Today, we are talking to Nancy Nicholson, LBSW, about Help! What Do I Do Now? Caring for Your Loved One With Alzheimer’s. I’ve talked about the book before.
First, let me say that I make no pretense of objectivity about this author and this book. Nancy is my baby sister, and I believe she’s just about perfect, so please pardon my big sister’s pride. I think you’ll agree that it’s justified after you read the interview. And, of course, Nancy had a great editor (she said modestly). I am even the publisher of Help! What Do I Do Now?, so naturally I think it’s great. More than any of that, though, in my experience as a caregiver I have been in the position of asking Help! What do I do now?, and I find the information in this guide extremely helpful.
Lillie: Thank you for visiting A Writer’s Words, An Editor’s Eye today, Nancy. Please tell my readers a little about your background. What qualifies you to write a guide for Alzheimer’s caregivers?
Nancy: The first thing that qualifies me is that I’ve been a caregiver myself. When my father was diagnosed with Alzheimer’s in 1988, I—and no one in our family—had ever even heard of the disease. We had to learn a lot very quickly, and mostly we learned by trial and error. My caregiving experience motivated me to go back to college to earn my social work degree and work with Alzheimer’s patients as a career. I’ve worked in nursing homes, and now I’m a social service consultant to nursing homes. Serving as a facilitator for an Alzheimer’s support group taught me a lot through the discussions with other caregivers. So while I have a degree in social work and professional work with Alzheimer’s patients, perhaps my personal experiences and the experiences shared by other caregivers are my most valuable qualifications.
Lillie: This book has been a long time in development. Tell us how it got started and how it eventually ended up being published.
Nancy: It actually got started as an assignment for my technical writing class in college. We had to pick a subject that interested us and write an educational pamphlet on it. Tips for caregivers seemed like a logical choice for me because I was so interested in helping patients and those who care for them. My big sister kept bugging me and bugging me and bugging me to publish it. As my professional work evolved to include more teaching, I began to understand how little most people know, even people who work with Alzheimer’s patients. Interviewing caregivers who could no longer cope and who brought their loved one to the nursing home showed me the struggles and frustration they went through. In many cases, they didn’t know how to deal with the behaviors and challenges, so they resorted to methods that only made the situation worse. They had the best intentions and the desire to provide excellent care for their loved one, but they didn’t have the knowledge of how to do that. The recognition of the huge need caregivers have for simple, basic information coupled with Lillie’s nagging finally convinced me to expand the pamphlet and make it available for others to use.
Lillie: I plead guilty to the bugging and nagging, and I’m so glad you finally listened. Now, who is the target audience for this book?
Nancy: The target audience is primary caregivers for people with Alzheimer’s. The secondary audience is other family members and friends who may help with caregiving occasionally or who may simply not know to deal with the patient in normal everyday contacts. Our neighbors, who had been very close friends with my parents for years, came to visit when Dad was in the early stages of AD. He could still communicate, but not quite as easily as before. This couple sat in the living room talking to Mom and me—totally ignoring Dad, who was sitting beside them. That was the last time these friends ever visited, and I realize now it was because they had no idea how to communicate with Dad or how to act around him. My goal is to help other people continue to maintain a loving relationship with the person as the disease progresses. In fact, we’re offering a discount on orders of 10 books or more to encourage families to give a copy to every member. Support groups can also join together to get the discount.
Lillie: Help! What Do I Do Now might be better described as a booklet rather than a book as it’s only 86 pages long. Why did you make it so short?
Nancy: Caregivers for Alzheimer’s don’t have time to sit and read a long book. I felt they needed something they could pick up and read in a short amount of time. And it’s organized in such a way that they can easily refer to a particular topic when they encounter a specific situation. They don’t have to read the entire book—just the sections that apply to them as they have the need.
Lillie: What do you want readers to come away with after reading the book?
Nancy: I want them to come away with some techniques and resources to help them to deal with the difficult situation. Even more than that, I want them to realize there a lot of other people who are facing the same challenges they are—they aren’t all alone. Hopefully, they will realize that though it is a difficult journey, there are many positive and uplifting moments.
Lillie: The book includes a lot of scenarios of specific situations caregivers may encounter. Are those based on real people and real experiences? Why did you put them in the book?
Nancy: They are composites of real situations and real people from my own experience and from stories I heard in the support group. The scenarios are all common situations that I’ve heard repeatedly. I think most people can relate to specific examples better than abstract theories. Even if the caregiver doesn’t face the exact situation, a scenario can spark an idea that will work for a real challenge the caregiver encounters.
Lillie: What do you think is the biggest challenge for caregivers and even other people who come in contact with patients with Alzheimer’s?
Nancy: That’s a tough question—there are so many challenges. I often say that the patient is like a two-year-old in an adult body. You face many of the same behaviors as the terrible twos, but you can’t pick the person up and put them in a secure place. Emotionally, it is very difficult to watch someone you love change from the person they were to someone else. Frequently it seems that the person is simply being difficult, because there doesn’t seem to be any reason for the way he acts. The erratic nature of the disease is hard to deal with—from day to day, you don’t know what you’re going to get. Especially in the earlier stages, he may seem perfectly fine one day and totally confused the next. There’s often a guilt feeling on the part of the caregiver, who feels responsible and wants to care for their loved one, but can’t always provide everything the patient needs. Physically, just keeping up with the person and watching him and providing physical care is very challenging. So it’s difficult both emotionally and physically.
Lillie: Where can readers learn more about you and your book?
Nancy: They can visit my Web site. It has information about me and the book, and I plan to start blogging soon. They can also find the book, both paperback and Kindle, at Amazon.com
And, as mentioned earlier, families and support groups can order 10 copies or more at a discount.
Lillie: I know you love to work directly with caregivers and others affected by Alzheimer’s disease. Are you available to speak to AD support groups or other organizations? If so, how can people contact you?
Nancy: Sure, I’m always glad to talk with caregivers. There’s a contact form on my website they can complete and I’ll get in touch with them to make arrangements.
Lillie: Is there anything else you’d like to share that I haven’t asked?
Nancy: If you know an Alzheimer’s caregiver, this book will be a perfect Christmas stocking stuffer.
Lillie: They’ll use it and appreciate it, possibly for years. Thank you for stopping by and telling my readers about your book. I’m sure I didn’t ask everything my readers want to know. Will you check in later to answer questions?
Nancy: Absolutely! I’ll come back periodically and respond to your readers’ comments. Thank you so much for interviewing me.
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Nancy Nicholson traveled a circuitous route to her present position as a licensed social worker. She dropped out of college to go to work and spent years in a variety of careers, including nurse’s aide, career counselor, and operations manager of an interior landscape company. When her father was diagnosed with Alzheimer’s disease, she became one of several family caregivers. She watched her father deteriorate from a highly intelligent, strong, and independent man to a body lying in a nursing home bed, not recognizing anyone and unable to control his bodily functions. She also saw the toll the disease took on her mother, the primary caregiver, and the other family caregivers. What she saw made such an impact on her that she decided to return to college and devote her life to caring for the elderly, particularly patients with dementia. She graduated from Texas A&M International University with the degree Bachelor of Social Work and earned her license as a Licensed Bachelor Social Worker. For the past seven years, she has worked for a chain of nursing homes, first as a social worker in a facility and currently as a social services consultant, where one of her primary duties is training nursing home staff.