By Marty Richards
Woodstock, Vermont : Skylight Paths Publishing, 2010
ISBN-13: 978-1-59473-286-7 (quality pbk.)
Although this book is not specifically about Huntington's Disease, I believe it is a wonderful resource for anyone who is caring for someone with HD. The titles of the individual chapters give you a good idea of what the book is about:
The tone of this book is gentle and supportive - for both the caregiver and the care receiver. As the title suggests, the emphasis is on the importance of sharing between the one giving care and the one receiving care. Each chapter includes stories from the author's personal or professional life, as well as very practical suggestions of how to deal with difficulties that may be encountered with each topic.
Spirituality is an important part of this book, but never in a preachy way. The author makes a distinction between religion and spiritual, which "although it may be included as part of religion, has broader connotations. Spirituality may help us ponder questions about life's meaning and purpose, and find guidance in life's difficult choices." Her background is Christian, but she shares that she has also come to appreciate spiritual wisdom in beliefs different from her own, many of which are reflected in the examples and practical suggestions that she gives.
I wrote down several things that I wanted to remember as I was reading this book. In the chapter on sharing grief, she says that "If you are caring for someone who has Alzheimer's, you and your care partner may experience pre-loss grieving about the massive changes that will inevitably come and the resulting loss of relationship ahead, as memory loss becomes more and more acute. Some people have called living with Alzheimer's a "funeral with no ending." As each of you tries to cope with the present, you are already grieving the next effects of the illness." This is also very true for Huntington's Disease, especially since many people with HD have watched one of their parents' deterioration, so they know what is in store for them.
Later in that same chapter, she says, "Your permission to fully grieve their losses may be one of the greatest gifts you can give them, even though it may be a very difficult experience for you. Remember: Though you will be losing the person as you have known them, they are losing everything." She also emphasizes how important it is for caregivers to have someone, other than their care partner, to support them in their own grief.
The author never claims to know all the answers and she always leaves room for individual differences. In the chapter on hope, for example, she says, "In the pages that follow, I will offer many practical suggestions for your journey of hope. Some will resonate with you; others may have little relevance to you. Use what seems to apply to your situation and leave the rest, remembering as you read that hope is a one-step-at-a-time process in the circumstances you face."
In closing, the author says, "As we have journeyed together through the pages of this book, we have touched on many facets of caresharing. I hope you have been able to take in the message that you are not alone on this path. You and your care partner have much to share in a relationship of love and respect. To know that you are with someone who is a kind and compassionate person is an incredible gift that you can both give and receive."
I highly recommend this book for anyone who is in a caresharing relationship, whether you are dealing with Huntington's Disease or some other illness or disability. Copies can be purchased from amazon.com or from the author's website at:
Created and maintained by Renette Davis. Send comments to her by clicking here.
Created: Aug. 25, 2011
Last updated: Aug. 26, 2011