is very sick,” they would say. I knew what that meant. I heard it all the time. It was their way of telling me that it was not looking good. It ended up being sepsis due to an untreated e. Coli infection. But she was fighter and she recovered.
When my mother was discharged home, my university education in social sciences kicked in and I became a full-time nurse and caregiver (of course I say this sarcastically, because I had no clue what I was doing). I woke up throughout the night to check my mother’s vitals. I administered her medication and prepared her diet. I helped bathe her and walk her to and from her bed to other parts of the house. I drove her to her appointments and took detailed notes. I was 22 years old. And when I got married a few years later, I moved them into an apartment below us to make sure that they were taken care of. Eventually, my father’s confusion became worse and he became a risk to his own safety by wandering away from home without letting us know where he was going. We tried a retirement home, which allowed them to live independently. But this did not work because it did not help my mother’s medical condition and we decided to move them to a nursing home, where they could both have 24 hour care. And amidst all of my mother’s physical health concerns, she resumed her role as a caregiver to my father.
My mother passed away in 2010. And my father continues to live in the nursing home. His dementia has progressed and he no longer knows who anyone is. He has lost his ability to speak English, his second language and has reverted to his native tongue, which I unfortunately am not fluent. Sometimes, it feels like the staff at the nursing home are his new family. They know what he needs, they feed him, they do his laundry. They take care of him. If it wasn’t for them, he may not be alive. I have given them that role because I have two young children to take care of. But I can’t help but be consumed with feelings of guilt and sadness that I haven’t been able to take care of him the way I took care of my mother when she needed me. I find myself avoiding visits because of this guilt. He doesn’t know who I am. Is this because I don’t visit him often? What must the staff think of me when I go weeks at a time without seeing him? It is always there when I think about him.
I know many believe that putting your loved one in a nursing home is an “easy way out”. There is not the constant exposure to the deterioration of his or her cognitive functioning. There is no emotional pain of seeing him or her suffer. But there is still stress. Feelings of guilt, shame, helplessness. Watching as he or she shifts dependency to complete strangers. Trying to find ways to advocate for him or her and not feeling as if you have the “right” do so because you are not there. It is real. And it hurts. Bad.
Recently, I have joined the crusade of my cousin-in-law, Caron Leid, who has been addressing the phenomena of compassion fatigue and caregiver distress. She has been a caregiver to her mother, who is in the palliative stage of Alzheimer’s, for 18 years. She is an established author ( “Alzheimer’s- What they forget to tell you: A personal journey” – available on Amazon.ca and Chapter’s) and is an international advocate for Alzheimer’s research and awareness. There are exciting new projects on the horizon to provide support to those who spend their time supporting others. And I am very excited to be part of this journey with her. For more information about her work and passion, please visit her website at caronleid.org. Purchase her book and her merchandise, which will soon be available on this website as well. Proceeds of sales go to Alzheimer’s research and outreach.