31 Narrative Ethnography

In August 2017, my grandmother was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s Disease. This is a nervous system disease that weakens muscles and impacts physical function. In the disease, nerve cells break down, which reduces functionality in the muscles they supply. The cause is unknown and there is no cure. I interviewed my mom for this assignment since she was a caregiver for my grandmother who had ALS. Along with two other caregivers, my grandfather and my mother were there to take care of my grandma whenever possible. As my grandmother’s disease progressed, my mom took at least two to three days off of work a week to stay home with her and make sure she received the care she needed for the last two years my grandmother lived with ALS.

My mom shared with me that when it became time for her to step up and care for her mother she took on the role of becoming her caregiver because part of her felt obligated as the oldest child and the only daughter in her family. The other part of her wanted to spend as much time as possible with her because she didn’t know how much time was left. With choosing to take care of my grandmother my mom had a very hard time with this role. She is currently the CEO of a company and she said taking care of my grandma was hands down ten times harder than her current job. My mom mentioned that she had felt prepared to take care of her mother since there was a lot of time before my grandma lost mobility and my mom was able to do lots of research. With this being said, she was not prepared for the mental and emotional impact it would have on herself.

Taking on this role took a large toll on my mom’s mood and mental health and oftentimes she would come home and go straight to bed without talking to my younger sister, dad, and myself. My mom found herself to be easily irritated and often feeling down and depressed. My mom has a previous history of being diagnosed with anxiety and depression and she said she felt that taking care of her mother definitely made it more apparent in her everyday life. During this time I could tell my mom wasn’t quite feeling like herself. She was often very tired and wanted to lay in bed all day long on the days she wasn’t with my grandma.

My mom told me that her whole perspective of health care had changed when my grandma was diagnosed and as her disease progressed. She was opened up to a whole new world of the disease she didn’t know anything about. She was introduced to the amount of support there was in the health care system and all of the different organizations and doctors that worked with my grandma to make her as comfortable as possible. With all of the support she had seen in the health care system, she said that as a caregiver she was disappointed in the system. As my grandma’s health worsened, my family looked into a wide variety of caregiving companies and my mom had found that with these companies only a fraction of what we pay actually goes to the person who would be taking care of my grandma. My mom found this very disheartening because of how hard of a job it was.

My family was fortunate enough to afford a private caregiver that worked alongside my grandpa and mom. With having hired help for my grandma my mom said she was in it until the end. No matter what my mom would be there to help my grandma until the disease had won. My mom told me that when first stepping in to take care of her mother it was very hard and uncomfortable, but she found ways to still enjoy spending time with her. No matter how hard the job was, my mom said she would never let my grandma know because her comfort and happiness was always the main priority.

My mom was always consciously finding ways to avoid burnout while taking care of my grandma. She would plan out her weeks to build her schedule so she was always prepared. She said burnout was always at her fingertips but never really happened because she was prepared. She said it was the most draining work of her life, but if she could do it all over again she would.