31 Jan My Story: Dealing with my Mother’s diagnosis
Emma Mckay is a guest blogger for Memory Ball. She joined the Memory Ball team to help raise awareness of Alzheimer’s Disease, and to support her mother who has early-onset Alzheimer’s Disease. She is in her final semester of her Political Science and Communications program at McGill University. She loves sports, being active, and writing. She hopes that sharing her story will help others that are dealing with a diagnosis.
When I was seventeen years old, about a month before my high school graduation, I learned of my fifty-one year old mother’s diagnosis with early-onset Alzheimer’s Disease. Having just finalized my acceptance to McGill University, and being about to embark on an entirely new and amazing chapter of life, learning this news completely changed my life, as well as my entire family’s. It is not that the diagnosis itself came completely out of nowhere; we had been noticing small changes in my mother for a while, but the finality of a diagnosis, especially an irreversible and ultimately terminal disease such as Alzheimer’s, is truly a heart breaking thing to deal with.
One of the most difficult things I grappled with when my mom had first been diagnosed was how to open up to the people close to me about what my family was going through. I had never met anyone else my age whose mother or father had Alzheimer’s Disease, and so, apart from my siblings, I initially felt as though there was no one else around me who would understand. Over the years, opening up to people has become much easier, and I have learned the value and importance in having a loving support group.
Over time, the difficulties in dealing with this diagnosis have shifted, and the hardest part has become witnessing and dealing with the different changes that occur in my mom. One of the scariest parts of this disease is not knowing what is going to change from one day to the next, and having to adjust to these changes, essentially, overnight. It is scarier still knowing that these changes will only become more apparent with time, and, as a result, all the more difficult to deal with.
I think the biggest impact my mother’s diagnosis has had on me lies in my role as a young caregiver. As a teenager at the time of the diagnosis, and now as a young adult, being a caregiver for my mom has completely changed my sibling’s and my role as children. As children, and even young teens, we relied on my parents for absolutely everything. Now my mom is completely reliant on us. I am a student in my final year of university now, and I find it increasingly difficult to be away from home for such a large portion of the year. I know this disease bears the greatest burden on the primary caregiver, who, in this situation, is my Dad, and so I come home as often as I can to help him take care of my mom.
One of the most important things I have learned over the past four years, and something that I think anyone else in a similar situation needs to understand, is that having Alzheimer’s Disease does not mean you cannot live a fulfilling life. My mom remains physically active and socially active, and has developed an incredible passion for drawing which she works at on a daily basis. Most importantly however, she is happy. Sometimes we will be walking down the street together, and she’ll turn to any one of us and say “I’m so happy”. Hearing those words and seeing her smile reminds us all that we are doing the absolute best thing we can do as caregivers in this situation – surrounding her with love. As my Dad said to us at the very beginning of this difficult journey, my mom dedicated her life to taking care of our family, and now it is our turn to do the same for her.