As many of our readers know our owner and contributor, Brian Wilson, moved back up north some time ago. Many never knew why. Brian chose to tell only a few select close friends about what was going on. Such reasons are not only very personal but – something to think about – having to rehash details over and over, on almost a daily basis when you already live this, is mentally and emotionally taxing. In fact, roughly half of our writers here at Central Florida Top 5 (including me) share Brian’s daily life experience as a Caregiver.
How in the world did Humans of New York find Brian? New York’s a BIG place!
According to Brian, here’s what happened;
Heading from Washington Heights to Midtown in New York, Brian was stopped by Brandon Stanton, master storyteller and creator of the inspirational blog and #1 New York Times bestselling book, Humans of New York. Even though he currently lives in New Jersey, Brian considers New York City his neighborhood as he only lives 35 miles from Midtown. Brandon spent about thirty minutes talking with Brian about his story. Brian feels that he is here to help others and is a Caregiver for his mom as she is Caregiver for his dad but what Brian doesn’t realize is, he is a Caregiver for both his parents!
“I’ve moved home to live with my parents while my dad battles esophageal cancer. I think my being home has helped my mom even more than my dad. She had stopped taking care of herself. There’s this feeling of helplessness when someone you love has cancer. Two weeks can pass between appointments, and there’s always this feeling that there’s something more you should be doing. For the past two years, Mom always put Dad first. She lost weight. She stopped doing things she cared about. So I’ve started cooking with her every night. That’s our time together. And I’m pushing her to start crafting again. And to go get her nails done every once in awhile. Last night I stayed home while she went to a Broadway show with her friends. And my dad’s happier too. He doesn’t care how Mom’s nails look, but he’s happier knowing that he’s not stopping her from doing things for herself.”
No matter where I or our writers and contributors go, we always hear one of three things, “How’s Brian?” “Has he moved back to Florida yet?” “I miss Brian so much!” That’s the kind of mark Brian leaves on people; his compassion and willingness to help, fun and playful spirit, his love of community and unending stream of ideas. You love him when you see him and miss him when he’s not around. We miss him terribly here at Top 5 but we know he’s never far. He’s where he needs to be.
On a personal note, Brian asked me to share part of my Caregiver story as part of this post. It’s not something I would normally share in detail, out of respect for my mom’s privacy. (She HATES it when I share about her on social media!) I was, however, allowed to share ONE photo a week for every week she took chemotherapy on my Instagram page, using #Chemo Week #__.
Its purpose, I explained to my mom, was to educate people on treatments and to make cancer a little less scary for others. Through my years of advocacy and volunteerism with local and global organizations, I’ve learned that cancer is brutal, unforgiving, and does not discriminate so why should anyone treat it with kid gloves? Battle for my mom’s life? Let’s do this, Mom. Beast Mode ON.
In honor of Brian, his parents and with my mom’s permission, it’s the least I can do. Like Brian, I love helping others and if someone gleans any sort of usefulness or solace from this, it’s a good day;
That’s my mom, Pam, and I (above) at last year’s Making Strides Against Breast Cancer Walk in Orlando. The proverb, “before you criticize a man, walk a mile in his shoes,” has always been a personal mantra of mine, but has especially rung true in the last two years when my mom was diagnosed for a second time with cancer.
She was first diagnosed on July 1, 2010 with Stage I Uterine cancer. This was the day I stopped capitalizing the word ‘cancer.’ As far as I’m concerned, this disease doesn’t deserve the distinction of being a noun – or verb depending on how it’s used – nor proper capitalization. It’s my way of fighting back.
My mom was diagnosed again on July 26th, 2014 with Breast cancer, a side effect from the medication treating her for Uterine cancer. (Go figure.) And it was bad.
Well after the fact, we learned she had between Stage III and Stage IV Breast cancer. My mom throughout her treatment did not want to be ‘typed.’ She knew her cancer was advanced because she had kept an exterior tumor to herself for (at least) six months, and didn’t couldn’t bear to face that number.
#Chemo Week 56: Two weeks ago my mom had a PowerPort installed to replace the PICC line she’s had for a year. Today is her first time using it and, despite being super scared and having tropophobia, she’s rocking it like a champ. Proud of you, mom!!
The diagnosis of cancer number two itself was already overwhelming. Hearing the words, “You have cancer,” are devastating on their own, and especially to our family. We’ve lost more than half of our family to some form or complication from cancer. My mom has lost both her siblings to cancer, as well as her grandmother, aunt, sister-in-law, and countless other friends. Most recently and in the middle of her battle, my mom lost her other rock, her best friend of 30-plus years, Margie, to Chronic Obstructive Pulmonary Disease (COPD). (As did Star Trek’s Dr. Spock, Leonard Nimoy.) To be the sole surviving member of her immediate family, and to get her own cancer diagnoses was soul shattering.
It’s been a rough few years for our family but good news is on the horizon. Thanks to my mom’s oncologist, whom she randomly met during a hospital stay after she was diagnosed, my mom is doing better. A couple of weeks ago my mom heard The “R” Word for the first time – REMISSION! She’s still taking chemo infusion but only once a month instead of once a week.
In the beginning of this journey, I didn’t know the difference between a PICC line and a Portacath – or what the heck either even were. I was as scared as my mom and even less informed. Thanks to a wonderful oncology team, home care nurses and Dr. Google, I educated myself.
Not a week goes by that I don’t get a private message from a friend or friend of a friend who has received a cancer diagnosis, or has become a Caregiver by proxy. There’s no manual on this stuff just as there’s no manual on understanding your loved one, sick or not. Hopefully these tips will help all Caregivers:
Jen’s Top 5 Caregiver Tips
1) Even if you don’t like it, even if it’s what you do not want to do or what you think is best, LISTEN to your Survivor. What the patient says GOES. (It’ll be frustrating but you must always respect your loved one’s wishes.)
2) Each day will be different as every patient is. Tomorrow is never promised – to any of us. Be ready for it, get some SLEEP. Taking care of you will help you take care of your loved one. Allow some time for yourself. It’s not wrong. [Extended family and friends: Don’t ASK if a patient or Caregiver need help, JUST DO. It will be more appreciated than you know.]
3) Remember, even on your worst day, you are a CareGIVER, not a careTAKER. The simplest of acts; your company, a home cooked dinner, a clean bathroom, fresh laundry or just an afternoon to Netflix and Chill will always be a comfort and treasured memory.
4) Keep a NOTEBOOK handy during doctor’s appointments, chemotherapy infusion, hospital visits, etc. As your loved one’s direct Caregiver, you will become a defacto Junior RN and Specialist of your loved one’s condition. [Think: Dr. House with a pleasant bedside manner.] Know and understand all the fancy doctor speak and keep a list of all medications, special care instructions and known allergies handy. In an emergency, this at-hand info can save precious time. Added Bonus: Feeling (and sounding) super smart!
5) Doctor’s prescription: Enjoy one BIG belly laugh a day. My mom’s oncologist, Dr. Kalpesh Barot of Southwest Cancer Center, actually wrote this prescription on her discharge papers after she was diagnosed. This positive attitude, above any meds, saved her LIFE.