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December 11 , 2009

When Goodbye Begins: Sharing Life With Dementia


John and I had been married a little over ten years when he was diagnosed with Alzheimer’s Disease. I had little knowledge of the disease. I had earlier said to him, “Whatever happens, we’ll face it together.” I meant it. He agreed. That’s how we were.

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The basis of this little volume is a paper on Insomnia, published in the New York Medical Journal in May and June, 1865. This was subsequently enlarged and published in a separate form, under the title “Wakefulness, with an Introductory Chapter on the Physiology of Sleep.”The very favorable reception which it met with in this country, in Great…

In the early days and months immediately after the diagnosis of dementia, the situation faced by family and those closest to that person, is one of tremendous challenge. The changes in the lives of these people are subtle, often slow, and yet, very extreme. Nothing is as it was. Not the person diagnosed, nor those close to them, nor the relationships. And the future is fraught with uncertainties.
What do you do? What is supposed to happen now? No treatment. No consultations, just “come back in six months, we’ll see how it is going.” Nothing. No direction.
I shed a lot of tears during those first few months. They were sudden and unexpected. He never saw. He never knew. Now I know that I was grieving. Grieving for the loss of the person as I knew him, for our life as it had been … and for our future.
Two years later this book was developing, out of frustration, and tears, and anger. All the literature available, all the books written, were directed at later stages. The only immediate advice was ‘‘get your affairs (wills etc.) in order’’. What about my frustrations? What about my tears? What about my anger? What about NOW?
To the observer, life is unchanged, but not so for the carer. Having come through this period, observed others, and talked to many, I believe there is a vital need to acknowledge the mental and emotional trauma that is experienced by the carer during those early days.
I think of that period as “when goodbye begins.”
My story deals with the real stuff of those early days and the reality of being the person closest to the one with dementia—carer, care-partner or the one-who-gets-the-blame-for-everything-that-goes-wrong-even-though-you-do-your-best.
This book is my attempt to ‘‘tell it like it is’’.

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