The title of a recent column caught my eye and perhaps yours as well. The column was entitled, “Alzheimer’s and joy, an unlikely couple.” I was a bit surprised by the author’s perspective, but perhaps I shouldn’t have been. Many people believe only what is written about people with dementia, which is often the negative and unpleasant side of the disease and unfortunate lack of treatment available.
Sadly, if that is the case, they miss the beauty that can be found; the beauty that exists in each individual who, through no fault of their own, has a disease we cannot cure.
As it turns out, the author of this column was discussing a new book “Finding Joy in Alzheimer’s: New Hope for Caregivers” written by Marie Marley and Daniel Potts. Marie is a friend and colleague of mine and I was fortunate to know her during that time, experiencing her joy as well as her despair, as that is how it goes when you love someone with this disease. Though there was tremendous heartache, she has written about the humor, love and joy that can be found, in this book as well as her prior book, a touching, loving memoir, “Come Back Early Today.”
Years ago Lela Shanks wrote the book, “Your Name Is Hughes Hannibal Shanks: A Caregiver’s Guide to Alzheimer’s.” As a long-time caregiver to her beloved husband, Hughes, she described the strategies for caregiving that she learned along the way. But more importantly, Lela also shared how much she grew, learned, as a more independent woman during that journey, her love for her husband, and the humor and joy they experienced together, despite the disease.
Much is determined by your experience and how you choose to look at it. If you have not had a personal experience, you often perceive it as a “disease” and lose the “person” perspective. People who have had to experience this disease in someone they care about or love will look at the “individual” with a disease, and not just a disease. When it is your mother or wife, father or brother, your perspective will change.
I have worked with individuals with memory loss and their families for over 25 years and it has been a gift to me. I do not see them, as this column’s author suggests, as “people whose minds have gone numb.” For those of us who have experienced the “people” are dedicated to improving care and committed to making life as pleasurable and full as we can for those who are affected and their families; we see joy every day. Each person is unique. We take the time to know them – one person, like no other – and do whatever is necessary to make them happy. Yes, sometimes we are more successful than others, but when you search for ways to create happiness and joy in their lives, and are open to finding ways, joy can be found in experiences with every person – if you choose to look.