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CLL and Caretaking

This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.

 By Claudia Filippino – patient

Did you know that your loved one is no longer ‘one’? Caring for a family member who has been diagnosed with CLL is like taking care of three individuals. ‘How is that’, someone would think; including the member with the diagnosis. Actually, for all parties involved, remaining cognizant of this fact can make future care taking simpler. So, who are these other two ‘individuals’? They are the silent, unseen participants that now live within your loved one; they are anxiety and fatigue. This article will offer some insights into the specifics of anxiety and fatigue for an individual with CLL.

Most reading this article have memories of the initial diagnosis, attempted steps of learning more, and evidence that the diagnosis was one that caused sometimes rapid intense fatigue, vague constant fatigue, as well as a worry of what does the future bring with the diagnosis and the treatment? Articulating these new forever companions of the individual with CLL are often difficult for one self, let alone for family members. ‘I’m too tired, why don’t you go without me’ and ‘what will my numbers be’ are frequent comments that family hears and lives with. It is not just the individual with CLL, the entire family is affected. Although members do not have the actual diagnosis, the ‘loss’ of their loved one due to symptoms, increased interaction with the medical world, and need to heed to the symptoms rather than the desires or daily tasks of family, take precedence for each.

Anticipatory Anxiety

This type of anxiety is a normal part of life that is experienced by everyone at different degrees. How many of us have prepared for the holidays with the ‘worry’ of ‘what gift to give, will the person arrive safely to the dinner, did I prepare enough food’ type of thinking and questions. Anticipating the future outcome is simply part of life. For the CLL patient, this type of anticipation changes. This type of ‘worry’ is not a happy anxiety so to say but a concerned and potentially fearful one. For those who have cancer at a specific site, is a contained image. For the CLL patient, blood is everywhere and reaches every organ of their body. Where is ‘it’ now? What will my lab values say? What will this treatment accomplish? These worries or anxiety are the overarching ones. The ‘lesser’ ones include questions that may include participation with other family members. An example of this would be, ‘will I have enough energy to go to that event that day, what if I have to cancel because of the fatigue, my spouse loves to do these things and it is just too much for me’. There are ways that this type of anxiety can be recognized, discussed, and mitigated.

Fatigue

Cancer-related fatigue (CRF) according to the specialists, is a persistent feeling of physical or emotional exhaustion related to cancer or cancer treatment. This type of fatigue interferes with an individual’s moods, outlook, ability to complete daily tasks and enjoy life. The pattern of this type of fatigue is unpredictable is not often relieved by sleep or rest. This fatigue is often more severe than that of a healthy person’s sense of fatigue or tired and is out of proportion to a person’s level of exertion.1 The person with CLL will have to rest more frequently and may find themselves avoiding family functions and activities as they are unable to ‘keep up’ with the rest. The individual with CLL may often feel they are disappointing their loved ones by not participating as frequently in activities or events enjoyed by others. The fatigue is often evident, the ability to communicate their disappointment about it and how it affects others is often a bit more difficult.

This mixture of fatigue and anxiety is often a strange brew. Anxiety usually causes a restlessness, nervousness, hard to sit down or think clearly. On the other hand, fatigue slows ones thinking and movements. Have any one of you said or heard the expression, ‘I’m so tired, I can’t sleep’? This is what it is many times with those diagnosed, so tired yet can’t sleep. They could sleep so to speak, but the over riding concern of the diagnosis also impregnates the person with a constant hyper-vigilance of ‘what is next’.

There are many resources to help understand and cope with the anxiety that comes with this diagnosis. Support groups or seeking out professional behavioral help is one. With the fatigue, learning to rest and listening to what your body is telling you is another. The technique I now offer is a simple form of communication to help family members discuss and resolve issues around their new ‘companions’.  My suggestion is for the individual with CLL to find two objects; stuffed animals, colored Nerf balls, whatever makes sense and have these available in your home. These two objects (preferably two different colors) represent or ‘externalize’ these new companions that now live with those with CLL. These are your ‘communicators,’ rather than your loved one having to figure out if your tired or if your worried. Once the person with CLL can identify the fatigue or the worry, they simply pull out the object, put it in the place (a basket, on the table) decided upon by the family. Once the object is placed, family members now know what their next step is as previously discussed and decided upon by the CLL survivor and family. Fatigue often means, ‘I need to rest or sleep, please don’t expect me to go’. Anxiety may mean, ‘I’m worried, please stay with me’ or ‘I’m worried, let me be alone for awhile and then I’ll get back into the swing of the family’. This technique is often used with children who are unable to articulate their feelings into words. Many times, with adults with CLL and for their caregivers it is similar to children, it’s just hard to put things into words.

1Leukimia & Lymphoma Society: Cancer-Related Fatigue Facts.  FS3, October 2016. Pg.1


Claudia wanted to be a nurse at three when she was given a toy stethoscope. She accomplished her dream and became an RN. As the years progressed in her profession, she noted her sensitivity not only to the ‘patient’ but to the family and caretakers. This led her to work her way through school and obtain a Masters in holistic studies and on to a Masters and PhD in Marriage and Family Therapy.. She is dually licensed as a registered nurse and family therapist. Her work was a calling, not a job. Claudia was diagnosed in 2017 with CLL. Her first thought was, ‘how can I help others with this’ and brighten the day for any professional caretakers I now come across with this diagnosis.

Originally published in The CLL Tribune Q1 2019.