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Taking Part in Your Loved One’s Journey with Chronic Lymphocytic Leukemia

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The role of a caregiver is complex and evolves throughout a patient’s cancer journey. Often, a caregiver wears many hats – trusted confidant, the one offering emotional and physical support, and a shared decision-maker. Right from the start, many caregivers may put their own needs and feelings aside to focus on the individual living with cancer, but it can be hard to maintain this imbalance and the stress it can cause for a long period of time.

The negative effects of stress are especially prevalent when dealing with chronic lymphocytic leukemia (CLL), a slow-growing form of blood cancer that can take a significant mental and emotional toll on patients and caregivers. The shared decision-making to plan next steps following a diagnosis often causes feelings of anxiety.

These emotional complexities can be compounded when treatment isn’t deemed necessary and the disease instead is monitored until symptoms are present. Once treatment needs to be discussed with the healthcare team, the complexity of choosing a medicine including therapy that offers time off treatment or other options can be daunting.

In fact, a recent U.S. survey about the emotional impact of CLL, which included responses from 100 caregivers of CLL patients, found that while most caregivers (81%) feel positively about caring for someone with CLL, nearly three in four state that being a caregiver is more difficult than expected.1

While caring for someone living with CLL, a caregiver can play a vital role in helping them address challenges and providing necessary support. To be an effective partner on this journey, it’s important to not only understand this form of blood cancer, but to also understand how to equip yourself to nurture your own wellbeing.

Know the Facts About CLL

CLL is a type of cancer of the blood and bone marrow. CLL cells are found primarily in the bloodstream, the bone marrow, the lymph nodes and the spleen. It typically progresses slowly, usually affecting older adults. Treatment for CLL isn’t always needed right after diagnosis.2,3 Healthcare professionals commonly call this approach “watch and wait”.

Some people with CLL don’t initially have symptoms. When they do occur, symptoms often develop gradually, with those who are affected seeing little to no changes in their health for years. Some signs and symptoms of CLL include getting tired more easily, shortness of breath, swollen lymph nodes or spleen, repeated infections and unexplained weight loss.4 People with CLL may also experience aches, fever and night sweats.4

Understanding the Caregiver/Patient Relationship

Transitioning into the role of a caregiver can have an impact on even the strongest relationships as previously established expectations change while daily routines and beloved hobbies are disrupted. For both patients and caregivers, feeling overwhelmed and tired may become the new normal. The above survey found that patients with CLL experience a range of different emotions when they first learn about their diagnosis, which among others include feeling worried (32%), uncertain (36%) and tired (36%).1 Among caregivers, 74% strongly or somewhat feel that role is more challenging than they anticipated.1

As many people want to protect their loved ones and take care of anything that may cause them discomfort, the perceived lack of control in this situation can cause emotional hardship for caregivers. As one caregiver shared in the survey, they don’t know what’s going to happen from one minute to the next.1 This additional stress can create strain on the caregiver and patient relationship.

Caregiving is a testament to the love and dedication we have for others. Combatting emotional stressors and prioritizing your own mental health not only helps you but also helps your loved one. Being a caregiver can be emotionally draining, but it can also be emotionally rewarding as you and your loved one forge a new path and partnership together.

Finding Emotional Balance as a Caregiver

It is important to maintain balance in your life as a caregiver and as an individual with your own needs and feelings. Finding stress-relieving activities can help you manage your stress and can also sometimes serve as a bonding activity with you and your loved one.

Following are some stress-relieving activities to consider:

  • Meditation: The simple act of taking a breath can increase energy levels and bring about a sense of mindfulness that may be helpful with making decisions.5
  • Walking: Getting away from screens and devices and back to nature could have a calming effect on your overall mood and help you see things more clearly.5
  • Talking: Talking with a friend, family member, support group, counselor, or therapist to share your thoughts and feelings about CLL or anything else that's on your mind may be helpful.6
  • Journaling: Journaling can be a great way to process your thoughts and emotions, especially if you don't feel comfortable sharing certain feelings with family or friends.7
  • Hobbies: Doing relaxing activities you enjoy, such as cooking, baking or reading—alone or with others—can help you pour energy into activities that are fun and comforting and help take the focus off CLL.6

Finding a community of other caregivers can also help provide you with additional emotional support. Oncology social workers and the patient’s cancer center may be able to connect you with a local group in your area. Patient advocacy organizations also sometimes offer support groups, such as CLL Society.

Remember to be kind to yourself. Your support of your loved one throughout their journey has a significant impact on them. But being a caregiver and an effective partner for your loved one requires you to prioritize your own mental, emotional and physical health.

To learn more, visit LivingWithCLL.com.

References

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1 AbbVie. (2022). Emotional Impact of CLL Patient, Caregiver and HCP Survey. Data on file.

2 Chronic lymphocytic leukemia. Mayo Clinic. Available at https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428?p=1. Accessed October 2022.

3 Chronic lymphocytic leukemia. National Organization for Rare Disorders. Available at https://rarediseases.org/rare-diseases/chronic-lymphocytic-leukemia/. Accessed October 2022.

4 Leukemia & Lymphoma Society. The CLL guide: information for patients and caregivers. Revised 2014. Available at https://www.lls.org/sites/default/files/file_assets/cllguide.pdf. Accessed October 2022.

5 Cancer.Net. Coping with Cancer. Managing Stress. July 2019. Available at https://www.cancer.net/coping-with-cancer/managing-emotions/managing-stress. Accessed October 2022.

6 American Cancer Society. 6 tips for managing stress. May 7, 2020. Available at https://www.cancer.org/latest-news/6tipsformanagingstress.html. Accessed October 2022.

7 CancerCare. Healing with words: journaling and reflecting throughout treatment. Last updated June 02, 2020. Available at https://www.cancercare.org/publications/263-healing_with_words_journaling_and_reflecting_throughout_treatment. Accessed October 2022.