by Gwen Spector, Complex GI Nurse Navigator at Sarah Cannon Cancer Institute at Medical City Healthcare
Caregiving can be a tough and deeply personal role. A caregiver is a family member, partner, or friend who assists their loved one through all or part of their health journey. Caregivers help with daily activities, which can include anything from transportation to the total care of their loved ones. They may be the decision makers or simply a source of emotional support.
Young adults as caregivers
Many caregivers are young adults, in their 20’s and 30’s, taking care of a parent with cancer. The young adult years are a time of life when a person is starting and growing their families and careers. Caregiving during this time brings many of its own challenges, as the young adult may have more duties to juggle. It is an emotional job to care for someone who once cared for you.
A personal perspective
I know the difficulties of caregiving for a parent as a young adult from my own life’s experience. My father was diagnosed with lung cancer when I was 25 years old. I was still a novice nurse, working a full-time job and living on my own. Within weeks of his diagnosis, I moved back home and became part-time caregiver to my dad, a role I shared with my mother. Our family structure flipped as I soon became the sole breadwinner for our family. We faced several barriers during his journey including his loss of income and insurance. It felt like life stopped when he was diagnosed and yet it didn’t and it couldn’t because there was too much to do in order to fight his cancer.
Resources to help you on the journey
There were very few resources available to my family when my father was battling cancer. It is no less devastating today when your parent is diagnosed with cancer, but the good news is there are many resources available to help you. There are support groups, online tools, and Nurse Navigators. Navigators provide emotional support, education, and guidance to patients and families through their cancer journey. I think of my wonderful lung cancer navigator colleagues and how much they would have made a difference in my dad’s journey.
Tips to help you manage the caregiving role
Caregiving can be a difficult and emotional time for the caregiver, parent, and the rest of the family.
- Learn about your parent’s cancer and how to care for them.
- Talk with their medical team and attend appointments with them if you are able to and allowed.
- Keep a notebook with a list of questions, tips and contacts. Organize their medical information if you will need access to it.
- Read about their cancer, treatment, and side effect management from reputable websites like American Cancer Society and National Cancer Institute. You can also look at websites specific to your parent’s cancer.
- Take care of your physical and emotional health so that you can be in the best shape for your parent and other family members.
- Get enough sleep, exercise regularly, and eat a healthy diet.
- Take scheduled and unscheduled rest breaks and time for doing activities that bring you joy, laughter, and peacefulness.
- Reach out to your own social support system for emotional support and help with tasks.
- Connect with people going through a similar experience by attending a support group, CancerCare has an online young adult caregiver group, or asking for a peer or mentor through organizations like 4th Angel.
- Consider counseling if you are having trouble managing your emotions and it’s affecting your life and relationships. You can start by calling CancerCare at 800‑813‑HOPE (4673) for free short-term one on one counseling.
- Make a plan and get help managing your life’s duties.
- Ongoing communication is key when coordinating care with other people and making decisions that affect your day to day life.
- Ask for help from friends of yours and your parent, family members and your faith-based organization. There are websites and apps to help you do this like Caringbridge, CareCalendar, and Living with Cancer.
- If you share caregiver duties with other people, make a plan with them up front and update it as needed to make sure your parent’s needs are covered. If your other parent or step-parent is also a caregiver, be sensitive to their role.
- Don’t neglect your own family if you have a spouse and children. You have to prioritize what’s most important and what can be done later or by someone else.
- If you work, talk to your boss and HR department about taking time off to help your parent. Ask if you are eligible for the Family Medical Leave Act (FMLA).
- The time spent with your parent can be challenging but meaningful. You may be their caregiver now but you are still and will always be their child.
- Be open and honest with each other. Know and honor your parent’s wishes and make a plan that you both can agree on.
- Be patient and allow your parent to have as much independence as safely possible. Remember their world has just turned upside down too and there is grieving with that type of change.
- Be aware that your parent may become frustrated and lash out at you. Try to remain calm and not react in anger.
- Carve out some quality time together, even if for brief moments, to do something that you both enjoy.
Please know you don’t have to go through this alone. Contact your parent’s Nurse Navigator for guidance, support, and resources. If they don’t have a Nurse Navigator then ask their doctor or call their hospital referral line to get you in contact with one.