We Are a Community of Caregivers: By Erin Paterson

As I sat down in the plush green chair across from my therapist, I knew we were going to spend much of the day’s session talking about the stresses of being a caregiver. I didn’t want to talk about endless hours I dedicate to my dad’s care, but my frustration that few people in my life understand the amount of effort it takes, both mentally and emotionally. This lack of understanding and acknowledgement has left me feeling extremely angry and alone. I know I am not the only one who feels this way.

Being a caregiver is hard.

Many of us were just thrown into the role. A loved one needed help with something simple, like going to the grocery store, and we stepped in to help. We were happy they had the courage to ask for assistance. But over time we found our roles expanding more and more, until one day we looked up and realized we were responsible for another person’s life. From managing their finances, to purchasing daily supplies like soap and toilet paper, to booking and attending their doctor’s appointments with them, to being the only person who knows their entire medical history. From coordinating the personal support workers to advocating for our loved ones by constantly teaching people about Huntington’s disease, so that medical staff will treat our loved ones with the dignity and respect they deserve. An endless task with the high turnover of staff.

For most of us there is more than one person with Huntington’s disease in our family. A dad, an uncle, an aunt, a brother, a sister, and three cousins. All of those people need to be cared for at some point in their lives. When someone sadly passes away, there is often someone else in the family whose symptoms are progressing. Maybe there is a handful of years where no one needs intense caregiving and we can embrace the moment of calm, but oftentimes there is never a break.

We are a community of caregivers.

To the gene positive caregivers who are taking care of a loved one and have the added pressure of witnessing what their own future will hold: Your gene status adds an extra layer of anxiety and fear to being a caregiver, but it also makes you a damn good one. You know what is going to happen to you, so you make sure to treat your loved ones as you would want to be treated. You model that to your own children because you know they will most likely be your caregivers one day too. That is a hard reality to face. You hope your kids will stick around and care for you in your time of need but also wish they didn’t have to bear that burden.

To the gene negative caregivers who are living with survivor’s guilt, who look at their loved ones suffering with HD and think, Why them and not me?: Even though some people tell you that you are “one of the lucky ones,” it doesn’t feel that way because often your experiences and emotions are dismissed. You may believe you don’t have a right to complain. But you are overwhelmed by the magnitude of the need in your family. You decided to stay and support your loved one, and the emotional burden on you is just as great as it is on anyone else in the community.

To the caregivers whose gene status is unknown, for whom life can be emotionally fraught, with the tasks of caregiving constantly reminding them of their risk: Every trip to the store for supplies, every phone call that comes in, and every decision that needs to be made is a reminder that you might have inherited the gene. Sometimes you second-guess your decision not to get tested and you wonder if it would be easier just to know your status. But despite all of that, you are there helping your loved one through this time of their life.

And finally, to the young caregivers who are navigating all of the monumental decisions that come with being a teen or young adult, who are also going home at the end of the day and taking on the role of being a caregiver for a parent who has HD: You may be helping your parent shower, paying the bills, cooking dinner, and watching out for your siblings. You are living a life that is impossible for your peers to even comprehend, and it can be hard to figure out where you fit in anymore.

To those of you who have stepped up to be caregivers, I see you and all the work you are doing. I understand how hard it is. I know it can feel endless and like you have lost yourself. I know you have a tremendous amount of compassion for your loved one with HD, and you feel guilty complaining about it. But your feelings and emotions are valid. Just because you complain about it sometimes, doesn’t make you a bad caregiver.

You are doing a wonderful job. Your loved one is living a better life because of YOU!

Being a caregiver is the greatest act of love.

By Erin Paterson

Erin Paterson is an author, speaker, and Huntington’s Disease advocate. She founded Lemonade Press, a publishing company focused on empowering from under-represented medical communities by helping them write and share their own journey’s in inspiring anthologies. She has published four books including All Good Things and Huntington's Disease Heroes.