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Content note: This story contains personal experiences of depression, self-harm and suicidal thoughts, which some readers may find distressing.
If I had to describe my teenage years using one or two words I would sum it up by saying “being a caregiver”.
I first began taking care of my mom when I was a socially awkward 14 year old. I didn’t know how to fully take care of myself so having to start taking care of someone else was daunting. I had always been told I was mature for my age but I think that’s because I was told at a young age what Huntington’s Disease was and that my mom had it. I quickly learnt that my brother and I were not to stress my mom out as it could speed up the progression of the disease. I googled what HD was and at the time I remember reading things like how there was no cure and that it is commonly described as having ALS, Alzheimer's and Parkinson's in one horrific disease. Hearing news like that I think would cause a lot of people to “mature beyond their years”. My childhood worriless demeanor turned into constantly worrying about my mom which manifested into severe separation anxiety and a caregiver mentality.
My mom’s progression first began slowly with the occasional movements in her hands and feet. I remember as a little girl finding this comforting when my mom would hold my hand because her thumb was always rubbing the back of my hand in what I thought was a reassuring manner. She would forget the occasional thing like that she had already asked me how my day was or where she put something down. I didn’t find these symptoms alarming at the time because I was still receiving the warm comfort of my mom cuddling up with me and telling me everything was going to be okay when the worries began to creep in of what her future would look like.
Everything changed at that 14 year mark of my life. The comfort I used to look for from my mom was now replaced with emotional outbursts & emotional abuse. She began nitpicking every little thing that I did and was in a constant state of anger with me. I could do nothing right in her eyes but this was also the time when I first began caregiving for her. It was hard balancing assisting her with brushing her hair, putting on deodorant and getting ready for the day with the feeling of walking on eggshells around her. Being a young teenage girl, I also was prone to reacting to my mom in anger which meant that we would both egg each other on to become madder and madder. It was not a great combination at the time and I remember my brother and father telling me to “just walk away Hannah”. I tried their advice once but it ended up in a bigger blowout than usual with me crying on the bathroom floor with the door locked and my mom attempting to break in with a knife. This will forever be a memory seared into my brain and I can still imagine my brother calming her down outside the door. Thankfully soon after we were able to get my mother on better medications for her outbursts but she turned numb and robot-like in her responses when chatting.
My mental health also took a bad decline during this time period and it was when I first began taking antidepressants. My parents had thankfully always seen the benefit in therapy and also were quick to get me in to see a local mental health worker. I don’t remember much from when I was 14 other than the start of my family's HD journey and the toll it took on me personally.
Over the next couple of years, I juggled my mom’s progression and ever growing needs while going to school and having a part time job. My mom could no longer drive safely or be in charge of cooking because it became too dangerous and was in need of assistance with bathing/showering. She became a shell of the woman that I once knew and looked to for guidance. I gave up on going to her when things got tough because her response had become “are you on your period” with no follow up questions or supportive comments. I was still trying to engage her in social conversations and group discussions but she had no interest in speaking, she would just sit there and listen with a blank look on her face. The mom that I had once known to light up any room she walked into with her bright smile and bubbly personality had vacated her body and mind.
Fast forward to my final year of high school, I had severe caregiver burnout and suffered a major depressive episode accompanied by suicidal ideation. I don’t remember when I first started feeling myself go numb from the pain of constant sadness but it seemed to come in waves that appeared every night after a long day of masking my emotions. This was when I first began harming myself to feel anything or to release some of my bottled up emotions. My suicidal ideation would go hand in hand with the thoughts of self harm. I felt like my life at this point had no meaning outside of being a caregiver to my mom and a rock to my family. I felt useless if I wasn’t doing something for someone else and unworthy of love and support. This all came to a head when I was in the process of switching my antidepressants. For anyone that doesn’t know what that process looks like, it usually begins by slowly decreasing the dose of the medication you are currently on before starting the new one. I remember one day meeting with my school social worker at lunch and telling her I was doing good but then later driving home and not remembering how I had gotten home and pulled into my driveway. I broke down like a shattered little girl and immediately called my social worker saying that I couldn’t do this anymore and no longer wanted to live.
I was admitted two days later in an adolescent mental health facility. The thing I struggled with the most during my time there was not that I was having a hard time but that I wasn’t allowed my phone and couldn’t contact my family if they needed me at any time. The silence was deafening and I tried to fill my time with reading and meeting with the mental health workers / psychologist who diagnosed me with major depression and suicidal ideation. During my stay, I learned the hard way that I could no longer do everything on my own and needed assistance with all of the caregiving. When I got home, my family and I sat down and got homecare put into place to assist my mom while I was at school with things like meals and showering her once a week.
Now as a 23 year old woman, I am in a much better space both physically and mentally. My mom lives in a care home that provides her with 24/7 care and fun activities that help stimulate her brain. I have made the decision after graduating high school 5 years ago to finally attend University for my post-secondary education. I am hoping to become a teacher as it is something I’ve learned that I love and am passionate about. I also now have a much better support system, more resources and more emotional capacity and time to do things for myself. It took me years of therapy to learn that it is okay to have a personality outside of being a caregiver, that I am allowed to enjoy life and am worthy of taking up space even if I’m not doing something for someone else. I attend therapy on a regular basis to digest all of my different emotions while working through my childhood trauma of everything I’ve gone through and managing the new emotions that come up while my mom is still progressing into the later stages of this disease. I am thankful for the wonderful Huntington’s community that I’ve built for myself and am giving back by being the current president of YPAHD (Young People Affected by Huntington’s Disease).
I share my story in the hopes of letting other people know that they are not alone. You are allowed to feel your emotions instead of bottling them up and it is okay to ask for help. Everyone who loves you would much rather help you than the potential of you burning out and no longer being here if you struggle with suicidal ideation. You are worthy of everything good in this life and you are allowed to be someone outside of caregiving. HD does not have to be your whole world, take it from someone who had to learn the hard way. I am so glad that you are here and reading this. Wishing you all the best in your journey.
With love,
Hannah Remillard.