Faces of dementia: Tyler's story
Tyler Redublo is a caregiver for his grandmother Alicia, who lives with dementia. Here, he shares some perspectives on dementia caregiving as a teenage boy and finding community in his 20s around these experiences.
"I’ve been a caregiver—more specifically a young caregiver— for my grandmother Alicia for almost 10 years now. My role as a caregiver started at 15 years old when I was still in high school. My grandmother’s name is Alicia, but my siblings and I called her “Mum,” and she was an extremely important part of our family. She was the primary person to pick my siblings and I up from school or to wait at the bus stop for us so that we could walk home together. She also cooked delicious Filipino food for our entire family and was an avid baker.
One of the first symptoms of dementia that we noticed was when Mum started misplacing things. On one occasion, I remember opening the oven to see if dinner had been prepared, and instead I was surprised to find couch cushions inside. It became clear that something was wrong. Another time, Mum was cooking a chicken recipe she had made for years, that she had perfected—I remember biting into it and it was raw, which was the first time that ever happened.
In terms of my caregiving role, a lot of it involved supporting Mum and my own mother, Judy, who is her primary caregiver. In particular, Mum went to day programs offered by the Alzheimer Society. So, before I left for school, I was helping her to take medications, eat, get dressed, and walk her to the bus. After I came home from school, my siblings and I also made sure that she got back home safely.
Over time, we also learned to use deescalation strategies when Mum became upset. One difficult situation we were often faced with was when Mum thought that our family members were stealing money from her. She would ask me, “Tyler, where did you put my bank card?” And I’d respond saying, “Mum, actually, it’s at the bank right now because we’re getting a new card for you.” Instead of reacting emotionally, doing this helped keep her to stay calm and reassured.
For me, a challenging part of caregiving, especially in high school, was going home and not knowing what sides of Mum I would see that day, or what sort of situations I would face. The uncertainty and progressive decline of Mum’s condition made me feel stressed, sad, angry and isolated. Because of these feelings, I was often uncomfortable to go home, knowing that it would be more difficult to study or focus on work.
"Something I would share with other young caregivers, or caregivers in general, is to try and connect with people who are able to listen and understand. You don’t have to carry the responsibilities by yourself if you don’t want to! So, try your best to stay connected."
In addition, to cope with these feelings, I tried to keep myself as busy as possible. For example, I joined sports teams, did extracurricular activities, and had a parttime job. In a way, those things were like a temporary escape from caregiving, and they helped me tremendously.
"For me, a challenging part of caregiving, especially in high school, was going home and not knowing what sides of Mum I would see that day, or what sort of situations I would face. To cope with these feelings, I tried to keep myself as busy as possible."
My caregiving role also changed my social life, which sometimes created barriers between me and my peers. Throughout high school, especially in the early stages of Mum’s condition, I didn’t want to share my caregiving experiences with anyone outside of my family. A lot of this was due to stigma, and feeling like people could not relate to me and my experiences.
But then, in the last year of high school, I finally built up the courage to tell two of my best friends about Mum and my family’s situation.
I remember the moment very vividly; it was a summer night and we were sitting in a parking lot together. I told them that my grandmother was living with Alzheimer’s and that I was providing care to her, and it felt really liberating—like a huge weight was lifted off my body. However, it was also an important bonding moment for us because they revealed that they were also providing care for their grandparents who were living with dementia as well! It made me realize that dementia affects tons of other people, beyond my own family.
After high school, I went on to university, which is when I started to embrace the young caregiver role more, and I was more open and accepting of it. For example, when people asked me to hang out, sometimes I would tell them, “Sorry, I can’t, I’m helping my family with my grandma tonight.”
Something I would share with other young caregivers, or caregivers in general, is to try and connect with people who are able to listen and understand. You don’t have to carry the responsibilities by yourself if you don’t want to! So, try your best to stay connected. Also, while caring for another person, it can be very easy to neglect your own needs. Self-care is a really important aspect of providing good, consistent care, so make sure to be patient and caring to yourself as well!
What I have found rewarding about caregiving was seeing little glimpses of Mum’s true self. When we would play a song that she knew and she would start singing along, for example. These moments bring up a lot of happy, positive memories and feelings.
If I could provide advice to my past self, I would tell him to be honest and open about his experiences. Also, I would tell him to consider connecting with other people that are like you— young caregivers, who will have useful advice, and similar experiences to relate to.”
Photo: Courtesy of Tyler Redublo and family.