Caring for Someone with Chronic Lymphocytic Leukemia

Author
Select Justice
October 20, 2021

Finding out that a loved one has cancer is extremely devastating. Most people don’t prepare to become a cancer caregiver for their loved one because it’s something we all hope never happens. Nonetheless, over 18 million people were diagnosed with cancer in 2018 alone. 

If your loved one is diagnosed with Chronic Lymphocytic Leukemia (CLL), you may be thrust into the caregiver role overnight. According to the American Cancer Society, “Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults. It's a type of cancer that starts in cells that become certain white blood cells (called lymphocytes) in the bone marrow. The cancer (leukemia) cells start in the bone marrow but then go into the blood.” What happens is people with CLL make too many white blood cells that don’t function properly and these eventually crowd out the healthy white blood cells. 

Over time cancer cells in people with CLL spread, often to the lymph nodes, liver, and spleen. Often, CLL progresses slowly, and 86% of people live for at least five years after diagnosis. This means that as a caregiver, you have a long road ahead. 

What It’s like to Have Chronic Lymphocytic Leukemia

To care for someone with CLL, it’s helpful to know what to expect as well as how they may be feeling. CLL is typically a slowly progressing cancer, meaning that people often live many years after their diagnosis. Some may choose to dive right into treatments while others may take a more conservative approach. Treatment options for CLL include: 

  • Chemotherapy
  • Targeted therapy
  • Radiation therapy
  • Monoclonal antibodies
  • Stem cell transplant
  • Leukapheresis
  • Surgery

In addition to undergoing treatments, people with CLL will have appointments with many different specialists. These may include a hematologist as well as various types of oncologists: radiation, medical, and surgical oncologists. Additionally, they will have appointments for labs and tests such as blood draws and CT scans. 

Chronic Lymphocytic Leukemia

People with CLL might experience nausea, vomiting, and fatigue. It’s also very normal for them to experience a lot of anxiety, stress, and even depression as they come to terms with their diagnosis. 

What to Do for Someone with CLL

Caring for someone with CLL will likely look different during different stages of their illness. This is why it’s so important to keep an open line of communication with them and to never assume you know what they need. Make it a point to ask questions like “how can I help?” or “what do you need today?” Some days they might want to schedule their own appointments and go for a walk, while others they might want to lie in bed while you take care of their needs. This is completely normal to have ups and downs and changes in needs. 

On a regular basis, you might find yourself doing housework, making food, keeping track of medications, creating and managing a schedule, attending appointments, communicating with providers, and more. It’s also important to try to keep up morale for both you and your loved one. As much as possible, keep up with regular routines and try to find things to look forward to. 

As you care for your loved one, try to help them eat a balanced diet that will fuel their body. It’s also very important for them to stay hydrated, particularly if they are vomiting. When they don’t have much of an appetite, they may need meal replacement shakes. 

Watch for signs that your loved one may need to go to the emergency room. These may include: 

  • Loss of consciousness
  • Fever
  • New or worsening pain
  • Abnormal bleeding
  • Uncontrollable vomiting
  • Signs of dehydration
  • New or worsening symptoms
  • Signs of an infection 

A simple illness can be more severe in someone with CLL than in an average person, which makes seeking immediate care for signs of illness a top priority. Because it’s important to keep your loved one healthy, you should stay up to date on your own vaccines and find a different caregiver to take over if you get sick. 

How to Take Care of Yourself as a Caregiver for Someone with CLL

CLL can be a long-fought illness, so it’s incredibly important to put yourself first so you can be a good caregiver. As the old saying goes, you can’t pour from an empty cup. Here are some ways you can take care of yourself as a caregiver: 

  • Keep up with your own hobbies
  • Spend time away
  • Find a support group
  • See a therapist
  • Get other help where you can 
  • Take time off work (you may be eligible for the Family and Medical Leave Act FMLA)
  • Eat a healthy diet
  • Reduce stress where possible
  • Exercise
  • Don’t overextend yourself
  • Practice self-compassion
  • Get enough sleep

Photo: https://www.shutterstock.com/image-photo/sports-activity-fitness-weight-loss-concept-1348206365

Of course, there will be times you become stressed and overwhelmed while caring for your loved one. The more you can take care of yourself first, the better equipped you’ll be to handle these situations. Ultimately, practicing self-care will make both you and your loved one happier. 

What to Do If your Loved One Has CLL

One of the most beneficial and important things you can do for your loved one is simply be there. Life changes after a cancer diagnosis, and navigating what to do next is hard. 

It’s also very normal for people to feel anger and resentment after being diagnosed with CLL, particularly if they think they know why they developed the cancer. Cases of CLL have been linked to the popular weed killer Roundup, and many people have sought justice for their diagnosis. If your loved one feels this way, you can help them find a Roundup cancer lawyer to see if they are eligible to file a lawsuit.  

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We are here to help you and loved ones advocate for justice. Feel free to send us any questions you might have, either about an injury or the process for pursuing justice so we can help you exercise your rights.

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