Life as a Cancer Caregiver
The to-do list that has helped me with my husband’s cancer diagnosis, my caregiver duties, and self-care.
In March 2018, I became a cancer caregiver when my husband was diagnosed with stage 4 colorectal cancer that metastasized to his right lung.
While numbing and overwhelming, this cancer diagnosis was a wake up call. I shifted gears and began to write a to-do list for my husband and for myself as a new caregiver in the world of cancer.
Self-care is a big part of cancer caregiving. An unhealthy caregiver is good to no one.
These 12 items on my to-do list have helped us to cope with the diagnosis and to keep me strong in my new role as caregiver for the two of us.
I am a positive person by nature. There are many ways to stay positive after getting a cancer diagnosis.
A positive thinking caregiver will help their spouse/partner to stay positive in their difficult and challenging new journey.
Update Health Insurance Coverage
My husband’s cancer diagnosis could not have come at a worse time. His insurance through his employer was set to expire March 31. His employer was no longer paying for health insurance. He was diagnosed on March 6.
We had to scramble for new health insurance on the healthcare marketplace.
Finding insurance that covered my husband’s new GI doctor, surgeons, pulmonologist, oncologist, radiation oncologist, and the astronomical cost of cancer care was extremely stressful.
We were both ignorant of the enormous cost of cancer care. But I quickly learned.
I picked up an issue of Cancer Care Today in the waiting room. The article, The Cost of Treatment, left me numb. This is our future, our new normal.
The high cost of health insurance premiums. The deductibles. The co-pays. Insurance doesn’t pay for everything.
Be a Patient Advocate
I’ll advocate for those in need. I was once a patient. I endured a life-threatening surgical and medical nightmare and was hospitalized a collective 26 days. My husband was my advocate and caregiver 24/7.
Now, I’m his caregiver and patient advocate. The shock of having cancer is too much for anyone to bear alone.
My role as a patient advocate is to get information, write down information, clarify options, communicate with doctors, etc.
Prepare Advance Directive/Living Will
At the time of his diagnosis, my husband did not have an advanced directive. We sat down with my advanced directive as a template. He prepared his and got it notarized.
“Do you have an advance directive/living will?” is the second question he’s asked at his appointments and hospital admissions.
Preparing the advance directive, making his medical care wishes, etc. known, and tucking it away was a welcomed relief for both of us.
Every state has advance directive templates. You can easily access them here. You do not need a lawyer.
Help Prepare the Last Will & Testament
There is no time like the present or the shock of a cancer diagnosis to whip that last will and testament into shape, or to update it.
This website has last will & testament instructions for every state. You do not need a lawyer.
This legal document is important and should include all bank account numbers, credit card numbers, mortgage information, life insurance information, retirement accounts, other accounts, email and social media passwords, and the individual’s wishes.
The cancer patient’s spouse/partner needs to have this information.
Be the Appointment Secretary
My husband refers to me as his press secretary.
I make the doctor appointments with the oncologist, radiation oncologist, pulmonologist, GI surgeon, lung surgeon, physician assistant, nurse practitioner, and all medical and healthcare personnel involved in my husband’s cancer care.
I make the CT scan, MRI, PET scan, blood work, and related appointments.
I deal with the hospital and insurance bills. I handle communications and emails on the hospital patient portal.
This is an overwhelming process for my husband. I take the responsibility to assist. I am the contact person but we make decisions together. At times, it’s overwhelming for me, too.
Keep a Binder
I have old three-ring binders from my teaching and research days.
I repurpose them to organize all of his appointments, tests, results, insurance letters, medical bills, prescription receipts, etc. I keep hospital parking and toll receipts.
This helps us to keep track of everything in an organized manner, and to itemize all cancer care expenses come tax time.
Help Your Spouse/Partner Stay Physically Strong
My husband and I are physically active people. Before his diagnosis, he paced me at 100 mile and 24 hour ultramarathons.
Through out his diagnosis, subsequent radiation and chemo treatments, and surgeries he has remained physically active. He joins me on short and long training runs on his ElliptiGo bike when he can.
We hike in the national parks. While he was on chemo, we hiked in Cuyahoga Valley National Park, albeit, a bit slower.
Research shows that physical activity is beneficial during cancer care.
My husband has continued to work since the day he was diagnosed.
Help Your Spouse/Partner Stay Emotionally and Spiritually Strong
One of the first things I did after my husband got his diagnosis was to print a copy of one of my favorite prayers in times of difficulty. It hangs on the refrigerator door.
Do not look forward to what may happen tomorrow. The same Everlasting Father, who takes care of you today, will take care of you tomorrow. He will either shield you from suffering, or give you unfailing strength to bear it. Be at peace then, and put aside all anxious thoughts and imaginations. ~ St. Francis de Sales
Every patient and caregiver will cope differently whether it’s through prayer, meditation, being in nature, or surrounded by loved ones.
A study suggests that cancer patients with strong religious or spiritual beliefs report better health.
Letting friends and family know about the diagnosis when the patient is ready, and asking them to keep the patient and the caregiver in their prayers and thoughts brings great comfort to both.
An emotionally and spiritually strong caregiver will help the patient stay strong.
Take Care of the Caregiver
Learning that your spouse/partner has cancer is traumatic. You worry about them, what they are going through, and how they are coping.
To take care of our loved one, we wear many hats. Sometimes caregivers get lost in the shuffle. We neglect or forget to take care of ourselves.
Cancer caregivers need to take care of themselves, too.
We need to self-care in order to be physically, mentally, and emotionally there for the cancer patient.
Maintaining good physical, mental, and emotional health is important.
To keep myself physically and mentally strong, I continue to train and run ultramarathons. Running keeps me strong.
And in my running I offer up the suffering, that comes with running grueling ultramarathons, for my husband’s healing.
When I garden, I meditate, contemplate, and pray. I find respite in my vegetable and flower gardens. Here is where I wash my worries away.
I do the things I love to do. I knit. I rock climb. I hike.
I blog on my website. I interview writers and ultrarunners. I write book reviews. I write as an independent scholar and a freelance writer.
I journal about a lot of things including the ups and downs of cancer caregiving. I journal about my hopes, concerns, frustrations, joys, and all of my blessings.
Somehow I manage to end my journal entries on a positive note.
Don’t give up doing what you enjoy.
Join A Support Group
Sometimes the caregiver is made to feel invisible by friends, family, and the patient’s medical team.
Unless they have experience with caregiving or experience with the illness or disease, it’s not uncommon for family and friends to distance themselves from the cancer patient and the caregiver.
Being a caregiver can be lonely and isolating.
I joined a well spouse support group. I have been attending the monthly meetings a year now. I look forward to the respite I find with fellow caregivers.
Support groups provide a caring and empathetic space to cry, laugh, and vent with without judgment.
We share our caregiving trials and tribulations with open arms.
We offer each other new ways of doing things and new perspectives that nourish us and help us with our caregiving challenges.
We share our stories of fear, sadness, and hope. We are sounding boards. We feed off each other.
I feel reinvigorated and my spirits are lifted at the end of our time together.
To find a well spouse support group near you, visit the Well Spouse Association website.
Seek Professional Help
Not only do caregivers have to advocate for the patients, but it’s important that they advocate for themselves, too.
Living with cancer changes the dynamics of the loving relationship between husband and wife, between partners.
Sometimes professional help is needed to keep the caregiver from falling apart while trying to keep it together.
Over a year after my husband was diagnosed, I finally found a place for me in the hospital.
While exploring every wing of the massive hospital and cancer treatment center (our second home) during his surgeries, I discovered the cancer center’s office of patient and family services. No one ever told us about this office.
I am glad I like to explore. Had I not, I would not have known that this service provides 8 free one-hour counseling sessions for each patient, caregiver, and family. If any need to continue, insurance or self-pay take over.
When I accompany my husband to his chemo and radiation, I make time for my self-care and chat with the counselor. It’s been wonderful and healing.
Be Strong Like a Purple Platycodon Balloon Flower
This to-do list has helped me to stay focused, to maintain positivity, to pace myself and my husband during his long journey as a cancer patient, to live life as normal as possible, and to stay on course as his caregiver and patient advocate.
We all cope and manage in different ways. But having a plan, a to-do list, is important. Having a plan is a good way to maintain some control when, at times, the situation may seem out of your hands.
My husband’s favorite color is purple. One day I saw a purple platycodon balloon flower standing erect and blooming brightly through a crack in our driveway.
The moment I saw this beautiful flower I perked up. I smiled.
I was reminded that sometimes life is hard, but like this beautiful flower, we simply need to be strong and to push through.
If this flower can push through the hard concrete of life, so can I and so can you.
Cancer patients have overwhelming journeys ahead of them.
Caregivers need to be strong and healthy to help their spouse/partner push through and navigate the world of cancer.
Having a plan, staying physically active, joining a support group, doing what I love, and seeking professional counseling has helped me to stay physically, mentally, emotionally, and spiritually strong for my husband, and for myself as his caregiver.
Caring for Cancer Caregivers
My experience as a cancer caregiver inspired me to create Ultra Care for Cancer Caregivers, a GoFundMe campaign. It was launched in May 2020 when I ran the virtual D3 24 hour 50K+ Solo Challenge to raise money.
Since June 1, I have been logging miles at the virtual Great Florida Traverse 901 miler. Only 565.67 miles to go.
Running Ultra Miles for Cancer Caregivers
Why I Ran the 24 Hr 50K+ Solo Challenge and Why I’m Running the Tip to Tip Great Florida Traverse 901 Mile…
To help me raise money to benefit cancer caregivers, visit GoFundMe Ultra Care for Cancer Caregivers
Thank you for reading. I’m Miriam Diaz-Gilbert (aka Miriam Gilbert). I invite you to follow me on Twitter, and to visit my website. I invite you to like and follow my Facebook page. Thank you for sharing this story.