It has almost been 2 months since my mom has passed, I have not even quite processed her passing yet. How can I? Without permission, Alzheimer’s disease barged into my life, moved in and dominated it for twenty years. Two decades, think about that. I was forced to learn about a disease I knew nothing about- and to only find out- not many people knew about it either (I am referring to medical professionals) I had to become an “expert” on the disease- again not by choice, by necessity.
The optics on my journey, is that I had so much support. The truth is, there wasn’t any. Most of my mom’s family that she was close to resides in Trinidad and therefore proximity was an issue. My dad used to say, “when you can no longer do anything for someone, you will see who your real friends are.” I got to see this first hand. Which is why along this journey, I always said my mom and dad were constantly teaching me valuable lessons.
My mom was such a giving, kind person and I am not just saying that because she was my mom. I saw it. Which is why, when she was sick, I knew I had to look after her. It was my duty. I am writing this with tears in my eyes. If you know anything about Alzheimer’s disease- it is a roller coaster ride and no two days are the same.
Fortunately, my mom had paid caregivers and support from personal support workers along the way. There was no way I could have cared for her at home without that. I was the only unpaid person that would sit with her and talk to her and joke around with her. (when she could no longer talk)
I was angry for a long time, I will admit it. When my dad passed in 2001- I immediately became a mother to my mother and I was already a mother. Through researching and writing, I found my catharsis; it saved me. (Along with counselling) When you watch a loved one fade away bit by bit until the end, it is traumatic- there is no other word for it.
Many people romanticize dementia; I don’t- because I know the reality of the disease from beginning to end and even when my mom could speak, there was nothing “great” about it- it was heart-breaking watching my mom- a registred nurse- struggle to remember our birth dates. Or blatantly say – “I can’t remember”, or knowing that she may know you- but you know deep down – she doesn’t know who you are. When she forgot how to speak, and walk. When she was bed-ridden for several years and all you can do is watch and wait.
What people don’t realize, even though she can’t remember me and who she was in my life, I most definately remember her- and I can utlize those memories for both of us. Yes it was hard, gut-wrenching, emotional, draining and heart-breaking and not easy in the least. People tell me that I have surpassed what a daughter would do. Really? That statement saddens me a bit.
So now, when I need to reflect on the last 20 years, there are so many expectations. Can you be on this committee, can you speak at this univesity, can you, can you? Or my favourite, “Now that you have time?” This is the issue when you “appear” strong, people think you have no feelings. I suppose, people think that the vacation I just took (after 10 years) should be enough time.
I am grateful for the people that keep checking on me, and I have had some that have not said a word to me since my mom passed and both are equally great. When you have been intimately involved in someone’s care- and they were a part of your life, you cannot pause and play. (even if you weren’t intimately involved in a person’s care) It’s not back to my regular scheduled program. While my mom was alive, I respected what she would have wanted in terms of family obligations- I felt that was my duty. Now that she is gone, that duty no longer applies. I now have a chance to be unapoligetically me, and that self-discovery is liberating.
So suffice to say, I am still on Pause- I – (not anyone else)- will decide when I hit the play button.