Chronic lymphocytic leukemia (CLL) is a cancer that affects cells in the bone marrow and blood.
In many cases, symptoms of CLL develop slowly over time. As cancer cells begin to crowd out healthy cells in the blood, people with CLL may experience fatigue, anemia, and infections that can make it difficult to complete everyday tasks.
Between the cancer symptoms and possible side effects of treatment, many people with CLL require help navigating their lives with the condition. Loved ones often play an important role in caring for people with CLL.
If you find yourself in this caregiver role, it can be overwhelming trying to figure out where to start. Here are some tips for caring for someone with CLL.
Learning more about CLL can help you better understand what to expect regarding symptoms and treatment. Removing some of the unknowns may help relieve your stress and allow you to keep your loved one briefed on what happens next.
You may want to start by exploring resources from reputable professional organizations. Some of these organizations include:
Online or in-person support groups can also help you learn more about the specific experiences of people living with CLL.
If your loved one is comfortable with it, you can help them with their medical care by attending doctor’s appointments with them, asking questions, and taking notes.
It may be difficult for your loved one to absorb all of the information communicated at their appointments. You can help them remember important details they may have forgotten or understand the treatment risks and benefits they may not otherwise consider.
Being at appointments also offers you an opportunity to connect with your loved one’s healthcare team to discuss any concerns you may have. This may increase the likelihood that the concerns are addressed, according to a
Your loved one will need to give their consent for you to be involved with their medical care. If they do, their healthcare team may ask that they sign a release form acknowledging your involvement.
Certain CLL treatments may cause mobility issues due to nerve damage, pain, or fatigue. Making small changes to the home can make life safer and easier for your loved one as they deal with side effects of CLL therapy.
Some home modifications to consider may include:
- moving everyday items to easily accessible places
- lowering the bed
- installing a shower seat and nonslip bathmats
- replacing glass or ceramic dishes and cups with nonbreakable ones
CLL most commonly affects older adults, which means that fatigue and treatment side effects may make it especially hard to stay on top of daily tasks. People with CLL may need help with many basic chores, such as cleaning, mowing the lawn, and grocery shopping.
Because CLL affects cells in the immune system, people with this form of cancer are especially at risk of developing severe infections. Keeping their house clean, helping with basic hygiene, and practicing good food safety can all help reduce the likelihood that your loved one will get an infection.
Navigating health insurance can be challenging, and people with CLL may need help from their loved ones to understand their coverage plan.
As a caregiver, you can also help by connecting them with resources to help with out-of-pocket costs and determining the next steps in the event their claim is denied, according to the
You can also ensure they have any necessary legal documentation completed early, such as an advanced healthcare directive or power of attorney forms. It may be helpful to you to make copies of these documents for your own records as well.
Caring for a loved one with cancer is challenging, both physically and emotionally. Just as you take care of your loved one, it’s important to take care of yourself. This will help you avoid burnout, stress, and potential health complications.
Take time for yourself to do the things you love and connect with friends and family. Set boundaries and clear expectations with your loved one about how you can and cannot help.
It may be helpful to recruit other family members, friends, or even professional services to take on certain tasks such as housework or transportation.
People with CLL are especially at risk of infectious illnesses. This is because CLL affects the cells that fight off infections.
As someone caring for a person with CLL, it’s important that you stay healthy to avoid passing any viruses or bacteria to them. A condition that may be mild in a healthy person can have serious effects on someone with CLL.
The LLS recommends that those caring for a person with CLL get the annual flu shot and all other age-appropriate vaccinations.
When possible, try to avoid large crowds or close interactions with others who are not feeling well. Wearing a mask, especially indoors, and washing your hands frequently can also help prevent illness.
Depending on how much help your loved one needs, caregiving can quickly become a full-time job itself.
There are some legal protections in place to help people balance employment and caregiving.
If you need to take time off work to care for a loved one, talk with your human resource department or read online about your eligibility and potential options under the Family and Medical Leave Act.
In some cases, your employer may also offer employee assistance benefits or allow you to adjust your work schedule if needed.
Caregivers play an important and invaluable role in supporting people with CLL, and there are many ways that you can help a loved one navigate their cancer diagnosis.
If you are caring for someone with CLL, don’t forget to prioritize your own needs to ensure you continue to show up for your loved one with empathy, patience, and understanding.
Also remember that you are not alone, and there are resources available to help both you and your loved one with CLL.