Lately I’ve had this recurring dream. I’m stranded on a secluded island and spend the bulk of each day frantically waving my arms toward the sky hoping that someone may notice me and send help.
It’s been said that our dreams are often rooted in reality. Well, in my case, the secluded island likely translates to feeling isolated within my home as a lifelong parent caregiver who never gets a break.
For the last 3.5 months, my husband and I have provided 24/7 care for our 22-year-old son Skyler, who has profound, nonverbal autism & Crohn’s disease, because he ‘aged out’ of traditional services and there’s nowhere for him to go for even an hour a day without one of us at his side.
Every day is the same tag team routine … morning shower, dress, feed, Elmo’s World, neighborhood walk, feed again, more Elmo’s World, S2C lesson (if he’s feeling agreeable to sitting), feed again, evening shower and eventually bed. Sprinkle in multiple daily car rides to nowhere in particular to pass time, 15-20 pull-up changes, lots of urine-soaked laundry and us somehow managing to tackle the tasks of our full-time jobs… and that should provide a fairly clear picture of our daily life.
Throughout this ‘Groundhog Day’ process, Skyler repeatedly slaps, shoves & grabs us, forcefully bangs on everything he sees, slams doors and swipes or throws to the floor the few remaining items that I haven’t yet packed away.
While his constant, loud aggression challenges my nerves & patience, I can see in Skyler’s eyes that he’s angry, bored and frustrated. This sheltered environment is wreaking havoc on our mental health.
I can’t imagine what it feels like to have no programs or activities to attend, no friends to hang out with and be forced to rely on your parents to accurately decipher your unspoken needs, wants and dreams through only physical communication.
So yes, our move to Colorado (7 weeks and counting!) will be extremely beneficial for Skyler, but it will also give us, his lifelong caregivers, a reset too.
We want Skyler to have a future full of opportunities to experience new things, to develop more independence and enjoy his adult life. And we want to be able to prioritize our marriage, rediscover things that bring us joy (like being able to finally say ‘yes’ to an invitation for a night out) and rest easier knowing that our son is happy & thriving.
I remain hopeful that the programs I’ve identified for Skyler, which will simultaneously provide the respite we so desperately need, can relieve some of the angst we are all feeling and help us all have a reason to smile again.
Sadly, our parent caregiver story is not unique. I know many of you are as overwhelmed and exhausted as us – unable to clock out of this lifelong role for even a shower most days.
However, after 22 years, I know now that it’s healthier to express your feelings (yes, even the negative ones) rather than tell the world “I’m fine” and pretend you’ve got things all figured out. So, please find an outlet to frequently share the good, bad and ugly with anyone who’ll listen!! Oh, and if you find yourself also dreaming about being stranded on an island, chalk it up as a win that you actually got some sleep!
This journey is unbelievably tough, but it presents those of us who live it with a deeper understanding of unconditional love and resilience… and for that I am truly grateful.
