It happened so suddenly and out of nowhere. I was a perfectly healthy 29 year old poised to enter motherhood. In an instant, we had the immense joy of becoming parents and yet found ourselves tethered to an impossible place – the hospital’s neonatal intensive care unit.
We spent 4.5 long months in the hospital three short years ago when my son was born. I’ll give you the short version: thank god, everything turned out well. But during those 4.5 months, we became warriors, advocating and caring for our son as he fought for his health and his strength.
When I look back, and I rarely ever do, I think that the uncertainty is the hardest part of the patient journey. Navigating the healthcare system and being in a perpetual state of crisis with no clear end in sight. When you are running a marathon with no markers, you don’t know whether to reserve your strength or push yourself to the limit.
There are no milestones, no grades, no bonuses, no clear indications of how you are doing.
You see, being a caregiver to someone struggling with health issues, whether it’s to your parents, grandparents, children, friends or family, is the most important work you will ever do in your life. I’ll repeat that: the most important work you will ever do.
But it will also push you to the very edge of who you are as a human being. I wandered on that edge a few times myself during that time living in the hospital. But I found solace in our community, our friends, and our family.
From our vast experience as what I call “professional patients”, I have a few tips with “Do’s and Don’ts” for others supporting families facing health issues.
We were lucky to be able to rely on our community, and I found that the best support during that time was from what I call gladiators and cheerleaders.
Let’s start with the Don’ts
Silence is golden. Try not to be a space-filler. Space-fillers are people who try to fill the silence. They fill the silence with stories from their own experiences. Or with stories they heard and think will relate to your patient journey. The stories begin like this “Well, my mother’s hairdresser’s cousin faced the same thing and did X, Y, and Z” or “When this happened to my grandmother, she did this.”
Everyone’s story is different and hearing about other similar (or dissimilar) situations rarely provides comfort. If you find yourself opening your mouth about to share such a story, try to refrain. Silence is golden. Often people tend to try to make sense of an uncertain situation with justifications like “God gives everyone only what they can handle.” Seriously, silence is golden.
Lend an ear. Don’t try to solve every problem. It’s natural to want to give suggestions and advice to try to help, but often patients and their caregivers are too overwhelmed to really listen. I was often offered unwarranted suggestions like “if you add this to your diet” or “if you avoid this food entirely” or “if you talk to this person”.
Not all problems have easy fixes. In a normal situation, problem solving can be helpful. But in one with a lot of uncertainty and chaos, problem solving (from outside the immediate family and medical team) is rarely effective.
Focused questions are better than overarching ones. Patients and their families are frequently asked overarching, existential questions like “how are you doing?” or “how can I help?” Well-intentioned but often too unspecific and broad to be helpful.
When the mind is overwhelmed and suffering from decision fatigue the last thing you want to do is be reminded of your current situation or run through a laundry list of outstanding tasks and decide which ones to outsource. Ask smaller, pointed questions like “How are you feeling today?”
Now for the Do’s
Be a gladiator. A gladiator is someone who accomplishes tasks and does bidding without questions. Take one specific task off your plate – dinner, laundry, a car ride, a phone call. Someone who you can rely on to get something done without having to worry or making it more complicated.
Instead of asking, how can I be helpful?, gladiators ask micro-questions about defined tasks within a short time-frame. Like “have you eaten lunch today?” or “can I bring it to you?” or “can I pick up your older son and drive him home from school on Tuesdays along with my children?” Ask yes-or-no questions about specific tasks that you think can be helpful within a certain time-frame.
And if you can’t be a gladiator, be a cheerleader. Cheerleaders are people who can’t actually help with tasks but can with emotional support. When someone says you are doing great and just cheerleads along the sidelines, regardless of whether you feel like you really are, it can really make a difference. You could just say, “You are doing such a great job or this seems like such a challenging situation, but if anyone can handle it, it’s you.”
So, if you ever find your friend or family member facing a crisis, ask yourself should I be a cheerleader or a gladiator? If you want to be a cheerleader, be the best cheerleader a friend could ask for, and if you want to be a gladiator, think what specific task you could take off this person’s plate. Because we all need cheerleaders and gladiators to keep us motivated to keep going and perform our best in the marathon of life.