Resources for Parents
Is anyone here a caregiver for a child, teen or other loved one with narcolepsy? How do you manage taking care of someone with narcolepsy? Are there any tips you would give to the community about caregiving for others with narcolepsy?
My daughter was diagnosed at 17 in Dec 2021 with N1 (luckily her cataplexy is very mind and controlled well with an antidepressant). She had been showing symptoms for a long time before that, but it was always shrugged off as “normal teenage tiredness” until it wasn’t.
I won’t lie, it has been anything but a cakewalk. But one thing I’ve learned through the process is to be patient and forgiving. She’s currently in college and we’ve found that for the most part if I buzz her phone at the same time each morning, she is able to wake up enough to take her meds. I’ve also just learned (and mourned) that she isn’t the person she was before. And it sucks. I miss that person desperately and I still see glimpses of the over-scheduled, straight A student she used to be. But those days are few and far between and I know having a good day like that will probably cost her 2-3 days of sleeping 15-20 hours a day.
We are still struggling to find the right combo of meds. Her initial neurologist retired last year and we haven’t found her new one to be very knowledgeable of sleep disorders. One thing I have learned is Knowledge is Power. Read whatever you can find (the books previously suggested are fantastic), listen to podcasts (Project Sleep’s are great!), and educate yourself as much as you can to be that support for them. She and I have also advocated anywhere we can - support narcolepsy awareness days, she did a 4H project on narcolepsy that went to our state fair, and she also used it as her platform in a local festival pageant to raise awareness.
But my #1 piece of advice is to give both of you a little grace. It’s difficult to be at any place around the narcolepsy table - patient or caregiver.
Hugs to you!!!
Hi
. Thank goodness she has you for support. It must be hard to witness what your daughter is going through, especially when she is away from home and entrenched in school. But it takes a strong and brave mom to give her the independence she needs. How awesome that you work together to raise awareness. You must make a good team. I hope she has a successful semester and that you eventually find a doctor who is experienced and knowledgeable enough to truly help her. Thanks for sharing such wonderful and heartfelt advices. Warmest of wishes. - Lori (Team Member)
Hi
!
Though I am not a parent, I have met many parents who have children with narcolepsy. I would suggest reading "Waking Mathilda" by Claire Crisp and "Wide Awake and Dreaming" by Julie Flygaire. As a person with narcolepsy, my biggest suggestion is to love them and support them in whatever way they need. As a 26 year old full-time teacher, I had to ask my mom plenty of times to come over to help me with chores or meal prepping. She is very understanding if I have a bad attitude one day due to lack of good rest.
There is also an article thatpublished regarding this topic. I will post that below.
Best of luck to you and your loved one with narcolepsy!
Xoxo/Zzz, Gabrielle
https://narcolepsy.sleep-disorders.net/living/tips-parents
