It's National Caregivers Month, and we are here to shed some light on the caregiver experience.
While many caregivers or loved ones of chronic lymphocytic leukemia patients don't regret taking care of their loved ones, many times, they may feel overlooked and unvalued because so much of their "new life" is focused on the patient.
It's easy to start feeling resentful, hurt, or frustrated because of this significant change in your life when your loved one is diagnosed. It's also normal to have these feelings reoccur intermittently throughout your CLL journey, no matter how long your loved one has been diagnosed.
Whether you are a patient or a family member looking to support a CLL caregiver or you're the caregiver looking to take care of yourself, here are some suggestions to make a CLL caregiver's life a little easier.
Ensure Time for Self-Care
Between the doctor's appointments, prescription pickups, potential hospital stays, and other everyday life tasks, it can feel impossible for the caregiver to find time for themselves.
If you are a patient or a loved one of this caregiver, ensure that they are taking time for themselves. If that means stepping in to help with transportation, grocery pick-up, or offering to take a daily walk with said caregiver, making sure they have time to take care of themselves is crucial.
To the caregivers reading this article, carving time for self-care does NOT look like finding time to eat, scheduling more appointments, cleaning the house, etc. It means taking time for things like:
- a warm bath
- a silent walk around the neighborhood
- a dance party in the garage
- a hobby (scrapbooking, knitting, gardening)
- watching a movie
Friends and loved ones can offer to cook meals, clean the house, or run other necessary errands for the caregiver this month in order to ensure time for self-care.
Caregivers, while it may be hard to accept outside help at first, remember that you must put your oxygen mask on first before helping others. You want to make sure your cup is full so you can continue to give. Burnout can lead to serious health problems of your own, so make sure that you are making time to take care of yourself. You deserve it!
Learn About The Disease
If you are a patient or a loved one of a caregiver, learn more about CLL! While Dr. Google can be scary, there are many other options for CLL 101 education, such as website pages and HealthTree University, where you can get caught up on the disease.
Many caregivers that I have spoken to feel the burden of carrying the disease knowledge (and therefore the disease decisions) on their own. This can lead to intense stress and guilt on behalf of the patient. Having someone to share it with can be crucial to the caregiver's well-being.
Caregivers, if you are feeling "behind" on disease knowledge, consider asking a loved one to learn more with you. If you are feeling overwhelmed by CLL news, give yourself permission to turn it off for a couple of days (or weeks) and focus on daily life around you. Carrying too much alone can be a burden.
Show Up and Listen
Sometimes, a regularly scheduled phone call or visit can be exactly what the caregiver needs. Take time to listen to them without interrupting and certainly without judgment. Knowing they have someone they can depend on will help them cope with the other stresses that their life is presenting.
Caregivers, don't feel like a burden. Schedule weekly phone calls with a loved one or ask your neighbor to drop by once a week and check on how you're doing. Growing a consistent circle of support can help you feel in control of a situation (or diagnosis) you never expected to find yourself in.
Remember, supporting and caring for the caregiver is so important to everyone's well-being in a CLL journey. Don't feel like you can't do anything to help when you see your loved ones dealing with a CLL diagnosis. There's much that you can do to be supportive and helpful.
If you are a CLL caregiver seeking support, join our CLL caregiver chapter to participate in future events. You are also invited to join our caregiver Connect group. Remember to seek and accept help. You are not a burden, and you deserve support and care.
about the author
Audrey joined the HealthTree Foundation as a Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.