Chronic lymphocytic leukemia (CLL) is a common type of leukemia that can require significant help from caregivers. Make sure you’re taking care of yourself so that you can optimally take care of your loved one.

A caregiver is an often-overlooked and incredibly important member of a person’s cancer care team. Caregivers, who are often loved ones, provide at-home and sometimes round-the-clock support for people living with cancer such as CLL.

Though caregiving can be rewarding, it can also be strenuous.

Helping care for a loved one with CLL can be challenging. Experts recognize that it can often lower a caregiver’s quality of life and contribute to a lack of personal care. And responsibilities associated with CLL caregiving may grow over time since many people living with CLL do not have any symptoms at first.

If someone with CLL needs care, most available treatments are non-curative. This means the person will never be fully rid of CLL.

If your loved one does need treatments, they may include targeted therapies and chemotherapy. Many of these treatments involve injections or infusions at treatment centers, and they may cause side effects.

Your loved one who has CLL is also at greater risk of contracting infections. They will need to use caution to avoid influenza (the flu) and other infectious diseases.

Additionally, they are at risk of developing Richter’s transformation. This change occurs in about 2–10% of people living with CLL and represents a sudden switch to a more aggressive cancer with an overall unfavorable outlook.

As a caregiver, you can help your loved one in many important ways, such as:

  • transporting them to and from appointments
  • helping with medication administration
  • running errands
  • helping with personal care, such as bathing or eating
  • asking questions at medical appointments
  • advocating for them at appointments
  • supporting them through a changing mental health status, such as the development of anxiety or depression
  • helping them take extra precautions to stay healthy

These are not small responsibilities, and at some point you may find that you need to take time off work to help. Being a caregiver may also affect your social plans and the time you have to pursue your hobbies and interests.

The best and most effective caretakers are those who are mentally and physically healthy because they have attended to their own needs before those of their loved one. This “putting your own oxygen mask on first” strategy is vitally important to avoid burnout. Here are some important ways to do this:

Do not neglect your own needs

Make sure you take time to shower, eat regular meals, and maintain your self-care routines. These habits can help you feel better and give you a sense of normalcy.

You may also want to consider exercising regularly, preparing healthy meals when possible, and taking time to enjoy activities you like.

Consider joining a support group

Cancer support groups are not just for those living with cancer. Many organizations offer support for people like you — people who are helping those living with cancer.

The CLL Society offers information and help for caregivers of people living with CLL. The American Cancer Society may also have local or virtual support groups near you.

Your loved one’s medical care team may be able to provide information on hospital-based support groups for caregivers in your area.

Communicate your needs

According to a 2023 study, one way that you can help improve your quality of life and prevent caregiver burnout is by learning to communicate your own needs to others.

This can mean finding friends or family to give you some relief from the caregiving duties or clearly communicating other ways your network can help you.

Consider talk therapy

Mental health therapy may be helpful if you find yourself feeling stressed or overwhelmed. Talking with a therapist and trying science-based strategies such as cognitive behavioral therapy may help you find peace and reduce stress.

Learn new methods to manage anxiety and stress

As much as you want to do it, it can be stressful to help someone who is living with CLL. You may find that you benefit from engaging in activities that can help reduce anxiety and stress, which may include:

  • deep breathing
  • meditation
  • light exercise, such as walking
  • nature exposure
  • yoga

You have the right to feel burned out, tired, or like you need a break from providing care to a loved one. If you need a break, consider having a backup at the ready — friends or family members who can provide aid while you rest or take care of yourself.

You may also have certain legal rights that help protect your employment if you need to take some time off to help care for a loved one with CLL. According to the Family and Medical Leave Act, you have the right to take up to 12 weeks of job-protected leave in a year to help care for a spouse, child, or parent.

To exercise this benefit, you must work in a company with 50 or more employees and must have worked for the company for at least 1,250 hours over the last 12 months. Your time off is also not paid.

When planning to care for a loved one, you should check with the human resources department of your company to see whether you qualify for leave or whether they have a specific leave policy in place.

Caregiving can take a lot of energy. You may find yourself helping with daily care, taking your loved one to appointments, and helping with treatment.

As a caregiver, make sure to take steps to care for yourself too. This can include attending to your own needs, joining support groups, going to therapy, or engaging in other activities that help you feel better and reduce your stress level.