Brain Cancer: Five Suggestions for Compassionate Caregiving

Stan Goldberg, PhD

The death of Beau Biden resurrected memories of caring for my brother-in-law who had a form of brain cancer called Glioblastoma. My wife, two adult children and I took turns flying across the country to provide him with physical and emotional support.  In this article, I suggest five of many things you can do to ease the path on which a friend or a loved one is traveling.

More extensive suggestions not only for Glioblastoma, but other forms of cancer can be found in my ebook, “I Have Cancer”: 48 Things To Do When You Hear Those Words, my website articles, and Lessons for the Living, my memoir as a bedside hospice volunteer.  The suggestions in this article and all of my other publications are based on what worked and what didn’t. I hope you’ll find them useful.

1. Revealing the Brain Cancer Prognosis: Put Your Preferences Aside

An eminent neurosurgeon at Johns Hopkins told my family the average length of life following a Glioblastoma diagnosis is approximately 18 months. It was information he gave to us but not to my brother-in-law. The surgeon’s explanation for not revealing the prognosis to him was “People live longer not knowing.” It is an assumption that I questioned then and still do.

Be aware of the person’s willingness to accept death if you are in a position of revealing the prognosis. Although I thought my brother-in-law should know the prognosis to prepare for his death, the rest of the family disagreed.

I was basing my opinion on what I would want, rather than what my brother-in-law needed. My wife knew him better than I, and her decision not to immediately reveal the prognosis proved to be correct. By waiting he became more open to discussing end of life issues and accepting his death.

2. Hope: What It Means to Each Person

We all hope for the best regardless of the improbably of some good things happening. We often hope because we’re not ready to accept the reality of a terrible outcome. My brother-in-law’s prognosis resulted in three types of hope. I hoped to ease his death. My wife and other family members hoped he would be with us as long as possible. My brother-in-law hoped for a miracle cure.Hope says more about our needs than the reality of a prognosis.

When a family member or the person with the prognosis expresses hope, try to understand what’s behind the wish before classifying it as rational or unrealistic.

3. Preparation: Understand How Cognition, Emotions, and Motor Abilities Will Change

As cancer spreads, it can affect cognition, emotions, and physical abilities. My brother-in-law’s cancer affected areas of the brain that controlled all three. We learned about the likely progression of his decline in advance of when it occurred. Knowledge reduced the shock of his deterioration as the cancer progressed. The more you know about the changes the easier it will be to accept.

4. Talking About End of Life Issues: Don’t Initiate But Don’t Avoid

I was a bedside hospice volunteer for eight years and never initiated conversations about dying. I waited until my patients wanted to talk about it. Ninety percent of them did when they were ready.

I’ve found most people who are dying are aware of it whether or not they know the prognosis. The desire to talk about death for some occurs soon after the diagnosis. For others not until days or weeks before they die. When your friend or loved one is ready to talk, listen. Don’t try to change their heart-felt need by saying something like, “Don’t worry, you’re not close to dying,” or “Let’s not talk about that now,” or “Let’s hope for the best.” Whenever they want to talk about their death, is the right time.

5. The Moment of Death: Don’t be Afraid of It

I was at the bedside of my brother-in-law and many hospice patients as they died. None of the experiences was frightening. Each was unique and spiritual. Help prepare friends or loved ones for their death, and stay with them as they leave. You’ll not only provide them with a final gift, but you will also create wonderful memories you’ll cherish throughout your life.

I value feedback on my articles and respond to each comment.

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Preventing Senior Moments, by Stan Goldberg

Offers practical and achievable prevention strategies for senior moments.


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