Norman McNamara’s “Me and My Alzheimer’s”

August 31, 2011

If you really want to understand what it’s like to live with Alzheimer’s disease, I recommend you read Me and My Alzheimer’s by Norman McNamara, an Englishman in his early 50‘s who suffers from early onset Alzheimer’s disease.  The book is a series of essays taken from McNamara’s journal, but it reads more like a series of personal e-mails from a close friend who has Alzheimer’s disease.  In this book, those of us who thankfully do not have the disease get a window on the lives of those who do.  There is a wealth of wisdom for the rest of the world in this book, way too much to summarize here, but I will try to hit the high points.

“Get help early on, the earlier the better.”  McNamara is a huge advocate of Alzheimer’s medications, because he sees real improvement in his ability to think when taking them.  He also recommends learning everything you can from reputable sources about the disease process.

Those with Alzheimer’s will have good and bad days, which he describes like this, “It’s like your glasses getting steamed up bit by bit until you can’t see, but it’s happening in your mind instead of your eyes.”  He will go from knowing exactly where he is in familiar surroundings to being completely lost in familiar surroundings.  When this happens, he describes the fear as “petrifying.”  In fact, the fear and the feelings of helplessness are one of the most horrible things about the disease for him.  Sometimes, he will go into what he calls a “trance” where he does not hear or understand anything.  At other times, he describes stumbling and slurring his speech, as if he is drunk, although he has had nothing alcoholic.

Even though there is still a stigma attached to the disease, he recommends telling people.  Yes, it is hurtful when some friends and family do not call or come by anymore, but for those who do, there is more understanding.  Norm is blessed with a wonderful wife, children and grandchildren.  Much of his joy in life comes from spending time with them.

He relates that noises are strangely made much louder, so a crowded room or a television program at a normal volume level may seem deafening to him.  This adds to his confusion and level of fear.  Also in crowds, he feels as if “everything going on around me is quicker than me and I am playing catch up.”  Because of all this, simple things like shopping trips, going out to dinner, or sporting events can be very confusing and frustrating for him.

The most important thing Norman McNamara conveys in Me and My Alzheimer’s is that in his words, “I AM STILL THE SAME PERSON!!!”  He encourages all of us to treat the person with Alzheimer’s with kindness, dignity and respect, and to laugh often and long.  Smiles, hugs and encouragement are always helpful.  Look at the world through the eyes of the person with Alzheimer’s disease, seeing everything as if for the first time, and notice the beauty and the blessings.

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