Caregivers Play Critical Role in Patients’ Journey through Cancer
Caregivers play a central role in how well patients navigate through their illness. Most often, they are not trained for the role of caregiver, nor are they paid to do the job; but their support is critical to the physical and emotional well-being of their loved one.
Taking care of a cancer patient amidst all of your other responsibilities can be a serious balancing act. To meet the continuous demands of caregiving, it can be helpful to think of yourself as training for a marathon. To keep up your strength, be sure to stay up to date with your medical needs; eat healthy foods; exercise for at least 15–30 minutes a day; stay hydrated; avoid drinking too much alcohol; practice stress-reducing techniques such as meditation and yoga; get enough rest; and know your limitations.
Caregiving comes in many forms: a live-in caregiver (typically a spouse, partner, parent, adult child, or close friend), a long-distance caregiver, or group caregiving that is performed by members of a team who typically live nearby. Group caregivers can be any combination of family members, friends, neighbors, members of a religious community, hobby group, or paid caregivers. This division of labor offers a great solution when a live-in or primary caregiver is not an option. Group caregiving can also be a great support system for a primary caregiver.
While long-distance caregivers can’t contribute day to day, they can help to conduct research, problem solve, and provide emotional support. They can also provide respite care for the primary caregiver by visiting as often as they are able.
Daily responsibilities are often of a practical nature, whether it’s shopping for groceries, preparing meals, doing laundry, or helping out with child care. But as you step into the patient’s “cancer world,” you will discover a more profound role that you can play in their care. First and foremost, whenever possible, try to attend doctor visits with the patient — especially in the beginning. A second set of ears is invaluable to the patient. This also makes it easier for you to know what’s happening with your loved one’s cancer care and to ask any questions you may have. If you are unable to attend doctor appointments, see if you can tap into your loved one’s caregiving network to ensure that he or she will have support during critical medical appointments.
It’s also important that you get to know all of the members of your loved one’s medical team so when problems arise, you know who to call. Make sure to have the patient sign a release form that enables the medical team members to discuss their care with you. You’ll also want to collect the medical team’s contact information. Of course, problems also arise when the doctor’s office is closed. Make sure you know who to call after hours, on weekends, and on holidays.
Communication is another important part of caregiving. One way to keep everyone on the caregiving team informed is to regularly hold “family meetings.” These meetings always include the patient and could also include a family friend, neighbor, or paid caregiver. If it’s hard to get everyone together, you can always schedule an online video meeting or conference call. Topics may include the latest report from the doctor; medical complications the patient is experiencing; what the patient needs or wants from the caregiving team; and who has time to help with various tasks.
While it is easy to get caught up in all the logistics of cancer care, the psychological toll that cancer takes on patients should never be underestimated. One of the most valuable ways you can help your loved one is to let them know that you are also there to listen to whatever is going on with them and that you will be on this journey with them every step of the way.
By constantly putting the needs and feelings of your loved one ahead of your own, you are likely to feel depleted. To avoid the common pitfalls of isolation, stress, and burnout, it’s important to adopt effective coping strategies. By taking care of yourself, you’ll be better equipped to take care of your loved one.
One way to support your well-being is to accept help from others. Seems obvious, but many people feel compelled to tackle this task on their own. In most cases, you would actually be doing friends and family a favor by allowing them to help. The simple gift of someone keeping your loved one company while you take a couple-hour break can be invaluable.
You can also get a lot of support by telling your caregiving network about websites like Lotsa Helping Hands, CaringBridge, and SignUpGenius. All of these sites feature online calendars that let people sign up for different jobs or tasks. This saves valuable time — not only because other people are doing the tasks, but also because the scheduling is automated so you don’t have to shoulder the burden.
If you’re balancing a full-time job along with the role of caregiver, you may want to learn about the Family and Medical Leave Act (FMLA). This can provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member. Employers must continue benefits during the leave period and some may allow a flexible or reduced work schedule.
While every patient’s needs vary based on their age, their constitution, and the severity of their illness, some needs are universal. For a glimpse at what lies ahead, and to help you determine which tasks you’d like to perform — and invite others to perform — I’ve compiled the following list.
· Keep a record of medical appointments
· Attend medical appointments with patient
· Manage multiple medications and make sure patient is complying with dosages
· Report medical problems to cancer care team
· Gather contact information for all the members of the patient’s cancer team
· Keep family members and friends informed of what’s happening
· Serve as communicator between patient and healthcare team
· Use online calendar to keep track of who is helping with what and when
· Arrange for patient transportation to medical appointments
· Grocery shopping and meal preparation
· Laundry and light housekeeping
· Help with child care
· Pay household bills
· Fill prescriptions
· Track medical bills and health insurance claims
· Keep track of medical paperwork
Legal tasks if patient is in the hospital
· Review and share Power of Attorney document, where patient names a health care agent.
· Review and share Living Will document which outlines the types of life-sustaining end-of-life medical care a person would or would not want.
· Make sure these documents are in the patient’s medical record and that the health care team is aware of the patient’s wishes.
· If the person with cancer does not have these documents, it may be possible to complete the forms in the hospital.
Watching a loved one suffer is both physically and emotionally draining. Fortunately, there’s plenty of support available for caregivers — from local hospital and cancer clinic support groups to online support groups. Talking with others who are in a situation like yours can make you feel less alone. You can also get useful ideas from others. You may also want to talk to the hospital’s chaplain or ask around to find a good counselor. And no matter how busy your schedule, don’t forget to allocate time to spend with your friends. They can be a lifesaver at a time like this.
Below is a list of organizations that offer invaluable support for caregivers. Be sure to visit every site, as each offers different types of support.
CANCER-SPECIFIC CAREGIVING SUPPORT
American Cancer Society Caregiver Resource Guide
Topics include self-care, coping skills, how to protect your health and well-being, and important resources for getting help and support.
National Cancer Institute Support for Caregivers of Cancer Patients
Topics include coping with being a cancer caregiver, asking for help, taking care of yourself, and long-distance caregiving.
UNIVERSAL CAREGIVING SUPPORT
Offers support for those who care with loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Features a caregiver hotline, instructional videos, technology to help you care for your loved one, and more.
When you register with FCA, they will call you to assess your needs. All resources are free, including support groups and an extensive video series on a wide range of caregiving topics. Many of its resources are in Spanish, Chinese, and Vietnamese.
Offers recommendations for caregiver books, blogs, podcasts, and apps.
Matches a person with cancer with someone who has completed treatment for the same type of cancer. The program also matches caregivers.
Provides peer support and education about the challenges that caregiving spouses face every day.
Jennifer Omholt is a professional writer, cancer advocate and 20-year cancer survivor writing a book for newly diagnosed cancer patients entitled, The Cancer Playbook: A survivor’s guide through the critical weeks after diagnosis.