Having a loved one with dementia is a rare second chance to see them through a different lens and get to know them once more.
One of the best books I have read about dementia and Alzheimer's recently is The Long Goodbye by Patti Davis. Davis, the Reagans' youngest daughter is a gifted writer. In the book, she chronicles her family's journey with her father, former President Ronald Reagan. It is such a moving and beautiful read that I have had to put the book down several times to take notes, or to take deep breaths.
If you have someone in your life who is on the same journey, this book is a must-read. Many of the moments Davis describes in the book will resonate with those who have a loved one with dementia, or those who have parents in the twilight of their lives.
Davis is such a gifted writer with a deep and introspective soul. For many years she had a tenuous relationship with both her parents that caused them tremendous pain.
Fortunately, redemption did not come too late for her but regret for all the lost years is a thread that runs throughout the course of the book: "I began to grow up when I stopped, opened my heart, my arms, my life to my parents — when I acknowledged the cords between us that had stretched for miles without breaking."
The Long Goodbye was a term coined by former First Lady Nancy Reagan at some point after the former president's diagnosis in 1994. It is a most appropriate description for the long journey that all families go through with a loved one who has dementia. In this book we get a front row seat to how a very public family grappled with a disease which now afflicts 22 percent of Americans above the age of 65. Alzheimer's Disease International estimates that 75 percent of people with dementia are not diagnosed globally, with that rate believed to rise as high as 90 percent in some lower- and middle-income countries.
Alzheimer's is a difficult disease. It's hard to see someone whom you once knew to be so verbal and full of life, slowly disappear in front of your eyes. Davis talks about the challenges of accepting and adapting to her father's condition: "The tendency when you're around someone with Alzheimer's is to try to reel them back in, include them in the conversation, pique their interest in whatever you happen to be discussing. But I stopped doing that because it seemed to me that I was intruding. Wherever he was, he was content. Wherever he was, he shouldn't be disturbed."
If you suspect that your loved one has dementia, it's always best to seek a professional opinion. It is always best to get an early, and correct diagnosis. Denial benefits no one, most especially the patient. Take your loved one to a neurologist or a geriatrician. Diagnosis is only the first, albeit arduous, step on the journey. Post-diagnosis support is often a daunting field to navigate, particularly when the systems meant to provide such support are confusing, limited, or outright non-existent depending on where one lives.
The years when your loved one is slipping away are both difficult and precious. Davis writes that time for someone with Alzheimer's becomes momentary and immediate. It loses its linear flow and becomes snagged, oftentimes in the moment at hand—"Those who bear witness to that find themselves adjusting their own perceptions."
Every moment becomes special and extraordinary when loving someone with this disease. The smallest gestures, and the simplest phrases, now take on a larger meaning.
For more information on dementia and Alzheimer's visit https://www.alz.org/help-support/resources
