JOAN’S BLOG – MON/TUE, JANUARY 11/12, 2010 – A LIFE IN LIMBO

Last week I received one of those e-mail’s that want you to fill in information about yourself and send it on to the next person, who is then supposed to change your answers to apply to themselves, and send it on to the next person.  The twist in this one was that your answer could only be one word. “Oh, what the heck,” I thought. I’ll give it a try. They were the usual questions in very shortened form with a question mark after each one – Significant other?  TV?  Pets?  Friends?  But then, one of the questions caught my attention. It was – Life?

I was being asked to describe my life in one word. The person who sent it to me had written “great” to describe her life. One of the people to whom I sent it, described her life as “settled”.  

It was just a silly chain e-mail, but it made me stop and contemplate. How would I describe my life? There are undoubtedly some good parts to it – supportive friends and family, a fulfilling job of writing, educating, and advocating.

On the other hand, I am living with a husband with Alzheimer’s Disease – a terminal condition that has and will continue to cut away at his personality, cognitive and physical abilities, behavior, and life, bit by bit, day by day, year by year. It is Hell on earth to watch, worse for him to be the one experiencing it, and exhausting being the caregiver trying to cope with it. So how do I describe my life? Is it horrible, sad, anxious, stressful? I scanned the dictionary in my head to find a word that appropriately described my life, and I came up with “limbo”. 

The actual dictionary definition of limbo is “an intermediate, transitional, or midway state or place.” In other words, neither here nor there. I no longer have the life I loved. I was settled, comfortable, happy. Both of us had good jobs, and both of us appreciated and enjoyed that we were still madly in love after 3 decades together.  Nor do I have the life that will be after Alzheimer’s Disease – hopefully settled again without the constant fear, stress, and worry about what surprise the next Alzheimer day will bring.

So that means my life is in “limbo”. I am between the good life I had, and the settled life I will hopefully have in the future after Alzheimer’s Disease. It is a life in a constant state of waiting.  Always waiting -  For what ability my husband will lose next, and how it will affect our lives; for his condition to worsen; I certainly do not want to believe I am waiting for Alzheimer’s Disease to take his life, which it ultimately will, but is that not what we are all doing? Living a life in limbo until Alzheimer’s Disease pushes us to the next chapter?

We, the spouses of Alzheimer patients, live in limbo between our old lives, and our next lives after Alzheimer’s Disease.  Our lives are not as they were, nor as they will be. We can only live one day at a time, trying to enjoy with our spouses whatever they are still able to do. A life in limbo.

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The Alzheimer Spouse LLC
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