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What You Should Know as a CLL Caregiver

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Howard Massey - CLL Society

By Howard Massey – Caregiver
In March of 2006, my wife Barbara received a phone call telling her that she had been diagnosed with a disease that neither of us had ever heard of – CLL. The doctor’s explanation of this blood cancer included the frightening words “leukemia” and “incurable.” That got our full attention immediately! Barbara was feeling fine, but it turned out that she would need treatment for her CLL within 6 months. So with a phone call, Barbara had become a cancer patient and I had become a caregiver.

I have been Barbara’s CLL caregiver for many years. I have also been fortunate to meet many other CLL patients and CLL caregivers during those years. Through my own experience and by knowing other caregivers, I have learned that there are some key elements to being a good caregiver.

These are not in any order of importance, for they all have an impact.

Listener/Sounding Board

Most caregivers make themselves available to listen to their favorite CLLer. Asking questions about treatment and/or getting frequent updates as to what is going on is very important. Just being there to listen, share ideas, etc. is critical. Your partner may want to discuss the pros and cons of the next possible treatment with you. He/she may have concerns and/or anxiety about possible side effects, whether or not the treatment will work, etc. Active listening is important!

Anticipation and Participation

Caregivers usually try to anticipate what the patient’s needs are, but asking “How can I help?” is even more important. There are many practical things that a caregiver may be called upon to do. Caregivers often drive or accompany the patient to doctors’ appointments and/or treatments. They might offer to run an errand or prepare a meal, just to make the day run a little more smoothly. Often it’s the little everyday things a caregiver does that make this CLL journey less difficult.

Many caregivers accompany their loved one to their medical appointments and infusions. A caregiver can act as a second set of ears, since many medical terms that CLL experts use are unfamiliar to most of us. And of course it is an excellent idea to use a cell phone or digital recorder to record the doctor’s comments. Recording the appointment is particularly important if a possible future treatment is being discussed.

CLL Support Groups

I have found that involvement in a CLL Support Group is really helpful as a caregiver. I have met dozens of CLL patients and caregivers over the years, and I have learned a lot from all of them.

Being a member of our local CLL support group has afforded me the opportunity to see many different types of caregiving. Since every CLL case is different, sometimes the type and amount of caregiving is different.

  • Some caregivers are very hands on and want to know as much about CLL as the patient. They are always studying, always involved, always learning. They are always asking questions.
  • Some caregivers find that their loved one will require zero treatment for many years. These caregivers adopt the same watch and wait as the patient, but are still very supportive. They try to remain in the loop, so that they know what the best treatment options are right now. What are the best options coming up? Information is very powerful, and will help the patient make the right decision when the time comes.
  • Some patients have no desire to talk about their CLL and try not to even think about CLL. That patient’s caregiver’s role may become one of silent support. The caregiver may want to continue to learn about CLL, gather information, and hope to be ready when more active support is needed.
  • Once in a while the patient may become so ill or anxious that the caregiver’s role is to take over in terms of talking with the doctor, asking questions, and becoming a strong advocate for their loved one. Most important of all, it is the caregiver’s job to make sure, along with the patient’s doctor,that the treatment is on the right track.
  • Occasionally a CLL patient may need to go into the hospital. The caregiver must be ever vigilant to make sure the treatment and care is what is prescribed. The caregiver should be there as much as possible to ensure excellent care, i.e. right meds, attentive nursing care etc.

In the final analysis, being a caregiver is one of the most important and rewarding things you can do for a CLL patient. Usually, the more involved you can be the better. Like most challenges in life, we travel this CLL journey much better together than we do alone.

I became a CLL caregiver in 2006 when my wife Barbara shocked me with the news that she most likely had CLL. It was hard to believe, since she seemed to be perfectly healthy. We quickly went online, seeking more information about CLL, and we learned as much as we could. We actually learned a lot, most importantly to find a CLL expert to oversee and treat Barbara’s CLL. We took this advice to heart, and finding a CLL expert was the first proactive thing that we did. Through CLL internet forums and message boards Barbara met other CLLers online. This eventually led to our finding and joining a local CLL support group in 2008. Several years later we continue to enjoy and benefit greatly from being part of this group.

Originally published in The CLL Tribune Q4 2016.