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Even with all my experience and a Master's degree to proclaim my credentials as a professional, nothing prepared me for the reality I faced as my husband's symptoms developed.  Like everyone else, I grew into my role as caregiver, learning to draw from resources I didn't even know I had.  While I was able to find strength in my resourcefulness I also felt the isolation that took over.  It was a fairly solitary 10 years for me but I did come away with certain revelations.

1. Nothing was ever as bad as I thought it was going to be.  It was fear of the unknown, and fear of change, that was my greatest enemy.  Information, resources and drawing from the experience of other caregivers was the answer.

2. Every change faced, every decision made was colored by how I handled my grieving.  Being able to name the process helped me find the strength to continue.

3. The one constant Tom needed most was to feel safe and loved.

It was Tom who encouraged me to write this book and it was Tom, who unwittingly, gave me the title.  The words not only expressed his own frustrations at his losses, but they expressed how both of us were treated by those who witnessed those losses.  My experience ultimately belied the rhetoric about this illness and that is what I tried to relate in this book.  This is the book I wish I could have read when Tom and I started on this journey.

I also began each chapter with the lyrics to our favorite songs and the poetry expressed in the songs speak to a time when commitment, unconditional love, and sacrifice were thought to be positive qualities.  My experience proved to me that those qualities still have a place in our lives and their power to strengthen in times of great need should not be underestimated.  Ours, after all, was still a love story from beginning to end.

About the Book

Beverly Bigtree Murphy gives the reader a unique and intensely charged personal account of what has happened to her and her husband Tom as his illness was diagnosed and progresses. She shares the isolation, the fear, and the continuous state of mourning that happened, and continues to happen as she loses Tom in bits and pieces. She shares how she got past the anger and feelings of abandonment as she moved into the final stages of his illness. Beverly maintains that dignity and worth are truly in the eyes of the beholder and have nothing to do with whether or not a person can feed or dress or toilet themselves, and she implores others to begin viewing people with this illness through different eyes.

Beverly describes this book as a love story. It is that, but it is also a comprehensive account of how Alzheimer's Disease impacts an entire family system. Her ability to pull her skills as a rehabilitation counselor into play in order to meet Tom's ever changing needs and the ability to relate that to others also makes this valuable reading for anyone choosing to make their career in the field of health services. More than this, however, she shares the humor, the irony, and the love that seeped out through the cracks as their communication broke down. She writes: "Here we are. We've found the love of our lives and one of us can't even dress himself without help."

This is the only book about caring for an Alzheimer's loved one at home for the duration of the illness. (80% of people with Alzheimer's are cared for at home.)

EXCERPT FROM THE BOOK

"How do you choose the time to say goodbye to someone who continues to live long after the ability to communicate is gone? Elizabeth KublerRoss talks about the stages of dying. All I can say is that with Alzheimer's you don't go through those stages just once, you go through them over and over and over. There are no perimeters to this illness, no time frame, no reference points, just the knowledge that it hits everyone differently. Just when you think you've got it all in hand you suddenly realize there's something else to mourn, there's one more thing he can't do or express and you are plunged into darkness again. It seems to never end. You can't hide from it, you can't control it, you can't fathom it."

My care of Tom doesn't just involve dealing with his eventual death, it involves dealing with all the "little deaths" along the way. I remember the moment he could no longer tie his own tie. I remember the day he walked into our living room with his shoes on the wrong feet. I remember the first time he picked the phone upside down and couldn't figure out where the voice was coming from. One would think I'd have this in stride by now, but I don't. The long term care of someone with Alzheimer's Disease is about facing little deaths, the periods of mourning we experience over things that seem inconsequential to others, but which are landmarks for us as much as it is about facing the actual event of death itself.

Tom lost his French regimental beret. It was hours before I missed it. I spent days crawling over every step we'd made hoping to find it. I left messages in restaurants, stores in the mall, stores in front of parking spaces we had used, everything just short of an ad in the local newspaper. I blamed myself for not being more vigilant. I cried for days. To this day, every time I think about that hat tears fill my eyes. On some level it had come to symbolize all of Tom's humor and joy of life to me and it too was gone.

... excerpt from: he used to be Somebody.

ABOUT TOM MURPHY

Tom Murphy was an international business man who was an expert on Middle Eastern relations and consultant to NASA when Alzheimer's struck him at the age of 52. He is now 14 years into this illness

As a friend says:

"He was someone who had a deepened sense of equality in the value of every person he met. He had the same anticipation of regard for the superintendent in his building as he had for the Prince of Brunei, and his generosity and his humanity towards those who crossed his path are legendary. Tom was someone for whom the word 'friend' had a special meaning. "

"I can't summarize Tom in one sentence. I can only say that at a time in my life, when I had lost my bearings in a sea of doubt and desperation, Tom helped me reset my course for a safe haven." --- Mike Fennel