Caregiving & Loneliness During the Holidays
written by Jesssica Patay
What is it about the holidays that magnifies the loneliness we feel as parents to children with disabilities?
Is it the reality that we can’t participate in more out-of-home traditions like we see our friends or extended family doing?
Is it that flying or driving somewhere far has become impossible?
Is it that we are consumed by medical or behavioral needs that suck up all the Santa fun and Fa-la-la energy right out of us?
Does the Menorah feel like 100 pounds and 8 nights of Hanukah just feel like TOO MUCH to handle right now?
Is it the grief buttons that get pushed merely because it is a holiday season?
Is it that we have to pretend we are coping much better than we are for fear of being a “Debbie Downer” at the proverbial dinner table?
Is it that we are already so taxed with caring, managing, appointments, therapists, crises, sickness, that the HOLIDAY TO DO’s seem to send us over the cliff? And no else understands that we are already buried as a parent, and then we add all the holiday shopping and expectations?
And on that word, EXPECTATIONS, what do we feel from others? Does our family expect us to show up, with bows and bells, and be at everything as if getting out the door wasn’t so damn hard?
Loneliness is defined as “sadness because one has no friends or company.” Or “a subjective, unwelcome feeling of lack or loss of companionship.”
I want to go to the Boat Parade Party.
I want to go to the Cookie Exchange Party.
I want to have Wrapping Parties with friends.
I want to do all the things. And yet, because of the food piece at these events, we can’t go. It is too stressful, AND I am really trying to watch Ryan’s diet.
So I don’t go. And that sure feels lonely.
Historically, we did not do many multi-family get togethers as Ryan got older. I grieve that. Especially during the holidays.
I want to have friends and family over HERE since it is easier to control the kitchen. But I am super tired this season. I just can’t swing it. Maybe you are extremely tired EVERY season because you never sleep through the night. Ever. So having people over feels like a luxury of energy you do not have.
All of this leads to us staying home and alone. With the ones we love dearly yes, who can simultaneously continue to exhaust us.
What to do?
Grieve. Cry. Cuss. Express. Journal. Play loud music and dance.
Smash things in your backyard or garage. (I have yet to try this.) Get the stress and feelings out of your body. Decide not to stuff them down to just feign gratitude and joy during this “happiest time of the year” as the songs tell us.
And let us be so-very-very careful of assuming the highlight reels of Instagram are solid truths in all these other families. No family is perfect and joyful and loving every single minute of every single day. They fight. They cry. The siblings push each other’s buttons. They scream on the way to or from the Christmas tree lot, too. Every family has its own battle. They may not be our battles, and yet, other families DO HAVE CHALLENGES.
Let us have compassion on all of it.
Let us have compassion on ourselves.
I encourage you to say to yourself: It is understandable that I feel sad or lonely or especially burdened during the holidays. It is.
It is.
It is.
