When Your Spouse/ Partner Gets A Cancer Diagnosis: The Caregiver To-Do List
Updated: Feb 17, 2021
According to the National Cancer Institute (NIH), close to 2 million people will be diagnosed with cancer in 2020. In March, my husband Jon was diagnosed with colorectal cancer. In April, we learned the cancer has metastasized to his left lung.
The results of the colonoscopy threw us for a loop. His GI doctor said the cancer is treatable. While numbing and overwhelming, this cancer diagnosis was a wake up call. Until then Jon had put aside important matters. I immediately started writing a to-do list. Doing so helped me to begin to cope with the terrible news. I am now ready to write about my journey as a caregiver for my husband, what that entails, and to share.
I am now metaphorically running and pacing myself to help my husband meet needs and challenges he had not anticipated. I created a plan to make sure Jon has everything in order. I am the person to guide him. This is the initial to-do list that we came up with. These 10 items have helped us to cope with the diagnosis and to begin my responsibilities in my new role as caregiver for the two of us. Decisions need to be made by the patient receiving cancer care and the spouse/partner/caregiver.
1. Stay Positive - I am a positive person by nature. The GI doctor said he has seen this type of malignant colorectal tumor often. He said it's treatable. This is a good thing. There are many ways to stay positive after getting a cancer diagnosis. Help your spouse stay positive.
2. Apply for New Health Insurance Coverage - My husband's cancer diagnosis could not have come at a worse time. His Aetna insurance through his employer was set to expire March 31. He was diagnosed on March 6. We had to scramble for new health insurance on the healthcare marketplace. Finding insurance that covered Jon's new GI doctors, surgeons, oncologists, and the astronomical cost of cancer care was extremely stressful. We were both ignorant of the enormous cost of cancer care. But we quickly learned as we sat in the doctor's waiting room for Jon to be called for his colonoscopy. I picked up an issue of Cancer Care Today in the waiting room. The article, The Cost of Cancer Care, left me numb. This is our future, our new normal.
3. Be a Patient Advocate - I'll advocate for those who 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.
4. Help Prepare the Advance Directive/Living Will - While I have an advance directive, at the time of his diagnosis, my husband did not. We sat down with my advanced directive as a template. He prepared his and got it notarized. You do not need a lawyer. 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.
5. 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. You do not need an attorney. This website has last will & testament instructions for every state. This legal document is important and should include all bank account numbers, credit card numbers, mortgage information, life insurance information, retirement accounts, accounts, email and social media passwords, and the individual's wishes. The cancer patient's spouse/partner needs to have this information.
6. Be the Appointment Secretary - My husband refers to me as his press secretary. He is busy with his work schedule, meetings, and travel to work sites. I make the doctor appointments with the oncologists, pulmonologists, nurse practitioners, and all medical and healthcare personnel. 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 can be an overwhelming process for my husband. I take the responsibility to assist. I am the contact person but we make decisions together.
7. Keep a Binder - I have three-ring binders from my teaching and research days. I repurpose them to organize of all his appointments, tests, results, insurance letters, medical bills, receipts, etc. This helps me to keep track of everything in an organized manner.
On a 10 mile trail run and Elliptigo ride 2 weeks after Jon's diagnosis in March
8. Help Your Spouse Stay Physically Strong - Jon and I have always been physically active. He joins me on my long trail training runs. He paces me at ultramarathon events. We hike in the national parks. Last year we began playing tennis again. Since his diagnosis and subsequent radiation and chemo treatments, his physical activity remains the same. He joins me on short and long training runs on his Elliptigo bike. Research shows that physical activity is beneficial during cancer care care.
9. Help Your Spouse Stay Emotionally and Spiritually Strong - One of the first things I did after Jon 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 will cope differently whether it's through prayer, mediation, 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 in their prayers and thoughts brings great comfort to both the patient and caregiver.
10. Take Care of Yourself- Learning that your spouse has cancer is traumatic. You worry about your spouse, what they are going through, and how they are coping. I wear many hats, my newest being patient advocate and caregiver. Maintaining good physical, mental, and emotional health is important. I turn to my faith to keep me spiritually strong. I continue running to keep me physically and mentally strong. Now that it's spring, I find respite in my vegetable and flower gardens. I turn to dear friends and family who love me and Jon. Joining a support group for cancer caregivers is a also a good idea. Cancer caregivers need to take care of themselves, too. We need to self-care in order to be there for the cancer patient.
This initial to-do list has helped me to stay focused, to maintain positivity, to pace myself and my husband during his the long journey as a cancer patient, 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 our hands.
Update: My husband Jon was declared in remission in 2020.