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Archive for February, 2009

I played my baritone uke and we sang “Good Old Mountain Dew.” A lovely and smartly dressed white-haired lady sang every verse.  When we finished, I asked her, “How does a classy woman like you know every word to that song?”  She laughed and her eyes began to twinkle.  “Ah,” she said, “I have a history.”

Not an unusual story–except for the fact that she is a resident in a secured (read, locked) unit in an Alzheimer’s facility.  Her humorous, wise words made me stop and think.  I looked around the little music room where “Elaine’s Band” plays every Friday.  Every resident there has been diagnosed with the disease.  Yet each reacts to it in a different way.  And each member of the staff approaches the disease differently.  We all have our own personal history, and we cannot help bringing that history to our work as volunteers, or caregivers, or patients.

My mother spent nearly fifteen years in that facility.  In order to help her on the difficult journey to the end, I had to know her history–and my own. In The Caregiver’s Choice, I include two chapters addressing these intimate histories.  “Know the Patient,” in which I discuss all those traits and habits and lifestyle choices which a patient brings to an illness, gave me insights into my mother’s way of dealing with challenges.  That insight helped me to use her strengths in her care.  “Know Yourself,” in which I dug into my own habits and likes and dislikes, helped me to understand what I could do and could not do in caring for my mother (and my husband) through their terminal illnesses.  Such clarity about our histories made me feel more peaceful about the choices I made as a caregiver.

You know, it feels odd not to be telling you this story over a cup of coffee–just the two of us–in a one-on-one conversation.  I’m new to blogging.  I know that out there somewhere is a person who would feel comforted to know that I care about his or her caregiving burdens.  But I’m not young.  I was born before television, grew up without much technology, and this method of meeting doesn’t quite fit me yet.  If you have comments about blogging, I’d like to hear them.  If you want to know more about me, check www.elainelong.com    If you’re a caregiver, remember, you’re a generous and wonderful person and I admire you.

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First Blog Entry

I wrote my new book, The Caregiver’s Choice, to save my own sanity. During the first years of my mother’s illness (Alzheimer’s disease) and my husband’s illnesses (heart problems, diabetes, and cancer) I took the time and made the effort to learn how to care for those two people I loved so much. But I did not take time to learn how to care for myself. Even when I came to a point of near despair while caregiving, I knew that I could not stop caring for my special people. I could not run away. But I had to do something.

Because I am a writer, I am accustomed to sorting out my problems on paper, and so I began to write the book that became The Caregiver’s Choice. And I began to see that I had to change my mind, change something inside myself, in order to survive. Chapter by chapter I told myself the things I needed to hear, the steps I needed to take. And people began to see a change in me.

Other caregivers noticed a new serenity in me and began to ask me what I was doing to survive so calmly and with such joy despite the double caregiving. So, years before this book was published, I began sharing the manuscript with others. Everyone who read it found something that helped them. A husband told me it helped him with both guilt and anger about his wife’s dementia. A daughter said that the book helped her to accept the sad downward progression in her mother’s health. Another daughter learned that she had done all that she could do. Many many people commented on the chapter about anger. One weekend a professional caregiver in the nursing home where my mother resided sought me out and said, “Girl, you saved my life! Thank God for your manuscript. My brothers wanted to create a big to-do about our mother’s care this weekend but I thought about your second chapter (Release Your Relatives) and stayed calm. I listened a lot and I think I see a few ways that they might really help me even though up to now, all they’ve done is whine.”

Now that the book has been released and is being read by people around the country, more and more caregivers are sharing their stories with me. There are millions of private (nearly overlooked) caregivers. For every person with a serious disease, there is at least one family member who must interrupt the forward progress of his or her own life and career and step in to help. But quite often, no one steps in to help that caregiver. So let me close this particular blog by saying that if you’re a caregiver, you have my admiration and respect. I wrote this book for me–but also for you.

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