A diagnosis of blood cancer dramatically affects the lives of families and all others who have a relationship with the patient. The patient and the entire family may experience an emotional, physical and, possibly, financial impact. Both patient and caregiver usually need to rearrange daily activities to some degree – changes that may not come easily.
In November 2009, the National Alliance for Caregiving(link is external), in collaboration with the AARP, estimated that there were 65.7 million people in the United States who provided care for a chronically ill, disabled or aged family member or friend during any given year. Family caregivers are a vital extension of the healthcare team. WM is often treated on an outpatient basis, frequently leaving the responsibility for the details of patient management to a caregiver.
Caregiving often starts gradually with tasks such as driving to medical appointments, shopping for groceries and housecleaning. Over time, this can even lead to round-the-clock care and can sometimes feel overwhelming. Caregivers tasks may grow to include feeding, bathing, supervising medications, arranging medical care and managing financial and legal affairs.
Care for the Caregiver
As a caregiver, you need as much information and support as the person with WM. After all, if you sacrifice your own health and well-being, you won’t be at your best to effectively care for a loved one. With careful planning, good self-care and a knowledge of available help, your job can be less stressful.
As caregivers of WM patients you are encouraged to:
- become knowledgeable about WM by reading our publications
- attend the annual IWMF Educational Forum
- join an IWMF Support Group in your area
- participate in the LIFELINE
- participate in IWMF Connect
In addition, as a caregiver of a lymphoma patient, we suggest that you become familiar with the caregiver programs offered by the Leukemia and Lymphoma Society (LLS). These can be found at (link is external)https://www.lls.org/support/caregiver-support/(link is external). The LLS offers a free Caregiver’s workbook, https://www.lls.org/support/caregiver-support/caregiver-worksheets which is also a helpful resource.
The American Cancer Society offers many resources for Cancer Caregiver Support: https://www.cancer.org/treatment/caregivers.html
The LLS has also developed a set of 3 videos about “The Caregiver’s Journey”. The videos are about finding support for caregivers, exploring the emotions caregivers experience, and ways for caregivers to care for themselves. Click here to watch the videos.(link is external)
Additionally, the American Society of Clinical Oncology (ASCO) has developed and made available a document that addresses the role of the caregiver and provides helpful tips and guidelines for how best to approach that role. Click here to view the document.(link is external)
Other Helpful Resources
- IWMF Webinar from April 2022 with Dr. Hannah Rose Mitchell: Care for the Caregiver: Tips and Strategies for Building in Self-Care
- CancerCare– Caregiver Portal
- Help for Cancer Caregivers Website
- My Cancer Circle