Being a care partner to a myeloma patient, no matter where they are in their journey, can be extremely overwhelming. It adds more roles and responsibilities to your already busy schedule. You serve out of love, but there is no denying that wearing all of the hats that a caregiver brings can be exhausting at times.
At the beginning of the myeloma journey, shortly after diagnosis, many myeloma caregivers wonder what their role will look like in the upcoming years. The truth is these roles can differ based on the age of the myeloma patient, the treatments that they receive, and the status of their disease.
For example, older patients might require a ride to their chemotherapy appointments, while younger patients can usually drive themselves. Younger patients might need several reminders to take their medication, while older patients remember to take it with their other daily medications. All patients, young and old, would need extra care during and after a stem cell transplant. Many patients benefit from having someone to talk to or a shoulder to cry on.
Sometimes your role as a caregiver can include being a walking/exercise partner. Other times it can include being an appointment keeper or secretary at certain appointments. It might be as simple as picking up the slack on the days that the patient feels fatigued, or it can be as difficult as being the brunt of verbal abuse during Dex Days.
(Please note that if your partner or parent is aggressive on dexamethasone and says or does hurtful things which are outside of their normal personality, this should be discussed with a doctor to consider a dose reduction or removal of dexamethasone in the treatment. It should not be tolerated.)
Maci Chance, a myeloma caregiver of 2+ years, recently visited the Myeloma Caregiver chapter to share her personal experience as a caregiver and what her advice would be to others who are trying to balance all that comes with being a caregiver. You can watch her full story below, but here are some highlights of the stories that she shares:
1. There is no such thing as balance. At different times in the myeloma journey, you will be required to spend more time in some areas of your life than others. For example, Maci was a full-time working mom and partner to Tad. During Tad's stem cell transplant, she was able to take a sabbatical from work to concentrate on the mother and partner/caregiver roles in her life. She has since returned to work but emphasized the need not to try to search for balance but rather go where you are most needed. It requires sacrifice, but it is worth it not to burn out in all areas of your life.
2. Therapy can be a lifesaver. Having an uninvolved third party to talk about your frustrations and concerns can be incredibly helpful. This is a stressful time, and you deserve the chance to process your grief and worry with a trained professional who can help you. Ask the social worker at your center or your general practitioner for recommendations. You can also call your insurance to see who/what they cover within your network. You are worth finding a good, helpful therapist!
3. Don't be afraid to ask for help. It might be hard to let go of the "control" that you feel, but by asking for help, you are taking care of yourself. Perhaps someone else could take your mother to her chemotherapy appointment, your neighbor can pick up her groceries, or your brother can take a turn sleeping over at her house after her stem cell transplant. Asking for help allows you to better serve in the future.
Hear Maci's story below, and make sure to join our HealthTree Caregiver Chapter today if you haven't already:
A special thank you to our sponsors without whom these events are not possible:
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.