When you are a caregiver for a loved one with dementia, one of the saddest things that happens, happens to you as much as to the patient.  Little by little, painfully, slowly, your loved one moves away from you into a world where you can’t follow.  You can no longer reach the mind that so charmed you or inspired you or entertained you.  My mother was my first and best editor.  I enjoyed her skill with words.  She was a published and award winning writer of short stories and poems.  But through the fourteen long years of her dementia, I lost a sense of my mother’s reality.  Only now and then did a spark from her blue eyes, let me know that she was still there. (And often that spark was elicited by my reading poetry to her.)  While sorting her written work after my mother’s death, I found the following poem, “Spring Wind”, in an unpublished book of verse for children called Songs and Scenes.  The poem brought back the mother I used to know.  I share it here in her honor.  (The copyright to the poem belongs to the estate of Evelyn Mullenax and the poem may not be reused without permission.

                                                                                                                                       Spring Wind

The wind is cool,” my mother said,/ You’d better wear a coat.”/ “I heard you sneeze,” said Daddy./ Wear a scarf around your throat.”/

But the wind at which they fretted/ Was the fragrant breeze of spring./ It brought the scents of everywhere/ And softly ruffled up my hair,/ And left my heart without a care/ And stirred the birds to sing./

“Come out!” I called to Mother./”Come out and see the day.”/ She came and knew what I knew–/ That spring was here to stay.

The wind was singing springtime/ To everything around./ While Mother let it blow her hair,/ I let my arms and legs go bare,/And, side-by-side, spring reached us there/ Sitting on the ground.





The release is a joy….

My new CD, “The Demise of the Goodhearted Woman: A Sad Little Story Told in Narrative and Song,” is now available through www.thebookhavenonline.com   This release is a joy, and I want to tell you about it.  At the end of my last blog, I said that I planned to speak of the “afterward” of caregiving.  That was back in early February.  Then another family member died, and I watched a new widow begin the grieving process, and I didn’t write the blog I had planned because I realized (once again) that every person grieves and recovers in a uniquely personal way.

I didn’t feel qualified to speak for that new widow.  I can speak with validity only of my own journey through grief and my own recovery.  “The Demise of the Goodhearted Woman”  is an example of what I did to rebuild my life.

I began to write the music and narrative for my new CD ten years ago.  And then my husband’s illness became more grave, my mother’s Alzheimer’s condition required more time and energy, and I set the songs aside.

After the death of both of my loved ones, when my caregiving tasks were over, I began to look at my own life and to consider how to rebuild it. When your spouse dies, you lose not only the emotional structure of your life, you lose the daily structure of your life as well. Without a definite plan for the activities of each day, I felt myself drifting into loneliness and depression.  And I was too proud and stubborn to let that happen.

One thing my husband had not shared with me was music making, and when I was involved with music, I found I didn’t miss him as intensely as when I tried to do things we had done together.  So I focused on music. I went to the files for those old songs.  I bought some songwriting software for my computer and began to create sheet music.  I tuned my baritone uke and sang the songs over and over until I was familiar with them once more.  Then I gathered the talented people who are in my band, and we found a brilliant engineer to record the story.  I asked an artist friend to do an original cover for the CD.

Now, this wonderful week, ten years after I began the CD, when I look at that bright-colored cover and listen to the songs, I realize that even if you think you’ll die yourself when your loved ones die and leave you bereft, you don’t die.  It sometimes seems that it would be easier if you could go with them.  But you don’t die, and slowly you come to see that you have choices.  You have earned something through your painful journey.  You’ve earned the freedom to follow your own dreams without turning to consult another about the cost in time and money.  And as you accept this bittersweet gift of freedom, you find new purpose within yourself.  At least that is what happened to me.  I remembered that as a writer, songwriter and storyteller, I am a creator.  And now the CD is finished.  I am filled with joy.  I’ve had such fun writing and singing this story.  I am alive again.  Creation is life.  Creation is Life!

The Caregiver’s Choice is in Barnes and Noble’s Rising Star Collection this month.  http://www.barnesandnoble.com/u/iUniverse–rising–star–books/379000118/?    Look here soon for my new blog, “What about afterward?”

I have not added to The Caregiver’s Choice blog for some time because I feel uneasy about this blog in particular and perhaps about blogs in general.  This blog was created to draw attention to and to sell my book The Caregiver’s Choice.   While I try to write wisely, kindly, and well when I add to the blog, I am always aware that the purpose of the blog is different from the purpose of my book.

I wrote The Caregiver’s Choice to save my own sanity durng the fifteen hard years when I was a double caregiver.  I first shared the book in manuscript form to help others who were facing the same difficult challenges.  I then paid for the publication of the book so that it might reach caregivers whom I did not know, but who could benefit from my suggestions.  Iwanted the book to be inexpensive and in a simple form easy for busy people to read.

My main hope was that the caregiver would be encouraged, perhaps empowered, by my words to turn inward, make mental changes, and find serenity and strength that would last long after my words had faded from memory.  People have told me that the book has helped them in that way.  There is a very pure sort of joy for me in those reports.

But whenever I enter the area of marketing, my sense of joy dissipates immediately, and I feel uneasy about the basic dishonesty of acting as some sort of wise old woman while  knowing full well that the blog was created to make sales. I believe in the helpfulness of my book. I haven’t a clue about the helpfulness of what I say in the blog.  I don’t think caregivers really have much time to spend on the computer. I certainly didn’t when I was so intensely involved with my husband and my mother.  So, if I’m reaching anyone, it is probably not the people I intended to reach when I published the book.

And as for blogging in general:  I have friends who write carefully constructed blogs illustrated with lovely pictures, but I almost never read them anymore.  As a writer, as a reader, as a thinker, I am tired of short bursts of words.  I want to be deeply, quietly involved in thought when I read.  All my mail boxes are full of junk words.  I spend too much time deleting and discarding unwanted words.   Such words make me feel as if my mind were eating straw while I’m dying of hunger.

Shortly after I began writing the blog for my book, I stopped writing in my own private journal, except for bits of short, private verse.  I share one of those verses here . (I never, never, never call my verses poetry.  I am not a poet.)

            Every poet, every writer, every preacher/ Politician, lover, auctioneer, and teacher,/Lawyer, con man/ Has this in common:/Words/ We all use words to hide/To hem and haw/To hope? To heal? To howl./But not to know./ Words lead us astray/At our own bidding–/Highways and biways and alleys and lanes–/ We go./ But always away./ So we are not forced/To stand still and know.

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.”

I don’t know for sure who reads my blogs about The Caregiver’s Choice, but I’ve had a strong feeling this week that someone needs the comfort of what I am going to say today.  The details are rather personal, but then so are the details in my book, and if the story they tell helps anyone, it’s worth it.

When we took my mother into our home, she was already suffering severe dementia, so I was not surprised that she could focus on no one but herself. She had no concept of the strain it caused me as she woke me every two hours night after night nor of the effects of her angry outbursts on both my husband and me.  I began to think of that unawareness as “the patient”s tunnel vision.”

But up to the time of my husband’s second heart procedure, I had not seen such tunnel vision occur in him.  At Arthur’s request, I had spent the week before his hospital visit making all the arrangements by phone to smooth his admittance.  We drove the hundred miles on the day he was supposed to enter the hospital feeling confident, only to discover that they couldn’t even find his name in their computer. Our daughter had driven from her home in another city, so she sat with her father while I tracked his records.

When my husband was finally in his hospital bed, the medical staff said, “We’re stopping his diabetes medicine because the dye for the anagram will be very hard on his kidneys, and we don’t want to add to the strain.”  I could understand that, but since I’d been the one who daily tracked his blood-sugar level, I knew that the swings in the level could be rather severe.  I asked the nursing staff to check his sugar level, but no one did.  I also asked them to be sure he got food, but they told me rather casually that his tray was lost and they’d feed him when they located it.

Because of a bone spur in his spine, my husband had slept for years in a recliner with his back somewhat bent.  He asked them not to put his bed down flat as it caused severe pain.  Despite his request, each time they checked his vital signs, they cranked the bed down flat. And indeed, the bone spur hit a nerve, causing pain.  Clueless,  they would ask Arthur, “Why is your blood pressure so high?”

Before it was even time for the heart procedure, I was a nervous wreck.  Then, my husband said to me,  “Why are you so upset?  I’m the one in this bed.”  Shocked and hurt, I couldn’t answer.  I didn’t want  to answer for fear I’d be angry and make his problems worse.  But didn’t he see that his health situation was changing my entire life as well as his?  No, he apparently did not, and since I knew that, by then, his blood sugar was probably low, with the resulting irrationality the condition caused, I didn’t say anything at all.  I just stumbled out of the room.

My daughter asked a hospital family counselor to talk to me for awhile.  That helped me to get through the day and the night, but it didn’t ease the loneliness and hurt.  If Arthur did not understand the effect on me of what was happening in our lives, then we weren’t really a team any longer.  I couldn’t turn to him for comfort.

At that time, there were several forest fires raging in the Colorado mountains, and when my husband was released from the hospital, we drove home through dense smoke.  Arthur rode with our daughter, and I drove alone.  The sun was only a blood-red smear across the shrouded sky.  I could see none of the familiar landmarks.  And that was happening in my emotional life as well.  The familiar landmarks were gone.  How could I continue to take care of my mother and my husband without the loving support I had previously received from them both?  My own pursuits, my writing, my other creative projects, my career itself were all on hold, and nobody seemed ready to acknowledge that.  But under the circumstances, how could I be selfish enough to cry out, “It’s my life, too!”?

At home we settled Arthur in the recliner to begin the recuperative process.  And then–a sweet miracle.  My daughter came into the kitchen and said, “Mother, I can stay.  Why don’t you go to the hot springs hotel and spend a day just for yourself at the spa.  I can take care of Daddy and still get back to my job on time.  You need to rest because I know that whatever happens with Grandma and Daddy also happens to you.”

My daughter’s understanding and her gift of that day gave me  the chance to be alone, to think about the changes in my own life situation, and to make plans about how to survive in a loving, caring way without my husband’s emotional support.

If you are a caregiver reading these words, and you don’t have a dear daughter to tell you this, let me tell you:  I know that what is happening to your patient is happening to you, too.  And you must take care of yourself because you are as important as every other person in your sad situation.  If you don’t survive, everyone loses.    My love and blessings go with you.

The sub-title to my book The Cqregiver’s Choice  is Find Strength and Serenity by Changing Your Mind.  Sometimes, as I read that sub-title, I think it sounds too easy–as if changing one’s mind were as simple as changing one’s shirt.  But it’s not simple to make changes in the way one thinks; it’s a lifelong job, and I’m still working on it.

One of the problems with mind-changing is that the main tool required is total honesty.  Do you really want serenity?  Or are you thriving on the drama of family upsets and your sense of being put upon as a caregiver?  Do you get a higher charge out of negative energy–constant griping, little feuds, gossip, gloomy scenarios–than you get out of positive energy?  Most of us do.  One summer, I decided that for the space of thirty days I would not say one negative thing.   I monitored my words and reported only positive, constructive happenings in my life.  I could tell by the end of the month that the people around me were bored stiff with me and my positive conversation.  To prove to myself that it wasn’t a personal thing, I then spoke to the same people in a different way, telling them of my little dramas and failures and the injustices done to me.  My listeners perked up right away, glad to hear my sad stories and to tell me of their sadder ones.  We love a good sob story.  Negative charge is quick and hot and interesting.

But when I was in the midst of caregiving, I didn’t have enough emotional stamina left to expend it in dramatic battles with myself, my patients, or the medical community.  Negative energy no longer gave me a lift.  I began to desire deeply a different way of dealing with the turmoil of  life. But I can’t give you that desire. Noone else can give you that desire.  Only you  can change your mind.  Yet if you truly want to calm the burning in your stomach, to sleep at night instead of re-running the day’s tragic moments, to find the peacefulness that allows you to deal with caregiving in a sensible, productive way, you can do it.

First, be honest.  Examine what’s in your mind.  Because my conversations with other caregivers have shown me that relatives can be a huge negative problem to caregivers, I suggest that you begin with your perception of your relatives.  In your stubborn desire that they should help you in the caregiving, have you overlooked situtations in their lives that preclude helping you?  Are they too far away, too broke, too emotionally or physically fragile?  Was their relationship with the patient unpleasant or more difficult than yours?  Maybe it’s true that they can’t help you.  But even if the truth is just that they won’t help you, can you change them?  Be more  honest.  Would you rather keep up the old exhausting pattern of fighting with them than to change your mind?

Or take your patient.  If your loved one has a terminal disease such as my mother’s Alzheimer’s disease or my husband’s cancer, will it do you any good to deny that the patient is truly ill, to refuse to accept knowledge of the condition and its likely outcome?  Denial is like a dense smog that prevents your seeing how to take practical, loving action in the present.  There is something wondrously calming in saying, “What is IS.”  When you can see the problem clearly, you can begin to see realistic things you can do to deal with it.  When you accept, for instance,  that the doctor isn’t ever going to be immediately available to answer your questions, you find other ways to get information from him, and you learn what you can do on your own to aid your loved ones.  No point in dialing the phone again and again, feeling exasperated and neglected, if your doctor is at a clinic on the other side of a mountain pass (as our doctor often was.)

There are tricks to reforming one’s own mind.  If you deeply desire to be more serene, your mind will finally help you, but you have to dig different channels for it.  Notice when you start down a rut of negative thought.  Stop.  Picture something that brings you pure pleasure–an object, a person, an activity.  See yourself stepping deliberately out of the rut and following the object of peace and pleasure.  If your mind wants to veer back to the rut–the chasm–and it will, deliberately stop it again and renew your positive picture.  Every time restate your desire to feel peaceful.  Finally, your mind will be moved by your desire and it will respond to your re-channeling.  All of the good things about positive energy will be your reward.  You’ll sleep better, be more creative, be more productive.  But I can’t do this for you.  The powerful truth is that you are in charge of your own mind.