Did I Remember to Tell You?
A Real-Life Guidebook for Dementia Family Caregivers
by
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Let them lend a helping hand. This is not a suggestion. It is a must-do. At least it is a mandatory directive for any caregiver committed to preserving a loved one’s dignity. As I write this, I can hear many of you in my head both agreeing and disagreeing. Caregivers seem to recognize the importance of letting them assist but in the same breath bemoan the fact that when they help, it’s usually not helpful. It takes more time, they don’t’ do it right, or two minutes later they’re off doing something else. I do understand because I had those same thoughts and feelings while I was adapting to the role of being a full-time caregiver. Fortunately, I was able to change my perspective so my words as well as my actions were in alignment with my true beliefs. Life must be filled with meaning and purpose. One Saturday morning before I knew what was happening, my dad decided to help me by filling the bird feeders. He was taking the large bird seed containers out of the garage while at the same time telling me what he planned to do. It really wasn’t a suggestion or even an offer to assist me, but rather a pronouncement. It was a demonstration of his desire to contribute and do something meaningful. This was an activity with purpose. There were a number of feeders, each different in size and design, throughout the yard. So, it did take time. Dad liked doing things around the house which he thought would be helpful to me. But every single time, it took twice as long to get him set up than it would for me to do it myself. And every single time, there was a huge mess with bird seed spilling all over the patio and the grass. As you might guess, I wasn’t always the patient, loving daughter I wanted to be. It was just one more frustration added to my already stressful life. Inevitably it took up more time, out of an already too short weekend, than I felt I had to spare. This is the part of the story where I wish I could tell you that I was suddenly able to draw on my decades of experience and knowledge and adjust my attitude. Well, that didn’t happen. At least not exactly that way. It was my grandson who unknowingly changed my perspective of the entire situation and allowed me to see everything differently. What did happen a month or so later was my grandson was spending Saturday with me at my house while Dad was away with friends. We were outside and he was helping me in the yard with gardening, watering, and feeding the birds. I spread newspaper on the patio so we could sit on the ground to fill the feeders together. Like most four-year-old kids he was very independent. After some gentle persuasion on my part and a lot of resistance on his part, he allowed me to “help” him. By the time we finally finished, the entire area on and around the patio was shrouded in bird seeds. I knew that I would be dealing with the stray seeds sprouting up a profusion of weeds throughout my lawn for months. But I didn’t mind. He was very proud of his accomplishments, and we had a really good time that afternoon. But later that evening it finally dawned on me. Why was this any different than when Dad sometimes made a mess? Another day of lessons learned. The rewards do outweigh extra efforts. The desire to help is ageless. Feeling useful is invaluable. Beginning at a young age and throughout our childhoods, we want to be a grown-up. We like the thought of being an adult, making our own decisions, keeping busy, being productive, and helping others. We do not want to sit on the sidelines and watch life; we want to live life. Those feelings and desires do not change.
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About the Book
While there is an abundance of information about dementia for family caregivers to learn symptoms, skills, do’s and don’ts, there is little to help them comprehend why it is so important to do everything differently than before this disease. And to fully understand the consequences when they don’t. From the book Did I Remember To Tell You? caregivers gain insight into the difficulty of doing and saying the right things for the right reasons, in accordance with best care practices and are guided towards being the “perfect” caregiver. It is based on Pam Johnson’s professional experience, spanning over forty years working with older adults in a variety of health care settings, coupled with the invaluable personal knowledge she gained while caring for her father. Learning about the disease and daily challenges from real-life stories effectively shows rather than tells caregivers what they need to know to make it from one day to the next. The stories create a powerful understanding of the tremendous impact this disease has on a loved one and remind us that Alzheimer’s and other dementias are about much more than mere forgetfulness. With a casual conversational tone, Johnson teaches caregivers to speak compassionately, cope more effectively, and expect the unexpected.
About the Author
For most of her life, Pam has worked in long-term care dedicated to meeting the needs of older adults and their families. She has held numerous professional positions including Nursing Facility Administrator, Director of Development for the Alzheimer’s Association, and Alzheimer’s consultant. In 2005, she founded Friends Place Adult Day Services, a specialized program for people with Alzheimer’s/dementia. In 2008, she became the primary caregiver for her father when he was diagnosed with “Mixed Dementia.” This personal understanding of the disease, and her vast knowledge and training prompted her to write this book specifically for dementia family caregivers.