By Laura Bramly
People have often asked me what inspired my read-along picture book for people with moderate to severe dementia, ElderCareRead Life Scenes 1. The answer lies in a question asked on the yearly care review questionnaire at my mother's nursing home.
My mother lived in a long term care facility for the last two years of her life. She was diagnosed with vascular dementia after a stroke took away her short term memory (and some long term memory) and the use of her legs. For the second year in her residence, she was moved to the memory care unit, behind the frosted glass doors. All the other residents knew that it was a one-way ticket through those doors. But I digress.
My mother's experience, and indeed our family's experience, with the nursing home was fairly typical. I was a long-distance caregiver, living 3,000 miles away from my mother and visiting every few months. I was only able to drop in on her life for a few days at a time. My stepfather was in his 80s, and my sister lived about 45 minutes away but didn't drive. Prior to my mother's stroke, no one in our family had experience with anyone with dementia. In short, my sister and I represented a fair number of boomer children with elderly parents.
Our family felt that my mother was getting good care from individuals who were genuinely concerned about her well-being. The rooms were nice, the food was nutritious if not gourmet. We didn't give much thought to what she would actually DO in the nursing home, besides wake up, dress, eat, watch TV, visit etc. I think we treated the place like a hospital rather than my mother's home, and the fact that there was a schedule of activities seemed enough for us. But what about my mother? Was it enough for her? Well, she was 85 years old with dementia....
It wasn't until the yearly review with her doctor, nurse, social worker and activity director that I started thinking about how she filled her days. As part of the review meeting, the facility asked individuals of our family to complete a questionnaire on different aspects of my mother's care regime. One question really stood out from the other more mundane questions having to do with food, medication, cleanliness of the home and the like, and the question was: "Is your loved one provided with opportunities to give back?" My stepfather didn't even know how to answer this question and left it blank. It certainly gave me pause to think, and it started the most in-depth conversation I had ever had with the activity director regarding the nature of the activities in which my mother was participating. For example, she was involved in a "cooking class" whereby the person running the class put the frozen cookies in the oven, and the "class" of 10 or more residents watched. We agreed that my mother would probably be better off in the small group that met not only to "cook" but to engage in purposeful interaction with each other while they enjoyed the fruits of their endeavours. I concluded that the activity staff, while well-meaning, didn't read their own questionnaires and take them to heart.
More importantly, for me anyhow, the question about giving back really started me thinking about the human-ness of people with dementia, the purpose of life, and the importance of contributing to society as an aspect of being human. I realized that, for the most part, we assume that seniors in long term care facilities do not have the capability or desire to give back. How many times do you see field trips from the nursing home to the local preschool to help out with the youngsters? Well, I've only experienced the reverse: the visit from the preschoolers to the home. How about a busload of nursing home residents going to the local community garden to plant and weed? Not!
Regarding my mother, the question of giving back caused me to rethink how I interacted with her and what one-on-one activities I did with her. The first thing we did was write a get-well note to my stepfather, laid up with a bad back. To be sure she could not hold a pen or write, but she could certainly dictate, something I had not thought of doing before. On a later visit, we sat down to look through a coffee table book with colour pictures of her town. We talked about every picture, and when we were done, she said "Again!" I came to realize how starved she was for information, for learning, for thinking, for engagement. However, I had to balance this need with her ability level, attention span, and propensity to get frustrated when she did not understand something. I thought that preschool and early-reading books might be about right, but I didn't want to buy books meant for a four-year-old. And so, I created ElderCareRead Life Scenes 1, a 12-page picture book with text printed in a large font that can be read aloud with the person with dementia, and discussion questions to inspire conversation betwee the caregiver and reader.
Some months in development, I had the opportunity to read the 6-page prototype of my book with my mother once before she passed away. She taught me a lot about how a person (or at least ONE person) with moderate to severe dementia communicates, by skipping over unnecessary words in the text and rejecting some question formats outright! Moreover, her interest in the book, the way that she lingered over the photos, the fact that the book engaged her for an hour, the intense and enjoyable discussions we had over some of the questions, and most importantly, the fact that she READ, out loud, when her reading days had been declared "over," inspired me to publish this book and make it available for everyone.
The "war" on Alzheimer's has so many fronts that I often feel scattered and discouraged. Changing our perspective of how people with moderate to severe dementia learn, communicate and give back is one front, but an important one. It starts with realizing that life is not over for people with dementia, and that indeed, it is the start of a new life, with new possibilities. There is no cure for Alzheimer's. But what we can change is the life experience of the person with dementia between diagnosis and demise.
ElderCareRead Life Scenes 1:
A shared activity book for people with dementia to enjoy with their caregiver.