Featured Article:
Alzheimer’s Disease DOES NOT define a person. She is still there, still needing to be included in life. More than ever. Please.

By Regina McNamara, RN, MSN, MPH

As a home care company specializing in the care of persons with dementia, we usually reserve this space for columns by our friend and colleague Bob Demarco, founder of the wonderful Alzheimer’s Reading Room. His site is one of the world’s finest for information on dementia. (www.alzheimer’s readingroom.com)

Recently our family lost my mother, Kelly’s grandmother to Alzheimer’s. Her course with this disease was not steady, but marked by periods of stability, lapses, improvement, then a fairly rapid decline. Like so many others with this disease, by the time her memory issues were brought to her long-term doctor’s attention, and she was diagnosed, she was likely several years into the disease process.

Alzheimer’s currently affects over six million people in our country and millions more around the globe in developed countries. By 2025, it is estimated that the number of persons with Alzheimer’s will more than double due to the aging of the “baby boomer” population. Sooner or later, Alzheimer’s will affect everyone - perhaps a loved one, a friend, a family member or themselves. There is no cure, no prevention, and not even a viable means of slowing the course of the disease in most cases. And this is the bad news, the really sad news.

But there are also moments of joy during the course of this disease.

It is so very important to remember, as we have learned over the years of caring for folks with Alzheimer’s and their families, that in even the later stages of the disease, the person is still there. The greatest gift we can give them is to respond to them, to interact with them, to treat them with respect, regardless of how they are acting or what they are saying. To go into their world, wherever it is: a high school prom in the 30’s, a battlefield in World War II, a wedding day decades prior. They are there and so are you. Enjoy the journey…. the music, the memories along with the person.

It is this unconditional acceptance of them as parents, friends, grandparents, and spouses by the people who love them that makes life meaningful for the person with Alzheimer’s. My mother was so very fortunate in this regard. A widow for many years, but rich in children, grandchildren, sisters, and friends, she enjoyed an active life up until the very end. She took pleasure in many dinners out, trips into New York, weekends at her summer home with family, regular church attendance, and many visits from children and grandchildren. She and her devoted caregiver rediscovered “old standards” in their evening sing alongs. She attended a smashing engagement party for her grandson just two weeks before she died. Her home became a safe and comfortable environment for her to live and eventually die peacefully and painlessly with her family present.

This is our goal for all our clients. And support for their families and friends.

And perhaps someday for our own loved ones or ourselves. May we all be as lucky as my mother. ■