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Caregivers and End-Stage Cancer

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Last week’s blog about the will to survive Stage IV cancer resonated with many of you. The desire to see our children grow up, as well as our curiosity about what lies around the bend, are powerful adjuncts to cancer treatment. For those who have or have had cancer, have you ever thought about how an “I’ll do anything” to hold onto the reins of life may affect your caregivers? I’m hesitant to mention this topic, but because it’s another important elephant in the room no one talks about, here goes…

Cancer caregivers are encouraged to take good care of themselves: eat properly, exercise, get plenty of sleep and take a break now and then. On the flip side, caregivers are often criticized if they’re perceived to be having a “good time” while their loved one is suffering or dying, or after their loved one dies.

Last week I mentioned my visit with Alana Stewart, friend and caregiver to a seriously ill Farrah Fawcett. In my opinion, Alana’s friendship knows no bounds. All you have to do is read her daily journal from that time, My Journey with Farrah, and you’ll see a woman who literally gave up her life, for nearly three years, to be by Farrah’s side.

During one of their numerous trips to Germany for Farrah’s treatments, at Farrah’s urging, Alana, a single unattached woman, began a relationship with an Italian man. Based on much of the criticism Alana received when her book was released, you would have thought she’d hogtied and bull-whipped Mother Theresa. People called her selfish and in general, unloaded on her because she dared to reenter the world of the living while her Stage IV friend lay suffering in a German hospital.

If you’ve ever been a Stage IV caregiver, particularly an end-stage caregiver, and I have, then you know that life as you know it can vanish in a blink. Caregivers find themselves walking a fine, and sometimes lonely line between life and death. Being an end-stage caregiver is physically, mentally and emotionally exhausting. Days are often spent waiting to hear from doctors or the results of the latest scans; getting something to make your loved one more comfortable or just watching them breathe. There’s little time to go out for a sandwich or to stand in the sun, and if you do, it feels surreal to be in the land of the living, and it often makes you feel guilty. It’s difficult to remain cheerful, positive and in control of yourself and the situation. Your thoughts can run the gambit from wondering, “How will I make it when they’re gone?” or “How much longer will they live?” to “How much longer can I do this?” These feelings aren’t good, bad or selfish. They’re human.

My intent with this post is to let any Stage IV and end-stage caregivers, who can relate to any of these feelings, know they’re not alone. Coming to terms with the fact that we’re going to die is a brave, solitary experience. For end-stage caregivers, the loss of a loved one is a process that goes on long after their family member is gone.

Is holding on to the reins of life, at all costs, a natural part of the will to live? Should we consider our caregivers before we tighten the grips on the reigns, and if so, does this mean we’re not survivors? I don’t know all the answers, but I felt compelled to ask the questions.