What inspired you to write Take Your Oxygen First?

There were so many sources of inspiration for writing Take Your Oxygen First, but the one closest to my heart was the experience of taking care of my mom that so deeply affected me and everyone in my family. Caregiving for a loved one with Alzheimer’s disease is a very complicated undertaking—even in my family, where my Dad, my sister and brother and everyone else had special strengths they could offer in dealing with the disease—and it’s one of the most physically, emotionally and spiritually draining experiences one can ever have. We all learned the hard way that you can only give the best of care to someone you love when you keep yourself physically fit, emotionally prepared and spiritually whole. I knew that what we were offering in Take Your Oxygen First had value after spending so much time with the guests of Leeza’s Place, the community centers we have created where families taking care of a loved one with a memory disorder come to get information, support and “recharge their batteries.” The more time I spent visiting with our caregivers, the more I knew we had to encourage them to give themselves permission to be at the top of their list. Throughout the process, I took inspiration from my Mom. When she got her diagnosis, she asked that my family and I promise to help all of the other caregivers out there to get informed about this disease for the long road ahead. And I think Take Your Oxygen First is a good first step in keeping our promise to Mom.

When your mother Gloria Jean Dyson was diagnosed with Alzheimer’s disease, she was very aware of the challenges that your family would face as caregivers. How did your mother’s awareness and your family’s willingness to discuss her diagnosis honestly help with the task of caregiving?

Mom’s willingness to face her disease head on was the greatest gift she ever gave to my family. First, it allowed everyone to avoid the denial that so many families escape to when confronted by this terrible disease, the thinking that it is just a sign of old age or is something that will get better over time. Mom accepted the disease and forced us all to understand how sick she was, without ever giving up hope. It motivated us to understand the illness and seek out the best possible medical care we could find. It allowed us to find out how she wanted to be treated later, when she would not be physically able to tell us, and so enabled the family to all pull in the same direction, just as she would have wanted us to: we knew what we had to do. And most of all, it allowed everyone to be able to fully enjoy and treasure the time we had left together, as a family, with Mom as the center of it all. She taught us all a lot about courage and authenticity.

How did taking on the role of caregiver make you a stronger person?

Believe me: no one can be fully prepared for what is coming when one is taking care of a person with Alzheimer’s disease, no matter how much you plan for it. For most caregivers, I think the greatest fear is that you might not be doing all you can for your loved one. With this disease, the outcome is out of your hands, but your outlook is a daily choice. I learned that the present moment is our greatest teacher and that hope comes in unexpected ways through unpredictable people and places, but if you are open to joy it will find you even when you are losing someone you love. Mom always told me to just “do my best”. She would laugh and say, “That’s good enough for God and everybody”. It’s true. If you show up in your life with the intention to do your best, there are no regrets. All you can deliver is your best, then you have to let go of the rest. I have learned that energy, like time, is a finite resource. We are not invincible and we can’t always control situations and manage outcomes. I’ve learned it’s not the burden, it’s how you carry it and it’s always lighter when you reach out and share it with someone else. I have taken those lessons and applied them to every other aspect of my life, and I think it has helped me live with fewer regrets and given me more personal strength.

What are the most important steps that caregivers of loved ones with memory disorders should take to ensure they maintain a healthy lifestyle?

First, understand the disease. It is complicated and it is frightening, but understanding it allows one to move forward without the fear of the unknown: knowledge is power. Second, get help. This enemy is too strong to handle by yourself. Seek out family, friends, professionals and community organizations; they all can give the support and information you will need. Third, take care of yourself physically and emotionally. So many caregivers wind up getting sick themselves from the burden of giving care and, shockingly, many die before the person who needs them the most. Exercise, eat right, get plenty of rest, keep socially active, and get help to manage your anxiety, depression, and feelings of guilt. Finally, understand that while this is a time in one’s life of great sorrow, it can also be a time of great joy and renewal. It is a time that can bring you closer to your loved one and your family, and it is also an opportunity for great personal growth and understanding.

Why do you think so many caregivers are afraid to seek outside help?

From my own experience and from our work with our guests at Leeza’s Place, it seems to me that there are a couple of reasons: first, no one wants to believe that a loved one has such a terrible disease. In this country, the lack of understanding of Alzheimer’s disease is so prevalent and its effects so terrible that there continues to be a shame associated with the disease. It is easier to chalk its symptoms up to old age, to stress at work, or to other reasons, and to avoid seeking a diagnosis and early treatment. I think the other reason is that there is no cure, so those who understand the disease realize that the burden of giving care to a loved one with AD may last a decade or more, and often changes the lives of those affected by it completely. It is a great tragedy, since an early diagnosis and early treatment can make such difference in the quality of the life of the patient for many years.

Can you discuss the importance of the “Three E’s”: Education, Empowerment and Energy?

The Three E’s are the cornerstone of all we do at Leeza’s Place and the theme that underlies all of the advice we give in Take Your Oxygen First. In Take Your Oxygen First, my family and I tell the story of Mom’s illness and how we all dealt with learning the diagnosis, the roles each family member played in giving care to Mom, the mistakes we made but also how we learned so much about the disease, about each other and about ourselves. My wonderful co-authors, Drs. James Huysman and Rosemary Laird, use the stories of my family to illustrate our philosophy of caring for the caregiver that we call The Three E’s.

Simply put, we believe that all caregivers need Education about the disease they are facing, about how to reach out and get help, about the many ways in which a caregiver can better manage the illness, and about the need to nurture one’s physical, emotional and spiritual well-being so one can meet the challenges of caregiving. Knowledge frees us from unnecessary guilt, anger, anxiety and depression and gives us confidence to move forward. Education leads to the second E, Empowerment. Empowered caregivers have the strength to take responsibility for their own well-being and do something with their knowledge. Together, Education and Empowerment create Energy, the third E. Energy is the basis of life; it’s the means by which we all can live rich and fulfilling lives no matter what is thrown at us; without it you are unable to keep up, let alone find meaning and joy every day. By making the Three E’s part of your life, you can discover a richer experience for your loved one and yourself no matter what challenges you face.

What is the goal of Leeza’s Place and how can caregivers learn more about these community- based centers?

Leeza’s Place serves as an emotional oasis for caregivers who need a place to stop and take a breather from their busy lives, to figure out where they stand and where they are headed and as a place where caregivers can connect with the resources that are vital to the physical, emotional and spiritual support of their loved ones and themselves. Whether someone is new to the process and needs more information about their disorder, or is a “veteran” caregiver looking for a support group, at Leeza’s Place, specially trained “Leeza Care Advocates” help caregivers tap into the specific resources they need. Each Leeza’s Place provides current information about Alzheimer’s disease and other memory disorders including literature, video and audio tapes, CD’s, books and computer stations with Internet access. Leeza’s Place also offers workshops and classes in subjects ranging from Reiki therapy to the legal issues that arise out of a diagnosis of a memory loss disorder. Most locations offer Memory Screenings, which test memory, language skills, thinking ability, and other intellectual functions to encourage early diagnoses and early medical intervention for memory disorders. We have grown into a community that is much broader than Alzheimer’s disease and memory disorders. Now our guests include mother’s who have autistic kids, spouses with a loved one who has cancer, siblings dealing with Mom’s MS and everything in between.

When their loved ones have passed on, many caregivers frequently find it helpful to share their expertise and experiences with others facing similar situations. The Leeza’s Place Mentoring Program connects veteran caregivers with those new to the process. Those who are just beginning on their caregiving journey are blessed with the wisdom and understanding a mentor like this can bring. Each Leeza’s Place is partnered with a local community healthcare system that provides caregivers and their loved ones access to local health and support programs through voluntary organizations, religious groups, for profit, not-for-profit, and governmental agencies. Leeza’s Place was designed to ensure that others experiencing what my family encountered can get help for the journey ahead. For more information on Leeza’s Place, www.leezasplace.org is the place to start.

What message do you want readers to take away from your book?

If there is one thing I want our readers to take away from our book, it is our message of hope. For those who are just starting out on the journey of caring for a loved one, the future can seem very bleak. And for those already caught up in the tremendous burdens that are a part of this journey, seeing that light at the end of the tunnel can seem all but impossible. But by telling our family’s story, and with the advice given by my co-authors, I believe that Take Your Oxygen First can show caregivers that the act of giving care can actually be a life sustaining and empowering experience for them, for their families and for their loved one as well. You are not alone and with help you will find answers that can save your sanity and your serenity!