When a loved one is diagnosed with cancer, there are no “instruction books” about how to care for them. Everyone’s situation is different. However, many people who have been a caregiver for a loved one with cancer have learned—often through trial and error—what worked well for them.
One of these caregivers, Howard Massey, summarized his thoughts and advice in an article posted by the CLL Society. Howard, whose wife has been diagnosed with chronic lymphocytic leukemia (CLL), describes 3 important roles: listening, anticipating, and participating.1 Kyle Cleveland is also a caregiver to his wife with CLL, and shared his advice during a patient empowerment and education conference.2
Both offered the following helpful suggestions for other caregivers:
- Be a good listener. Encourage the patient to open up and talk. Ask questions and get updates about what is going on. Be there to listen and share ideas. The patient may want to discuss the pros and cons of the next possible treatment. They may have concerns or be anxious about treatment and its side effects, or whether the treatment will work.1,2
- Be a good talker. Encourage discussions about things that are not related to CLL. Be lighthearted when it is appropriate to counteract feelings of fear or depression.2
- Have a backup plan. Have a plan in place before something happens. Accept help from family and friends. Kyle describes that caregivers can and should become care receivers at times, but they need to plan ahead to ensure that someone is there to support the patient.2
- Ask “how can I help?” Howard notes that “little everyday things” that a caregiver does can make the CLL journey less difficult. Caregivers often run errands and prepare meals. Many accompany the patient to doctors’ appointments and/or treatments. During doctors’ appointments, caregivers can act as a second set of ears and/or a note-taker. Caregivers might also use a cell phone to record the doctor’s comments, which can be particularly important if a possible future treatment is being discussed.1
Howard described how involvement in a local CLL support group has been helpful for him as a caregiver. Over the years, meeting other people with CLL and their caregivers has helped him to see many different types of caregiving. He observed that some caregivers are very “hands on” and want to know everything about CLL and its treatment. They research the condition and ask many questions to keep on top of the latest developments. Some people with CLL do not need treatment but are instead “watched” by their doctors. The caregivers of these patients are also watchful—listening, supporting, and helping their loved one as needed. Some patients have no desire to talk about their CLL, and they try not to even think about it. Respecting this, their caregivers become silent supporters.1
Both men agree that, although the CLL journey has its “ups and downs,” traveling the road together with their loved one has been one of their most rewarding and important roles.1,2
References
- Massey H. What you should know as a CLL caregiver. April 5, 2017. https://cllsociety.org/2017/04/what-you-should-know-as-a-cll-caregiver/. Accessed April 6, 2020.
- Dennison B. The role of the caregiver in CLL. November 5, 2015. https://cllsociety.org/2016/03/role-caregiver-cll/. Accessed April 3, 2020.
