My Story: Dealing with my Mother's diagnosis - Memory Ball
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My Story: Dealing with my Mother’s diagnosis

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.

photo of emma and family

Emma (second from right) and her family

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.

memball emma and mom

Emma and her mother

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.

5 Comments
  • Chris Wynn
    Posted at 21:13h, 31 January

    Hello Emma

    My father was diagnosed when he was 57, I am currently working on a project about young carers, I would like to connect with you about the project, can you message me at

    cawynn@hotmail.com

    thanks

    Chris

  • kathleen
    Posted at 17:16h, 03 February

    I will certainly pass this on to the wallsend family. Its so touching to hear the young one’s being so caring. Love kathleen

  • Pat
    Posted at 15:03h, 05 February

    My heart and love go out to you all. Very happy memories of time spent with your very special Mam, Dad and all of you. Keep safe xxx

  • Clarence Poirier
    Posted at 01:51h, 20 March

    Hi Emma , I recently met with your father and we shared our mutual situation . As Brian and I discussed our similarities , we both acknowledged how important our kids are to us ! I’ve just read your well penned blog and must say that you are not alone The Poirier family is here for you and your family, when you need someone to talk to .

  • donna mcewen
    Posted at 22:54h, 07 April

    Dear Emma, Thanks for sharing your family’s journey in such a beautiful and touching way. No wonder dear Rose is happy. Big hug to you all. Donna and David

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