If I could offer advice to the young wife who held her husband’s hand when we first heard “You have cancer,
”I would say the following:
Dear Caregiver Emerging,
HAVE YOUR FEELINGS
You don’t have to hold it all together. Take a moment to have the full spectrum of all your feelings. Let it out. Make a plan. And then repeat. Daily.
FIND A MENTOR
Seek out someone who has done this before, even if it’s that woman sitting in the oncologist’s office waiting for her loved one to finish treatment. She has a story to tell. She may give you a nugget of advice that gets you through the worst days to come. You are now part of a community. Your path will be your own, but human connection is universal.
YOU’LL NEED YOUR FRIENDS
Survey the landscape of your friendships.Decide who might come on board to help and support you. Know that some people in your life today will fall by the wayside, while others will rise up to meet you.
BUILD YOUR TEAM
Ideally, you want a mix of people who can support you in different ways. Some folks are sprinters, others are distance runners. Some people you will call to take your mind off the painful realities to come, others you will call to share the burden that is on your mind. Everyone has a skill (organizing, cooking, making you laugh, financial know-how), but not everyone will be able to help all time, so be prepared to spread the support around. Create a caregiving community for yourself.
ASK FOR HELP AND GET COMFORTABLE DELEGATING
Your days as a stoic solo flyer are done, even if it will take you a long time (years! for crying out loud) to admit it. You are gonna have to get comfortable letting others in and asking for what you need. This will make you stronger and ultimately more at ease supporting the person you love so much.
REMEMBER NO REQUEST IS TOO SMALL
Yes, that means it is okay to ask someone to walk the dogs; pick up a prescription; get the mail from the PO Box; or take your car to get washed. Coming home from chemo involves nausea, you will need your car washed, ASAP.
RESPITE IS VITAL
They tell new mothers to sleep when the baby sleeps. The same should be true for a person holding up the care and emotional well being of a cancer patient undergoing treatment. The laundry will wait, your physical and emotional reserves might not. Burn out is real. You’ll know this when the sight of hummingbirds no longer makes you smile and a squirrel eating the last peach on your tree makes you go unexpectedly turbo.
You will be awful about taking vitamins. However, nutrition for caregivers is just as important as nutrition for patients. A Vitamin D supplement will become your friend. It will help with feeling blue, foster mental acuity, and do all that other stuff your doctor says is important. Listen and do it!
CREATE A CALMING RITUAL
You’ve never been good at sitting still for long and your idea of calming down is taking a long run in the park. You can still do that, but you will need new kinds of calming skills. Explore deep breathing, try meditation. But mostly, give in to the desire to still daydream. Let your heart make wishful, expansive plans for the future. The ability to daydream will keep you company through the roughest moments to come. That vision of a brighter tomorrow will keep you sane.
KEEP A CAREGIVER’S TOTE
Now is the time to embrace your inner High Priestess of the Fabulous Handbag. Treat yourself. Get a bag you love, can afford, and one that makes you happy. Fill it with goodies needed to refuel, replenish and feed your soul. Carry it with you like Linus carries his blanket. You will reach into it at the ER; pull a scarf from it when your husband’s bald head is cold waiting on line at TSA. The bag will carry scripts, later pacifiers and baby bottles. And, in a forgotten inner pocket, it will carry a prayer card written in a foreign language and given to you by a stranger on a street corner, just because he thought you needed it.
KEEP A JOURNAL
You’ll be glad you have a sacred space just for you to muse, vent, rail and unleash. Write all the curse words you can’t say to the general public. Write them in ALL CAPS. You will go through at least twenty of these books in ten years. You will write “Gratitude” on the cover of many of them. Somedays you’ll smirk at that word, other days it will be a lifeline. Later, those journals will form a road map reminding you of the path you took to become the kind of woman, mother, wife, human being you are today.
AVOID “WHAT IF” ANXIETY
Life with cancer is full of “what ifs”. Since you are an optimist with pessimistic tendencies, you will tend to play out the worst imagined scenarios. You will tend to skip past all the good that is also happening in favor of the dramatic doom. Try to flip the script. For every negative “what if”, balance it with a corresponding best case “what if” scenario. As your good friend Julie will tell you, if you’re gonna make up something that hasn’t happened, at least make what hasn’t happened, a positive story.
DON’T WORRY ABOUT THE EXTRA TEN POUNDS
Stress, caregiving and little time for your own care will change your body. Don’t worry. Settle for a good haircut, a flattering scarf and maybe a manicure. Know that a time will come when you have more time to take care of yourself. Do what you can for now. Staying healthy is more important than a fabulous physique. And for god sakes, woman, your career as an actress is not over because you go up a jeans size.
LET OTHERS TAKE THE WHEEL
As a teen, you had to learn to change the oil and fix a flat tire before you could get a driver’s license. You were raised to “do it all”. Yet what you are about to learn is that the best human connections come from sharing the journey and letting others step in. Doing it all yourself will burn you out. It will rob you of one of the greatest lessons in illness – that we are all interconnected and waiting for a moment to express that connectivity.
ACCEPT THIS MOMENT IN YOUR LIFE
You will spend many moments comparing your life with the lives of others. Those who are not walking a path that includes illness, threat of loss and financial burdens. People will have children, get promotions, upgrade homes, travel to far away places. You will feel the sting of jealousy and those feelings will make you more depressed. But there will be moments, glorious moments when you accept, even embrace, your life and ALL that it is. The tension will ease. You will see what illness has taken away, but you will also see what it has given. You will appreciate it as an experience richer and fuller than you have previously known. Mostly, you will know the closeness and abiding love that can grow between two people. An inner strength will be yours.