To the Kid Whose Parent Was Just Diagnosed With a Terminal Illness


I know what you’re feeling. At 14, when my dad was diagnosed with amyotrophic lateral sclerosis (ALS), I felt it all: the shock, fear and sadness that comes with a parent’s terminal diagnosis. I wish I could say it’s an easy road, but it’s not. You may see your parent lose abilities that were taken for granted, until they can require assistance for the simplest tasks. No child or teenager should ever have to experience this. Our parents are still meant to be taking care of us, and suddenly it’s the other way around. I don’t mean to scare you with this information. I know you have a lot to take in, so take some time.

Talk about it and come to terms with your feelings. Vent with family, therapists or friends about what is happening and how it affects you. If you are uncomfortable with that, then talk to yourself. Shortly after my dad was diagnosed, I laid in bed and researched his condition, preparing myself for what lay ahead. I thought about all the things my dad would miss and how much he would suffer. This may seem like torture, but having a good cry that night has allowed me to come to terms with what is happening. Every once in a while, when my dad becomes sicker, I sit myself down and think about what has changed. This is sad, but repressing how you feel can just make you feel worse in the end.

Your relationship with your sick parent will change, but not necessarily in a bad way. Rather than going to baseball games with my dad, we now bond over Netflix. We have wheelchair races instead of playing catch, and he teaches me how to make him the meals he always made me. I spend more time with him now, and I feel like this has made me closer to my dad.

Get to know nurses, aides and caregivers. My dad’s home aide is practically a lifesaver, and she has taught me how to handle things my dad experiences. You want to have a good relationship with the person who’s caring for your parent.

You are not alone in this. Not only do you have your whole family going through the same struggles, but there are many people (like me) who have experienced a parent’s illness. Reach out to someone you know or join a support group. The advice of someone who knows what you’re going through can be invaluable.

Spend as much time as you can with your parent. They will need you more than ever, so be there for them. You now have only a short time to make a lifetime of memories, so don’t take anything for granted.

You’ve got a long road ahead of you, but you will be OK.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

TOPICS
, Contributor list
JOIN THE CONVERSATION

Related to ALS (Lou Gehrig's Disease)

When a Friend Asked Me If I Was Mad at My Body Because of My ALS

After my ALS diagnosis was doubly confirmed by the University of California, San Francisco and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else [...]

9 Oscar-Nominated Films That Got Disease and Disability (Mostly) Right

Of the Oscar-winning actors and actresses from 1927 to 2012, 16 percent portrayed a person with a physical disability or mental illness, according to BBC News. But does a compelling performance necessarily mean the film portrayed the disease or disability realistically? The Mighty decided to review some current and past Oscar-winning or nominated films over the last 30 [...]

The Moment a Mom With ALS Gave Her Daughter the Perfect Wedding Gift

Even in the most tragic of situations, beauty exists. Anthony Carbajal, 26, was recently diagnosed with ALS, according to his YouTube description. You may remember him from his moving ALS Ice Bucket Challenge video a few months back. In it, he talks about his own struggle with the disease, as well as his experience taking [...]
man wearing pink bowtie in wheelchair

Man With ALS Has a Different Kind of Challenge for Us to Take

When Chris Rosati was diagnosed with a terminal illness, he decided to dedicate the remainder of his life to inspiring others to be kind. Rosati has ALS (or Lou Gehrig’s disease), the same disease that’s inspired the Ice Bucket Challenge to sweep across social media. Instead of wallowing in his diagnosis, Rosati set up the Big Idea for a [...]