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Archive for April, 2009

One of the chapters in The Caregiver’s Choice is entitled “Growing with Grief.”  In that chapter I was mostly addressing the grief that arises when the patient fails a little more each day while the demands of caregiving continue and there is no time for grief.  There is, of course, another sort of grief–the grief of total loss when your patient has died and you are left on earth to cope with the changes.  If  you have lost someone who has been your constant companion, you have lost not only the emotional structure of your life, but the daily structure of your life as well.  At first one feels so torn in half that all one can do is move blindly through pain trying to take care of final details.  The required after-death business tasks are many.  A widowed friend of mine wailed, “It takes so much work to finish up a life.”  But those chores will get completed.  And then what?

The daily habits that grew out of the needs of both partners may not now serve the remaining partner, but in the first numbness of grief, it is hard to know what will serve you–the survivor.  It is painful and difficult to think only of oneself after a lifetime of considering how one’s actions may affect one’s mate.   After my husband’s death in 2003, I still had the routine I had established for caring for my mother, but when she died in 2007, then there were no routines at all.  And I was too emotionally used up to answer the questions my daughter asked me:  “What do you want for yourself, Mother?”  I don’t know.  “Why can’t you feel free?”  I don’t know.  “How do you want to live now?”  I don’t know.  “Is there something I can do to help?”   I don’t know.

Finally, blindly, I stumbled upon a way of dealing with a life that no longer had a familiar structure.  I told myself, “Just do the next indicated thing.”  Sometimes that thing was so small that it would never have merited a thought during my busy years of caregiving–something perhaps so simple as making the bed.  Before my losses, I would make the bed while planning the day and never remember that I had done so.  But when I was alone, I would rise into an empty morning and look around for that next indicated thing.  Make the bed.  When the bed was smooth and pleasant to look at, I might have to take a moment to deal with the painful thought that I now slept in it alone, but I felt a little better because the room was tidy.  That task was one small bit of structure.  In the bathroom mirror, I saw the next indicated thing to do.  Comb my hair.  Put on makeup.  For whom?  “For me,” I said, “for me.”  Still talking to myself, I named the next task.  “Each morning, take time to dress as if you were going to a job.  You do have a job.  The job of surviving well.” 

Little by little, I added activities that helped structure that survival:  Quiet times of my own with good coffee and undisturbed meditation in the morning.  A calendar for each day to divide the empty hours into bearable minutes of activity.  Set times for walking to the mailbox.  Certain days of the month to pay the bills and file receipts.  A return to volunteering one day a week in the Alzheimer’s unit.  Starting violin lessons.

Did any of these activities return my life to the way it was when my husband was with me?  Of course not.  Nothing was ever going to do that.  But a little at a time, some of the activities became small pleasures and then a positive part of a larger structure, and finally I began to look forward with anticipation to recognizing “the next indicated thing.”

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Are you listening?

As I was about to leave the care center where I volunteer, I was stopped by a staff person.  She had been reading the lunchroom copy of my book, The Caregiver’s Choice, during her breaks, and she wanted to talk.  Her mother has been diagnosed with Alzheimer’s disease, and the aide mentioned that reading the book was helping her deal with this change in their lives.  I floundered in the conversation with her for a few minutes because I thought at first that she wanted advice.  Gradually I realized that what she really wanted was to tell me her story.  I set my instrument case down and listened and asked questions.  After about twenty minutes, she stopped pouring out the details of her early life and the reasons why it was such a drastic change to face this new care of her mother.  She stepped into my hug and squeezed me tightly.  “You’ve been so much help,” she said.  ”  I blinked, smiled, and said, “I’m glad if it helped.”

I went away thinking about that conversation and connecting it with the torrent of words that is pouring into our lives from everywhere.  Given that flood, why are we blogging and Twittering and writing our own version of an encyclopedia?  And why does every Facebook report have a place for further comment?  Possibly it is because, in this noisy, overwhelming world of communication from every corner of the globe, we feel lost, and we too want to be heard.  Even those who are not caregivers are feeling overwhelmed by too much information from other people.  We can’t sort out the sounds in our heads.  We may have serious problems in our own lives, but when we hear about earthquakes and bombings and piracy and shootings and war, it wears us out, and we can’t make our way through all the tragedies to find the peaceful path we need to walk  to solve our own problems.  Sometimes we can clarify our thoughts by blogging, but sometimes we just need to talk.

Talking to people who will listen can help, but only if they truly listen.  If they are just waiting for an opening to tell  your their stories or to give advice, it won’t help.  I remember recently saying to my daughter, “I don’t know the answers.”  And she said, “Oh, Mother, thank God.”  That made me think of all the times that the older folks in my life wanted to give me advice when what I sought was comfort.  Caregivers especially need this kind of comfort–someone who will simply listen, let them talk out their latest problems and the emotions that arise because of them, then hug them and go away.  So if you’re wondering how you can help a caregiver in your family when you can’t do much of the major caregiving yourself, let the caregiver talk. And unless he or she asks for advice, don’t give any.

As I state in the introduction to The Caregiver’s Choice, it was a caregiver who needed such comfort–a stranger to me–who inspired me to write the book.  I really said everything in it that I had to say and meant to say.  So why am I writing blogs?  I’m not sorting out sounds in my head.  I write blogs hoping (perhaps in vain) that someone will read them and buy my book and then a couple more and give them away to people who need them.  I don’t think everyone in the world needs to read my novels, and I wouldn’t blog about them.  But I’ll bet you that you and almost everyone you know is acquainted with a wonderful, overwhelmed caregiver.  That person needs my book.  And that person needs for you to listen.

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Sometimes in the Alzheimer’s unit when we have sung the words to an old country dance tune, I will ask a resident to dance with me.  Recently, we sang “Comin’ Through the Rye,” and I danced it with a long-time resident of the unit.  Then I turned to a newer resident and asked, “Have you ever danced “Comin’ Through the Rye”?  She looked up at me, her usually bright face very sober, and said, “Yes, but with a man.”  As our eyes met, I could hear in her mind, as well as in my own, the words “…every laddie smiled at me when comin’ through the rye.”  She was very much aware of all that she had lost.

I smiled and held out my hand.  “Well, I’m wearing jeans and a cowboy hat.  We might pretend.”  With a graciousness beyond imagining, the lovely little woman took my hand and followed me in the steps of the old dance.  Despite the pain of loss, she accepted the change in her circumstances with dignity.  When I returned her to her chair, her twinkle had returned, and she smiled as she said, “Thank you.”

In Chapter Twelve of The Caregiver’s Choice, “Change with Change”, I speak of the ongoing changes that must be faced by both the patient and the caregiver, and I suggest ways of coping with loss.  But since that day of dancing, I have been startled to find myself often near tears as I remember with real sorrow some of those changes in my life:  After we left the office where my husband Arthur heard the doctor’s advice to give up driving, he stood by the passenger side of his beloved blue Chevy pickup, grey and drawn.  “It makes me feel old,” he said.  When my mother could no longer understand the notes I wrote in our wonderful exchange of ideas and humor, she looked at my final note and said, “I can read the words, but I don’t know what they mean.”

At the time I was focused on helping each of them to endure such a drastic life change.  They each had lost a source of joy.  But I too had changes to accept.  I too had lost some pleasure from my life.  We had traveled thousands of miles on rockhounding trips in one or another of Arthur’s pickups.  But I had seldom driven one of them.  Suddenly, I had to learn to drive the four-wheel drive truck and not feel pressured, while he had to learn to let me drive it and not feel critical.  The loss of communication with my mother through words was a huge change.  She had made poems and puns, played Scrabble and other word games.  Words were a bond between us.  We had exchanged letters for years.  Now I had to devise a way to reach her despite her loss of verbal ability.  I could not take time to grieve.

While, in The Caregiver’s Choice,  I have suggested some ways to endure these losses, I have not perhaps emphasized enough how important it is to be gentle with yourself as well as with your patient.  You deserve the time to absorb changes, to mourn losses, to decide how to be when so much of your world is different.  You may not be allowed huge chunks of time, but when sorrow overwhelms you, take a moment, cry a few of those tears, feel whatever you feel.  There are no rules.  These several years later, I am granting myself those moments for tears that I didn’t shed then.  But ultimately, I hope I will learn from the lady in the Alzheimer’s unit who showed such grace in accepting a change in partners and simply allowed herself the pleasure of the dance.

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