As an experienced geriatrician with many years of seeing dementia patients and their families, I thought I understood not only dementia, but of the impact of the disease on family caregivers. So, I was taken aback when the daughter of one of my patients asked me to read the manuscript of a book she had written about her journey with her mother who had Alzheimer’s disease. I realized that, although I knew the medicine, I didn’t understand how difficult caring for someone who had Alzheimer’s disease really was.
Later, this same daughter, Anne P. Hill, was diagnosed and treated for breast cancer. After her mother died, we met for coffee and she asked me why she never received any kind of resource book to guide her as a caregiver through her mother’s 10-year dementia journey.
“When I was diagnosed with breast cancer,” she said, “I was given a notebook by every doctor that treated me about what to expect and how to cope.” She went on, “But you never gave me anything to help me with my mom who had Alzheimer’s disease.” I was embarrassed, because she was right. But I didn’t have a resource that I liked well enough to give to family caregivers. So, Anne and I decided to write the notebook that I wish I could have given her. We co-authored Help Is Here: When someone you love has dementia.
According to the Alzheimer’s Association, more than five million Americans have been diagnosed with Alzheimer’s disease or another dementia illness like vascular dementia or Lewy body dementia. In 2013, 15.5 million family caregivers and friends provided an estimated 17.7 billion hours of unpaid care.
We wrote “Help is Here” in a frank, conversational style – chronicling the stories of real-life caregivers who understand how difficult it is to care for someone you love who has dementia. The book addresses such topics as staying calm, dealing with grief, and the full-fledged rollercoaster ride of looking after a person with dementia. The book was written to give these family caregivers skills that they can use to communicate more effectively and compassionately with a family member who has dementia. It’s important for caregivers to understand what is normal and what isn’t when dealing with loved ones with dementia. It covers how to handle difficult conversations such as how to tell a family member that it is time to stop driving, making sure your family member sees a doctor, and how family caregivers can build a support team of their own to care for themselves during this trying time.
To learn more about “Help Is Here: When someone you love has dementia” go to www.dementiahelpishere.org