This Canadian Alzheimer’s Awareness month, Kath reflects on how her story has been told in the media and her life with Alzheimer’s.
A few of the interviews I’ve done recently state that I “put my life on hold” to deal with my mom’s diagnosis. I want to address this. That is not exactly how I’d word it, and it is my mistake if I said that/perhaps this was mistakenly implied. I’d say that I prioritised differently when Alzheimer’s joined our immediate family in my early-twenties. Life can’t be put on hold, as I’m sure we all know, things keep rollin’ atchya whether or not you’re prepared and we don’t have the luxury of knowing what/when that’ll be (unless you’re Miss Cleo, RIP).
Of all the emotional chaos and confusion I live with, I am more sure than I am of anything else that the time I spent with my mom is exactly where I should have been. Do I wish it was different? Yup. I wish she never got sick. I wish my entire twenties/my entire life weren’t intertwined with Alzheimer’s and I wish I still took her for granted because I believe I have 40 more years with her, but that isn’t my life. In my experience, mom gets sick when you’re 21 and it impacts how you live day to day because there is a demand for your time and presence in accommodating the obstacles that are unique to this disease. You deal with it and you’re fortunate you have incredibly strong brothers and a family/network of support who define what it means to come together. This is normal to me. This is all that I know. Yes, it affects other parts of my life which I’ve spoken to but it could be much, much worse. I am aware of that. The choices I made and continue to make ultimately lead to putting less time and energy into parts of life that are simply less important to me than the very precious time with my mom. Sometimes it sucks but there was never an alternative to me, it wouldn’t ever have gone differently.
People can feel how they want to feel about this, can say how they’d do it differently or give reasons why I should have. They can view my sharing as a whiny millennial cry for sympathy…none of that holds much weight unless you are me. No one knows what I have experienced, you just know what I share. Just like I don’t know what anyone else truly has or is going through. I won’t give my opinion to you on the choices you make that only affect you, even though it might not align with my own values. If you ask for my thoughts or advice, I will answer to the best of my ability.
In all I share about this illness, I can only speak from my experiences and will continue to do so. What I say will inevitability be totally formed by my own experiences and my perception of yours. It is so important for me to talk about the difficulties I faced and continue to face in living with ambiguous loss and Alzheimer’s disease because I know the comfort and relief found in connecting with someone else who gets it. I have seen that my involvement in Memory Ball, as well as working with other groups and individuals toward Alzheimer’s awareness, have made an impact. For this reason, I continue to share. I am passionate not because it’s the most important cause out there, but because it’s the most important cause to me .