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Archive for October, 2009

At a recent booksigning for The Caregiver’s Choice, we were discussing the difference between fiction books (which I have written for many years) and non-fiction books.  The Caregiver’s Choice is my first non-fiction book. It is based on incidents in my own life and gives advice to others based on my own long experience as a double caregiver.  If I didn’t truly benefit from the advice I gave first to myself and then wrote for others, in my opinion the book is a fake.  But I did benefit from my own advice.  I did  make the changes I urge others to consider.  I am at peace about the choices I made as a caregiver.

My written fiction is not based on my life.  And, as a storyteller, I try not to give advice at all.  I try to keep the author out of the story entirely.  However, when a character arises in my head and wants her story told, I am to a great degree in charge of how that story will play out.  (Once in awhile a character surprises me and refuses to follow my guidance, but for the most part I am in control.)  I can plot the story from a definite beginning  through a middle that involves character growth and plot tension and I can bring everything to a satisfactory conclusion.

Caregiving is not like writing fiction.  The caregiver is not in control of the characters in her life story; she cannot guide the story line; she cannot create a satisfactory outcome if it is not to be.  So faced with such terrific unknowns as those that rise with serious illness, how can I urge a caregiver to “accept your choice”?  I urge that acceptance because I believe it relieves a great deal of stress in the caregiver’s mind.  But we too often think of choice only in terms of “yes” or “no.”  “No” is the answer others have made, but the caregiver has said, “Yes.”   I have come to believe that a better answer as caregiver might be, “Yes, maybe.”

When you can’t see the outcome of making a decision to deal with another person’s illness because of all the unknown factors involved in the progression of an illness, perhaps it is wiser not to make iron-clad promises–to yourself or to anyone else.  When we took my mother into our home after she had been diagnosed as having Alzheimer’s disease, I truly thought I could give her a pleasant, comfortable place to live and loving daily care.  But I did not totally understand the disease.  I did not understand that as her brain was further affected by the disease, those things that might have brought her comfort in the past no longer meant anything to her.

And she didn’t understand why she was in my home instead of her own or what was happening to her.  All she felt was fear and anger, and it came out in wild accusations.  But a more difficult part of the disease was her propensity to wander.  We live out of town and the landscape around the house is natural–hilly and rocky.  My eighty-three-year-old mother would simply leave the house and start trying to negotiate a steep slope or–scarier–she would go out onto the county road, not aware of the way the traffic barreled down the seven-percent grade.

Inside the house, she woke me every two hours all night long.  It became clear to me, to my husband, and to my doctor that the choice I had made was ruining my health and because I was too tired, my mother was not getting appropriate care.  Finally, I was forced to say, “Maybe I cannot do what I chose to do.”

I think I should have said that “maybe” when I first made the choice to invite my mother to live with us.  “Maybe I can do this.”   “Maybe this is a wise idea.”    “Maybe” allows one flexibility and the chance to change one’s mind–to look for other solutions.  “Maybe” does not bind one so tightly.  If the first choice doesn’t work out, one does not feel such a failure in taking a different approach to the caregiving. 

With the help of my siblings, I became my mother’s legal guardian, and we moved her to a care facility 34 miles from my house.  I saw her on a regular basis twice a week for fourteen years, providing outings and extra activities, reading her own poetry to her, making music for her and sharing little jokes and offering the love I had wanted to give her at home when I had made my initial choice.

So if you are faced with the sad choice to become a long-term caregiver and you want to say “yes”, I respect you and honor your commitment, but I suggest that for your own well being, you allow yourself to add (if only in your own mind) that powerful qualifier “maybe.”

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