In August 2018, I became a caregiver to my husband, Joe, who was diagnosed at age 47 with stage IIIb rectal cancer. I wish I had caregiver tips and advice at the time. But I didn’t. I was scrambling to get through each day.
Together with our three kids (then ages 15, 13, 11), we navigated the bumpy, icky, murky (and any other gross adjectives – feel free to add here) waters of colorectal cancer through diagnosis, chemo, radiation, surgery, NED declaration, and another surgery over the course of 13 months.
One thing I came through all of this with: No one fights alone. As a caregiver, I was extremely thankful to have a village support me.
Caregiving Isn’t Typically a Choice
Caregiving isn’t a role I would have chosen, given the choice. Cancer is not a disease my husband would have chosen either. We were thrust into these positions, and in the words of Pat Summit, “It is what it is. But it will be what I make it.”
So, we tried to make each day “good.” Some days were harder than others to make “good.”
As a caregiver, I took my responsibility exceptionally seriously. That’s what makes being a caregiver so difficult. Caregivers typically “handle it” with everything. We step up and do what needs to be done. Whatever needs to be done always gets done. Even at the expense of our own physical and mental health.
In a world where everything has spun out of control, caregivers throw ourselves into caregiving with all of the intensity and passion in our souls. But then little is left to take care of ourselves.
Being a caregiver means we learn as we go. We do the best we can each day.
After Joe was diagnosed, I wished there was a list of things I “should” do as a caregiver. I felt like there were things I should have known, but I didn’t. So, here’s a list of my top 7 caregiving tips and advice. These things got me through one of the worst and most difficult years of my life.
1. Plan for What You Can Plan.
I created a binder with a tabs for each doctor (surgeon, oncologist, radiologist) where I would write questions we had as we went along, so I would remember them and ask questions at every appointment.
Don’t think “you’ll remember” everything when it’s time for appointments. You won’t.
I kept a spiral calendar book dedicated to treatment and procedures appointments, so I had everything in one place. I included a page with Joe’s prescription medications, as well as the medications making up his infusions.
Within this binder, Joe’s allergies were listed because with all we had going on, we didn’t need “one more thing.”
2. Don’t Google Anything Related to the Diagnosis.
Your loved one with colorectal cancer is one out of billions of people. Their doctors are on the case, and they are doing everything possible to cure your loved one and save their life. Trust the medical professionals and have faith in them.
While Google has answers, it doesn’t have all the answers. Google also doesn’t have all the specifics of your loved one’s diagnosis and specific particulars.
3. Ask for Time and Patience.
When Joe was diagnosed, it felt like someone smacked us across the backs of our heads with a board. Stunned is the best word to describe our reactions when we were told Joe had a tumor.
I wear my heart on my sleeve, and I am unable to hide or stuff emotions.
When people are “all mysterious and vague” on Facebook, I roll my eyes. I don’t want to be “that person.”
While I craved prayers, good thoughts, and good energy, and I wanted to share that we were going through “something big,” I wasn’t ready to share Joe’s diagnosis with my friends.
Honestly, it took me a good three weeks to tell people Joe had cancer.
A cancer diagnosis is bad enough. But then you throw in the word “rectal,” and it’s gone from bad to worse. If that’s even possible.
I can’t remember how long it took until I was able to say “rectal cancer.” I kept saying “colorectal cancer” at first. As if the word “colorectal” made the cancer “less gross.” Guess what? It didn’t.
For a while, I just said, “Joe has cancer.” Then I got the DMs asking “what kind?”
At that point, I still wasn’t comfortable saying “colorectal” much less “rectal.” I would simply say, “I am not ready to talk about that yet. Just please keep us in our prayers.” (Truly, I believe God knows where the cancer was located, so He didn’t need the specifics if people were praying for Joe.)
It felt incredibly invasive when people would ask, “What kind of cancer?”
To have the power and control in a situation – where I had no power and control –where I could just say, “I need time to get to that” was a gift.
4. Ask for Help.
So many people reached out when Joe was diagnosed. They asked, “How can I help?” I had no idea what I needed. “Prayers and positive thoughts” was my answer early on.
I knew Joe would need surgery down the line, and I held that “ask for help” card close to my heart.
One fear was that people would get sick of me asking for things. As a result, I waited until Joe’s surgery (a full 10 months later) and asked for help then – A LOT of help.
“Can you come to my house the day of Joe’s surgery (we arrived at the hospital at 5:30am), so that my kids don’t come home to an empty house?” Or “Can you help organize meals when Joe has his surgery? Just a few a week and just for a couple weeks. I don’t want people to be sick of us.”
Whether you need rides to help transport your kids or food on the table because you are too overwhelmed to shop, prep, and cook, people really do want to help you in any way they can. People want to be your village. They want to lighten your load.
Let them.
The nature of caregivers is that you have probably already paid this help forward to others in the past. Or you will in the future.
People helping each other out when they need it is part of what makes the world go round.
5. Ask the Medical Professionals.
I would grab scraps of paper and write down questions that came to me randomly during different times of day or night. At 8pm the night of Joe’s diagnosis, I my oncology nurse friend a DM that started, “Joe was diagnosed with rectal cancer today. Excuse my TMI. I don’t know where to start.”
She was the only person I was able to say that to the first days of diagnosis. Her “where you go matters,” response still hits me in the feels.
There was a part of me that flashed “close and convenient” ever so briefly. But in matters of the heart and health, we choose “the best.”
Find the best hands possible to treat your loved one.
7. Know That “This, Too, Shall Pass.”
Every day is not going to be as awful as what you are going through at this moment.
Keep the faith.
Stay positive.
When Joe was diagnosed, we began watching a new TV series and the doctor said, “It’s a good news kind of day!” I totally stole his line and I planned a “pallet party.”
This pallet party turned out to be one of my ways of self-care. I gathered with friends to paint. Cancer wasn’t the center of my universe for a few hours. It was glorious!
My custom pallet says, “It’s a good news kind of day!” I hung it in my kitchen for my daily reminder when I sit down to drink my coffee each day that for today, we were OK because we were sitting at the table having breakfast together.
For that reason alone, each day is a “Good news kind of day!”
Caregiving is the ultimate act of giving for those we love.
But caregivers also need to take time to care for yourselves. When you care for yourself, you know it’s going to be a “Good news kind of day.” Because you make it one.
