Books offer advice for people living with illness, and their caregivers

  • Most of us know a version of the saying that while we are busy planning our lives, life happens. We’re aware, at least as we mature, that our Plan A hasn’t happened and likely won’t. A version of Plan B may be happening, but again, it’s likely that even Plan B is different than what we thought it could be. That’s why life is an ever unfolding journey.


    We never know what’s around the corner other than that it likely means change. And generally, people who live with some sense of serenity are those who can best cope with change. Two new books illuminate the road for those of us going through tough times that often demand constant change. Both books are worth reading for the compassion, support and practical ideas they provide.

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    Living with brain disease

    In “Understanding with Compassion: Help of Loved Ones and Caregivers of a Brain Illness Patient,” by Joni James Aldrich and Neysa M. Peterson, RN, MS, you will meet two women who’ve undergone the struggle of caring for a loved one with brain disease such as cancer or Alzheimer’s. They’ve join forces to write a practical and inspirational guide for others.


    The authors take readers from the shock of reality, when signs of brain disease first become evident, through stages of living with the disease, and onward, including steps caregivers can use to help themselves heal from the exhausting, but often rewarding journey with their loved one.


    The book offers ways to cope with changes in personality, behavior, emotions and loss of social inhibitions that your loved one is likely to experience. The personal nature of each chapter gives the book authenticity and weight.

    The authors share the “if only” moments most caregivers experience. They share their triumphs and regrets, as well as practical advice about legal documents, home environment and relationship issues.


    In Aldrich’s introduction, she says poignantly, “If I had known what I know now, I could have changed to adapt to a different Gordon. I would have stopped more often and simply listened.”

    While Aldrich felt there wasn’t enough practical information to help her cope with the changes in her husband – and she aims in this book to fill in that gap for others – she also recognizes that she would have been, at times, less task oriented and more focused on the moment.


    Caregivers seek education and information so that we can be the best caregivers possible, but we also need to take time to love and admire the person as he or she is now – at this time. Our loved ones didn’t choose this disease that has change his or her personality.


    This doesn’t mean the caregiver should be ignored, however. Aldrich takes the reader through healing steps, and ends with this message: “Above all else, do not curl up and wither away. You are still alive.”

    “Understanding with Compassion,” is available at and on


    Living fully while dying

    In “Leaves Falling Gently: Living fully with serious and life-limiting illness, such as cancer or ALS (Amyotrophic lateral sclerosis or Lou Gehrig’s disease) through mindfulness, compassion and connectedness,” author Susan Bauer-Wu, PhD, RN  presents a plan that can help people live their life fully, while knowing they are in the process of dying.


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    She offers coaching on living mindfully – not a bad idea for any of us, since none of us knows how long we’ll be around to enjoy this process of living. Bauer-Wu heads the mindfulness chapter with a quote from Matthieu Ricard:

    “The quality of our experience, moment by moment, will determine the quality of our lives.”

    Most of us expect that our deaths will come after a long life of accomplishing the stuff of life, whether or not the degree of accomplishment is as satisfactory as we’d like it to have been. However, many of us get a terminal diagnosis many years before we’ve gotten to that point. We learn we have a life limiting disease, and are left feeling frustrated and cheated of our time.


    “Leaves Falling Gently” is divided into three parts: “Mindfulness,” “Compassion,” and Connectedness.” The chapters lead the reader through the gathering of information onward through practical exercises to enhance living.


    Many studies have shown that meditation, and looking inward in a healthy – not obsessive – manner, can lower blood pressure and even help conventional medicine be work more effectively. Some of the practices taught in “Leaves Falling,” could help many of us who are not threatened by a terminal disease – yet.


    However, this book can help people who are living with a terminal diagnosis actually live and enjoy the life they have left to the fullest extent possible, as opposed to just existing unto death. Bauer-Wu’s insights are worth a reader’s time, no matter what “plan” your life has followed.


    “Leaves Falling” can be purchased at or on


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Published On: September 05, 2011