Chronic lymphocytic leukemia (CLL) is often discovered during routine blood work before patients even have signs or symptoms of the disease.1 It can therefore come as a surprise to a patient’s family or friends when they suddenly are asked to assist the person who has received the diagnosis.
Caregivers – those who are consistently caring for a person with a serious illness – provide important ongoing support for patients.2 This support can be medical, like reminding the patient to take their medications; practical, like shopping for groceries or driving to medical appointments; or emotional, like being someone that they can simply open up to.2,3
The role of a caregiver may not be consistent and often adapts as the patient’s disease progresses or goes into remission, and as the treatment plan changes.2 Though the circumstances may change, it is important for caregivers to be a consistent source of support for the patient. Being dependable and keeping promises can alleviate the strain on patients while preventing them from feeling like a burden to their caregiver.2
Patients with CLL are generally older, with an average age of 70 years at the time of diagnosis.4 Caring for an older adult can pose special challenges given worries about loss of independence, and the role reversal of having to care for a parent can be particularly uncomfortable for both parent and child.3 Caregivers should do their best to respect an adult patient’s right to make their own decisions, except when they could be dangerous to the patient or others.2 Making decisions is one way that patients can continue to express themselves and caregivers can facilitate this by offering them choices whenever possible.2 Caregivers can also help a patient maintain a feeling of independence by encouraging them to perform the activities that they can still do.2
Throughout the caregiving journey, it is important that caregivers make time to take care of themselves. Getting enough sleep, exercising, and eating well are important aspects to self-care and can be essential to preventing burnout.2,5 Journaling, connecting with friends, and simply having a place to go to ‘escape’ can help with the mental stress of caring for someone who is sick.5
Trying to be the sole source of support for a patient can be draining, so caregivers should seek and accept help from other available friends and family members.2,5 Mobile apps exist that can help several people coordinate caregiving tasks and can help the primary caregiver to have a break when needed.2,5
Caregiving can often be a full-time job, but caregivers should not neglect their own well-being or feel guilty if they do things for themselves.5 By keeping themselves physically and emotionally healthy, caregivers can give their loved ones the best possible support over the course of the patient journey.
References
- Eek D, Blowfield M, Krogh C, et al. Development of a conceptual model of chronic lymphocytic leukemia to better understand the patient experience. Patient. 2021;14:75-87.
- Leukemia and Lymphoma Society. Introduction to caregiving. www.lls.org/sites/default/files/National/USA/Pdf/Publications/Caregiver_Workbook_Ch1_Introduction_to_Caregiving_2019.pdf. Accessed May 19, 2021.
- Leukemia and Lymphoma Society. Communicating as a caregiver. www.lls.org/sites/default/files/National/USA/Pdf/Publications/Caregiver_Workbook_Ch2_Communicating_as_a_Caregiver_2019.pdf. Accessed May 19, 2021.
- Sharma S, Rai KR. Chronic lymphocytic leukemia (CLL) treatment: so many choices, such great options. Cancer. 2019;125:1432-1440.
- Leukemia and Lymphoma Society. Caring for yourself. www.lls.org/sites/default/files/National/USA/Pdf/Publications/Caregiver_Workbook_Ch7_Caring_for_Yourself_2019.pdf. Accessed May 19, 2021.