Whether you’re a family member or a friend, helping someone through a diagnosis of myelofibrosis is a perfect example of being a caregiver. Caregiving can mean supporting your loved one by:
- Going with them to doctor visits
- Helping with daily living tasks like cooking and bathing
- Giving medicine
- Arranging care and services
- Providing emotional and spiritual encouragement
Supporting someone during a cancer diagnosis can be tough. You’ll often have to put your loved one’s needs first, which can take a toll on your physical and mental health. But there are ways to meet their needs while caring for your own.
Caring for Your Mental Health
Most caregivers say talking to others about their journey in caring for a loved one is crucial. There may be topics you don’t feel comfortable discussing with your friend or family member with cancer, like feelings of anger or frustration.
Instead, talk to someone like a social worker, psychologist, or religious leader. They may have ideas about how to cope while allowing you to share your feelings about being a caregiver.
Support groups are also available in person, on the phone, or online. Look for groups of people with a similar diagnosis, like cancer, myelofibrosis, or myeloproliferative disorder (a rare blood cancer). You’ll talk about your feelings, share advice, or just listen.
Maintaining Quality of Life
A myelofibrosis diagnosis can mean lots of medical appointments, including blood tests and bone marrow tests. Your loved one could feel sick even when they appear healthy. Despite fighting a serious illness, it’s essential that they find ways to manage their mental health too. Encourage them to find activities that allow them to connect with themselves and others. Ideas include:
- Yoga
- Exercise
- Talking to a counselor or other mental health expert
- More flexible work hours
- Prayer
- Meditation
- Deep breathing and relaxation techniques
- Reading
Doctor’s Visits With Your Loved One
As a caregiver, you may need to go doctor’s appointments with your friend or family member. Here are some ways to help these visits go smoothly:
Keep medical information on hand.
It can be a file or notebook with dates of procedures and tests, names and doses of medicines, and how often your loved one takes them.
Keep a list of questions and concerns.
Since you’ll have limited time with the doctor, order your questions from most to least important.
Be ready to answer questions.
The doctor will likely have questions for your loved one. Prepare your answers ahead of time as much as you can. Here are some questions they could ask:
- When did your symptoms first start?
- Do they happen all the time or every once in a while?
- Are your symptoms mild or severe?
- Does anything make your symptoms better or worse?
Take notes.
Write down the names of specialists the doctor has referred you to, prescriptions, and any follow-up questions. You may even want to ask the doctor if recording your appointment is OK to make sure you don’t miss anything.
Caring for Yourself
As you care for your loved one with myelofibrosis, you may put your own needs on the back burner. But doing so for too long can negatively affect you physically and mentally and lead to burnout.
Caring for yourself means taking time out of each day to relax and rejuvenate. You could nap, exercise, take up a hobby, or watch a movie. Also, remember your personal and social life. Make time to connect with friends and maintain some of your regular activities.
Asking for Help
Think about how others can help with your caregiving duties. Sharing this responsibility takes some of the load off you, leaving you more time for self-care. Other people in your friends or family circle could help with:
- Chores like cooking, cleaning, and shopping
- Child care, including transportation to and from school or other activities
- Taking your loved one to doctor’s appointments
- Picking up prescriptions
- Sharing updates about your loved one with the rest of your friends and family
Show Sources
Photo Credit: Tetra Images/Getty Images
SOURCES:
National Cancer Institute: “Support for Caregivers of Cancer Patients,” “Support for Caregivers: When Someone You Love Is Being Treated for Cancer.”
Mayo Clinic: “Myelofibrosis.”
Cancer Care: “Coping With Myelofibrosis.”
