Chaplain's Corner

Recently I had the luxury of reading all day long. I picked a book, Losing My Mind by Thomas DeBaggio, a book about Alzheimer’s disease. Thomas DeBaggio is a man who had been diagnosed with Alzheimer’s disease and felt his final contribution to this world might be a book written during the decent. The writing of the book itself manifests the decline he experienced as he wrote. Scattered throughout the book are statements he wrote in a journal during the writing of the book. One of those statements reflects on the burden this disease is on those loved ones closest to the one with Alzheimer’s.

“At some point, I will no longer experience the pain of watching my mind deteriorate to a point of incomprehension. Then the loved ones around me will have the unwelcome task to look after me and shelter me from harm. My burden is slight compared to that of the truly living.”

“My burden is light compared to that of the truly living.” We probably all know someone who has a dad or mom, a grandpa or grandma, some relative that has Alzheimer’s. You may be the wife or husband or child of a person with Alzheimer’s. I write to pay tribute to you. To honor the love that gives and gives and gives long after there is much your loved one is able to give back. I write to honor you for the sleepless nights, as every noise awakens you and you wonder what you loved one is up for. I honor you for carrying the fear that comes as you watch the decline deepen. I honor you for containing the frustration and at times anger that arises even though you know that he isn’t really responsible any longer for the mishaps you must deal with.

Alzheimer’s doesn’t just happen to the person who receives the diagnosis. It happens to spouses, children, brothers and sisters, friends, neighbors, work associates, to everyone connected to that person in any way. In the early stages it is easy to excuse the memory lapses, the lost keys, the half of the grocery list that was never purchased. Almost unconsciously we compensation for each other; many times without saying a word. In the later stages there is the pain that comes when recognition begins to die. When you walk in and your wife doesn’t know who you are. When you are slapped for the kiss you offer because to the one with Alzheimer’s you are a stranger.

There is the burden of coming to visit and your wife won’t sit still to be with you, wondering off within minutes of your coming, unconscious that you even came to spend time with her. Or the burden of caring for your loved one and realizing that your role as a wife has morphed into the role of a health care aid as you bath, change diapers and feed the one who for years was an equal partner in the responsibilities and joys of raising a family and engaging your work and social lives.

Thomas DeBaggio was aware that all this was in progress and as he reflected on it he felt compassion for his wife and family: “My burden is light compared to that of the truly living.” Maybe it would be helpful if those of you who bear this burden could understand that your loved one with Alzheimer’s may have similar thoughts and be grateful, even for fleeting moments that you are willing to bear the burden of caring. You may remember the song “He Ain’t Heavy, He’s My Brother” written by Bobby Scott and Bob Russell, made popular by the Hollies. I dedicate this song to all who carry the burden of caring for a loved one with Alzheimer’s. May God continue to fill your hearts with love!