Life is filled with simple pleasures – small things that bring you joy. Simple pleasures are unique activities or experiences that make life pleasant in a distinctive way. My dad and I used to discuss our shared joy in listening to good music. He loved Il Divo and listening to their CD’s brought him great joy. He loved to put on a CD and simply sit in his chair and listen. I, on the other hand love to play my music loud – no matter if it is classical music or rock and roll, I love to turn it up some. My dad hated loud things. My point here, while obvious, is worth saying: what brings each of us pleasure is unique; knowing the nuances of what brings pleasure makes the difference between a positive experience and a disappointment.
Our mom was a writer and a poet. The progression of her dementia resulted in the loss of her ability to read and write and, eventually, to communicate verbally effectively. However, her ability to enjoy hearing stories and poems remained. Indeed, reading to her elicited obvious emotional responses, such as smiling, clapping her hands, and her cheeks flushing. Moreover, it sometimes helped her to share verbally what she was feeling. She loved people reading to her, and the experience never failed to bring her pleasure. In the way that music often brings words back to dementia patients, reading to mom brought words back to her.
While much of what I have done with mom in the last three years is intuitively driven by what I know of her, there is much to be learned about the disease she was living with and how it affected her needs. Knowing the disease and accepting mom’s growing limitations helped me be the Personal Directive Agent she needed. So, how did I learn what I needed to learn?
When mom entered into dementia care, the first thing I wanted to understand was how I could support her in her journey through the disease. Being a reader by nature, I bought a number of books to help me learn what was important to know about the disease and the best way families can help their loved ones. One of my favourite books is entitled “Creating Moments of Joy”. It is authored by Jolene Brackley and is available online and in book stores. The first chapter in the book “Letting go of expectations” opened my mind to a new way of seeing mom in this disease. Brackley compares and contrasts the regression experienced by Alzheimer patients with the development of a child, providing parallels that enabled me to think through what activities mom and I could do together and gain joy through.
Brackley’s insights gave me the ability to adapt to and connect with mom in her current state, whatever that was. For example, when mom was in the end stages of Alzheimer related dementia – according to Brackley that means she had the developmental level parallel to a three-year-old (or younger). When planning a visit with mom I would think about what I might spend the afternoon doing with a three-year-old and I found having appropriate expectations and plans ensured we both enjoyed our time together immensely. I would read or sing when she wanted to enjoy quiet time. But more often she wanted to move about and experience her world tactilely.
Exploring her environment with her, while knowing her capacity made the experience pleasant, and even joyful for both of us.
To support you and your loved ones through a future that may include incapacity, Exit Savvy has designed a partner resource to the personal directive: The Personal Directive Agent Workbook. This resource will walk you though a series of considerations that will help you and your personal directive agent develop a personal understanding about what is important to you.