Caregiving

People with chronic lymphocytic leukemia (CLL) may become more dependent on caregivers as symptoms of the disease or side effects from treatment make daily activities more difficult. Just like their loved ones with cancer, caregivers need information and support. Careful planning, good self-care and knowledge about available help can ease stress. Some strategies that can help caregivers:

• Encourage communication. Take time to listen when patients share their experiences, and feel free to talk about things not related to CLL.
• Offer choices. Try to provide options whenever possible, from what to eat for breakfast to where to live — the ability to make choices is a basic freedom. Even as a patient’s options become more limited due to health losses or financial constraints, find ways to offer a selection of alternatives.
• Facilitate independence. If your loved one is still able to perform certain activities, encourage him or her to do these tasks. This can create a feeling of independence, which is invaluable in a care-receiving situation.
• Delegate specific tasks: Identify willing family, friends, neighbors and co-workers to take on specific and limited, but still important and ongoing tasks, or to just talk, keep company and otherwise provide support.
• Take care of yourself. Caregivers often become exhausted as they try to manage caring for someone else on top of meeting their usual responsibilities, which makes it more difficult to make decisions and maintain positive interactions. Take time to engage in enjoyable personal activities to get refreshed, even if it means spending time away from a loved one.
• Have a backup plan. Talk to family and friends about stepping in if the primary caregiver becomes ill or experiences an unexpected event and can no longer provide care.

Resources for Caregivers

Reaching out to others in similar situations is one way caregivers can find support for an experience that may otherwise feel isolating. The Leukemia & Lymphoma Society offers options such as these.

• Online chats: A live, weekly online forum, moderated by an oncology social worker, allows caregivers to share experiences and chat with each other.
• Patti Robinson Kaufmann First Connection: This telephone support program links caregivers with a trained peer volunteer who has experienced a similar situation.
• LLS community: Chat with other caregivers and stay up-to-date on the latest diagnosis and treatment news. Share your experiences and get personalized support from trained LLS staff.