Today I want to let you know about a new book for Alzheimer's caregivers that I wrote with neurologist Daniel C. Potts, MD, FAAN. It's entitled Finding Joy in Alzheimer's: New Hope for Caregivers, and has a foreword by Maria Shriver, whose father, Sargent Shriver, had the disease.
The majority of books on dementia are filled with information about the painful problems Alzheimer's caregivers face, but this one focuses on the joy one can have when interacting with loved ones living with dementia. And hope is exactly what if offers.
This volume will give you hope in the midst of the darkness of Alzheimer's. Our premise is that if you can come to terms with your loved one's condition, you can free yourself to experience joy during your interactions. There are also many stories, drawn from our personal experience, that narrate our own joyous interactions with our loved ones.
Ms. Shriver writes in the Foreword:
Unlike most books on the topic, which focus on the difficulties of caring for those with the illness, Finding Joy in Alzheimer's: New Hope for Caregivers shines a light on the uplifting and inspiring moments you can experience and share while caring for someone and navigating this mind-blowing disease.
The book is divided into three parts. Part I covers a variety of issues, such as our belief that people with Alzheimer's can still enjoy life, how to overcome the devil called 'denial,' and five especially difficult situations to accept. The latter are 1) when it's time to move your loved one to a facility, 2) when your loved one doesn't recognize you anymore, 3) if the person loses the ability to talk, 4) what to do if the person finds a new love (as did the husband of Supreme Court Justice Sandra Day O'Connor,) and 5) when it's time to engage hospice services.
Hospice is especially difficult due to caregivers' tendency to feel like in beginning hospice care they are signing their loved one's death warrant. However, as illustrated in the book, hospice can greatly improve the last days of the person as well as those of the caregiver. We share the positive aspects of hospice care.
The book also covers an important step in coming to terms with the illness, namely, the role of grief on the journey to acceptance. You must experience the grief that accompanies the illness before you can truly let go of the person and accept that person just as they are now.
Finally there is a discussion about letting go of resentment through making peace with God in for the reality that your loved one has developed Alzheimer's.
In Part II we provide 55 helpful tips for visiting (and for interacting in general) with people who have Alzheimer's. These are divided into verbal tips and non-verbal ones.
Part III consists of the numerous short stories illustrating our own joyous interactions with our loved ones. The stories will warm your heart and light your way along the path to achieving true joy. Dr. Potts writes about interactions with his father, Lester Potts; I write about my visits to Edward Theodoru, PhD, my Romanian partner of 30 years.
I also include stories about "My Ladies." These are several women I volunteer to visit weekly at Brookdale Senior Living's wonderful Clare Bridge, a memory care facility in Overland Park, Kansas. All of the stories about these visits show the possibilities for experiencing joy from interactions with people who have Alzheimer's.
Ms. Shriver concludes by stating:
I have hope that we will one day find a cure and wipe out Alzheimer's. But, until then, it is books like this, offering hope, guidance and community that will help us all to navigate the ever-shifting tides that accompany an Alzheimer's diagnosis -- for the patients, families and caretakers. Hats off to Marie and Daniel for tackling this much-needed topic.
The book, just published by Joseph Peterson Books, is available in paperback and Kindle version. Both can be purchased on Amazon.com.
Marie Marley is the author of Come Back Early Today: A Memoir of Love, Alzheimer's and Joy and the co-author of Finding Joy in Alzheimer's: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer's caregivers.