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Throughout my book, The Caregiver’s Choice, I emphasize that caregivers already have too many “shoulds” in their lives and that nothing I say need add to their burdens.  So keep that in mind as I tell you a story–a true story.  I’m not nagging, just sharing.

Last  Tuesday, as I pulled into the country lane that leads to my voice teacher’s ranch house a quarter of a mile away, my car stopped dead and stayed dead.  I called my teacher who drove up and helped me push the car to the side of the lane.  She was concerned that I had to wait there for the tow truck, but she had another student and could not stay with me.

The tow truck was an hour away, and the sun and the car were hot. I moved along the fence, leaned on the fence post, and stared disconsolately into the small ragged meadow between the irrigation ditch and the highway.  The ruts left by some ditch-cleaning machine scarred the grass.  Piles of debris–a mixture of mud and sticks–were heaped at random along the ditch bank.  The locust tree above me was scraggly; many of its limbs, barren of leaves.

I leaned my cheek on the hand that was resting on the fence post, and as I did so, I suddenly became aware of the texture of the wood beneath my hand.  It was rough, but there was a pattern to it.  I lifted my head to look at it.  The post was made of an old dead tree limb.  The wood still bore interesting circles and other patterns where bits had pulled apart as it dried.  But the post was sturdy and useful.  It held up its part of the barbed wire fence.  I rubbed my fingers over its rough top and thought, “When I’m gone, I wonder if any part of me will last and be as useful as this post .”

Somehow, the whimsical thought made me ashamed of my grouchiness.  Hadn’t I learned anything by writing The Caregiver’s Choice?  After all, the book is about finding serenity by changing one’s mind.  Could I use my senses to change this long, hot, anxious wait for help?

Senses.  We have at least five of them, but we don’t use them all equally.  The fence post had made me aware of my sense of touch.  I straightened up and focused on my surroundings in a different way.  From the grass on the other side of the ditch came a turtle dove’s soft “coo-coo.”  I don’t know how long the bird had been calling.  I had only now begun to pay attention to the lovely liquid sound.  I thought briefly of my lost voice lesson.  I  needed a teacher.  What natural magic in that bird’s throat, what movement of air and larynx, allowed that crystal pure, but mournful, sound?  As I listened, another sound came to me.  The water in the irrigation ditch was hurrying along, brushing the sides of the ditch with busy little gurgles, but mostly just swooshing out toward the hay meadows in a businesslike way.  I could almost believe that the water was aware of its vital importance in this agricultural spot.  I looked toward the ditch. In the shade, the water was dark khaki colored, but when it rushed through a patch of sun, it turned into rich gold.

My eyes caught the debris along the ditch again, and I began to study it in a different way.  The mud was rough as bark itself in some spots, smooth and shiny in others.  Twigs, trapped in the mud, still pointed upward with angled fingers.  An artist would have loved to capture  the angles and shadows of those natural things, fallen away from their source.  I looked up at the locust tree above me.  The blossoms were listless and fading, but a remnant of their lovely scent hung faintly in the air.  As I sniffed with appreciation, I thought, “Well, I’ve used my sense of touch, hearing, sight, and smell, but what about taste?”  I glanced around and laughed in delight.  In the roughened ground just across the barbed wire from me was a patch of lambsquarters–those delicious wild greens with their fuzzy grayish leaves that I had often,  with my mother and my grandmother, picked in the spring for table greens.  I knelt and reached through the wires.  I picked a handful of lambsquarter leaves, shook off the dirt, and ate them raw.  Memories rushed across my tongue.

As I grasped my faithful post to stand up from the ground, I saw the tow truck nearing my lane.  I looked at my watch.  I had been lost in a different sensual world for almost an hour.  I had not gone to a resort or a fancy vacation spot.  I hadn’t even sat down.  But I was refreshed and renewed, and I could face the question of my car’s problems with much more serenity.  I was almost sorry to see that tow truck…almost.  (The car?  $300 alternator.)

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The subtitle to my book , The Caregiver’s Choice,  is:  Find Strength and Serenity by Changing Your Mind.   It is true that I did manage, while in the midst of double caregiving, to reach a place of  fair serenity by changing my mind, and I do wish for you to be in that same place.  But I can’t change your mind.  Only you can change your mind, because only you know what’s in there.  And it takes some serious, private honesty to look at what is in one’s mind.

Consider the title of the first chapter of the book:  Accept Your Choice.  People are very quick to say to me, “I didn’t have any other choice.”  That’s not true, but it’s almost easier to believe than to look honestly into our own thoughts and emotions and see why we took an action or started on a particular course in our lives.  It is very easy to blame other people and external circumstances for the results of our own choices. Every choice we’ve made along the way has led to the outcome we’re living with now.  From adulthood on, we have always had the option to stay or go, to act or not, to accept or reject.  It’s hard to think that some choice we made years ago has brought us to this present place, but it certainly frees the mind of all those resentments toward others once we accept the fact of our own will’s operating to drive us to a particular choice.

When I made the difficult decision to invite my crazy, angry mother to live with us and to become her guardian and to be there through all the rest of her demented life, I had to sort out a whole mixed-up basketful of reasons–some thorny, some blurry, some as heavy as a load of stones, and some very loving and admirable.  Trying to be honest with oneself about a whole lifetime can be painful.  You pick at scars from old wounds until they bleed again.

Why have you made this decision, Elaine?  Is it because you’re the oldest daughter and it is expected of you?  (Well, I did have that training and place in the family whether I wanted it or not.)  Is it because you want to be the eternal “good little girl” and do what the world considers to be right?  (Sure, or at least look like I’m doing what’s right.  It’s hardly decent to abandon one’s mother to strangers.)  Do you feel that this will somehow make you a saint?  (I’d have to be out of my mind to think that.  I’m doing this because it needs doing.)  You’re not giving me any reasons that will see you through to the end of this ordeal.  Can you come up with something better–something that is true to your real self?

And so it went until three reasons became clear and gave me comfort and serenity in my choice:  1)  I believe that we are all responsible for the structure of our society–for decency, honor, and integrity.  In an honorable world, we care for our own.  2) Mother earned this care.  Through the Great Depression, she washed on the board for five children and her husband; she went to work to help us get through college; she set aside her own goals to make sure we reached ours.  3) I love this old lady.  Difficult as she may have been with her complicated personality, she was always my friend.  I know her yearnings and her longings.  As she continues to lose words, she won’t have to tell me how she feels, because I know. 

Those reasons gave me strength to take on the job.  I chose to make my mother’s final years as pleasant as possible in the most unpleasant circumstances.  I’ve never regretted the choice.     …   I’ll continue my thoughts about your thoughts in another blog.

Sometimes I think that we should all be quiet for a while.  The clamor of the outside world invades our thoughts until we don’t know what we hear.  Battered by the sound of words, we close down our minds.

It is not easy to find silence.  During the years that I was a caregiver, it felt to me at times that everyone wanted to tell me how to do what I was doing.  Well-meaning people added their advice to the load of information and instruction I was getting from the medical commuity.  But very little of that information was directed toward my well-being as a caregiver.  No one ever asked, “Is this too much?  Is this what you need?”  Words swirled in my head like hailstones.  Busy as I was each day, I could not find silence in any spot in the outside world.

At last, in a local cafe/bookstore at the corner table that I began to feel was my own, I used my short hour of respite between my two caregiving stints to try to find a way to silence.  I had to begin with words because they needed to be cleared away.  I had to slog through the mess in my head, tossing words and ideas out the back door, or in this case, into a dog-eared notebook I carried in my tote.

I began to think of this activity as “Writing Down to Silence.”  I cleared the surface stuff–inane thoughts and useless resentments about current situations at home or at the care center.  Then I stirred the waters idly with whatever words came to mind.  I jotted them down and let them make their own noise until they floated aside and let me go deeper.  Some of the ideas for  The Caregiver’s Choice began to bob around, but I wasn’t ready for them.  It did help me, however, to name a chapter.  The chapter names were signposts toward silence.  They didn’t babble.  They stated something and let it be.  Accept Your Choice.  Release Your Relatives.  Because I am a writer, I could see that those chapter titles were going to lead somewhere, and that gave me a renewed sense of direction toward that deep inner quiet space from which– in the past before caregiving took over my life–  my novels had arisen.

One day, writing vainly toward silence and remembering that quiet space, I felt sudden tears and realized how lonely I was for myself–my real self.  How long it had been since I had descended freely to that wonderful white space deep in my mind with no thought of another’s needs to draw me back.  I cherished the sense of duty and honor that one brings to caregiving for a spouse–a mother–a child.  But the tears continued.  I wiped them away quietly, not wishing to draw to me any kind words from other people.  Then with deep yearning I thought about duty and honor to oneself.  Yes, I was wife and daughter and nurse (and mother and grandmother and friend and all those other roles I played in the noisy outer world,)  but like each of us, I was also that private other person, my ownself.  And suddenly with that thought, I slipped downward into a deep and beautiful and private silence.  And there were no words at all.  Just silence.

And all–the most, the best—that I can wish for you is that you may leave this cluster of words and rest in your own silence.

Nine tall teenagers surrounded the buffet table talking and laughing.  Across from me a young father fed plum-colored puree to his baby boy.  A toddler kicked and laughed in her mother’s arms.  A few steps away in the den, five or six young children played Monopoly with their grandfather, giggling wildly.  Several young adults were gathered in the living room having a friendly, but loud, discussion.  My sister stood behind the teenagers holding the coffee pot up for me to see, mouthing, “Want a refill?”  I shook my head and smiled at her.  And suddenly, there 2000 miles from home in the midst of a family celebration, I thought of a chapter in my book, The Caregiver’s Choice: ” Release Your Relatives.”

When our mother was diagnosed with Alzheimer’s disease and I chose to be the main caregiver, my siblings and I did not always agree about the disease itself or the care to be given.  This smiling sister and I had often seen the situation from different points of view and had expressed our opinions strongly.  There had been tearful phone calls and many troubled discussions.  Though we had been raised by the same parents in the same house, we didn’t always even agree about what our mother would have wanted if she could have spoken for herself.  As we slowly sorted out the areas of care in which each sibling was able or wished to participate, I saw that it was important that I give up expectations of what sort of help I might get and vital that I not dictate “shoulds” to anyone.  Each person who faces the illness of a parent brings to the sick room, along with the love, all the fear, sorrow, regret and guilt gathered up over a lifetime.  Only that person knows what it is possible to give in times of crisis.

Patience is important.  Whichever person is able to see the situation most clearly must find information about the disease, investigate care plans, think–and talk–about the difficult subject of money, while at the same time helping other family members to catch up, to accept the sad truths about Alzheimers and come to some conclusions about their role in the caregiving.  But even while mired in this bog of pressing details and new emotions, it is absolutely vital to take a longer view.  Your mother is going to die.  What do you want after she is gone? 

On this subject I was grateful to discover that my sister and I were in absolute agreement.  We wanted an intact family.  I could see us backing away from our arguments when they got too intense and softening our tone of voice when we began to sound angry.  I was aware of each of us suggesting that we wait and talk later, that we consult other family members.  Each of us in our own way turned to our spiritual resources.  In the longer view, neither of us could bear the thought of a fractured family with some of the parts missing.  We were determined not to end up waging a lifetime family feud with half the family not speaking to the other half and constant negative energy bouncing through the generations down through the years.  We refused to dishonor our mother in such a way.

And so, there I was, in my sister’s happily crowded kitchen, helping to celebrate her 50th wedding anniversary, delighted as her children came to hug Aunt Elaine and her grandchildren came shyly to my side to get to know this great-aunt from so far away.  I caught my sister’s eye once more and raised my coffee cup in a toast of gratitude.

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.”

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.

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.