]]> http://blog.newsok.com/lifeisreal-charlotte/2009/03/29/a-word-to-the-dying-in-the-words-of-poets-and-others/feed/ 0 http://blog.newsok.com/lifeisreal-charlotte/2009/03/27/high-stress-good-self-care/ http://blog.newsok.com/lifeisreal-charlotte/2009/03/27/high-stress-good-self-care/#comments Sat, 28 Mar 2009 03:06:01 +0000 charlotte lankard http://blog.newsok.com/lifeisreal-charlotte/?p=43 When a family is in a period of heightened stress, such as living with a critical illness, good self care is important.   The following are some suggestions that will help.

Linda calls  palliative care, a new word for love.   I am using this space to share with you some of her thoughts on this subject because any family who knows they are facing the end of someone’s life is wise to consider it.     

Palliative care focuses on relieving or reducing symtoms of a life-limiting or life-threatening illness.  The most important part of that for many people is pain managment.   With improved medical knowledge and techniques, people no longer have to suffer when in the last stages of an advanced illness.  Not only does it relieve pain, it helps with loss of appetite, nausea, weakness, shortness of breath, bowel and bladder problems.

In addition to physical needs, palliative care also addresses psychological, social and spiritual needs, which are equally important at the end of life.  By treating all of these needs, the family members, as well as the one dying , are able to attend to the personal unfinished business of their lives.

In one of her columns, published in the Oklahoman in 2002, she tells the story of the widow of a physician who spoke of her husband’s last days and the palliative care their family received.

The lady recognized the hospice physician, nurse and social worker who took care of all the “things that got in the way – the medical equipment and the pain control and the insurance company.”   With those things taken care of and with the help of a chaplain, her husband spent his remaining time and energy in a spiritual journey toward peace and acceptance.

Palliative care is appropriate for anyone with an active, progressive and life-limiting illness.  It can be provided at home, in a hospital or at a nursing home.   If you want to know more about it, ask your physican or other health care professional or contact one of the many Hospice organizations in our state.

Linda Edmondson says, “When we enter this world, we are surrounded by love, comfort and care.  Don’t we deserve the same when we leave?”

Instead of greeting her daughter warmly and telling her how relieved she was to see her, she did what mothers often do when they are afraid – she scolded her.  “Where have you been”  Why didn’t you call? Didn’t you know I would be worried about you?”

The little girl explained that while walking down the street, she saw her friend Sally sitting on the curb crying because she’d broken her doll and she stopped to help her.

The mother’s frown turned to a soft smile and she said, “Oh, so you helped her fix her doll.”  “No,” replied the girl, “I couldn’t fix her doll and so I sat down and I helped her cry.”

Sometimes there is someone we love with cancer and it can’t be fixed, but sitting beside them and helping them cry is a good thing to do.

Instead of embracing her warmly and telling her how glad she was to see her, she did what mothers often do when they are afraid – she scolded her,  “Where have you been?  Why didn’t you call? Didn’t you know I’d be worried about you?” 

The young girl explained,  “As I was walking home, I saw Sally sitting by the curb crying because she had broken her doll and I stopped to help her.”

The mother ‘s frown turned to a soft smile and she said, “Oh, so you helped her fix her doll?”

“No,” said the little girl, “I couldn’t fix her doll, so I sat down and I helped her cry.”

When a friend or family member has something broken that we can’t fix, sitting beside them and helping them cry is a good thing to do.

Are you good at “laying ears” on people?  The most basic and powerful way to connect with any person is simply to listen.   Put away any distraction.  Be present not only with your body, but with your eyes and ears and just listen.

Cancer patients particularly appreciate this.  They are experiencing a multitude of feelings – anger, fear, disbelief, hopelessnes.  Random thoughts are coursing through their minds - remission,  suffering, hospice, death?   Their whole world has been turned upside down.  

If you will be quiet and present and truly interested, they may tell you what it is like -  and there’s nothing to do but simply receive them and care about them, without  feeling a need to give advice or tell your own stories. 

When someone is in pain, saying “I’m so sorry,” and meaning it is enough.

Following are some thoughts to guide you through the days ahead.  The suggestions come from James E. Miller’s little book, WHEN YOU KNOW YOU’RE DYING.  To read it in depth, it can be ordered by any bookstore or directly from Willogreen Publishers. 

*BE WHO YOU ARE.  You are still the same person you’ve always been.  You have the same personality, the same idiosyncrasies, the same likes and dislikes, the same memories. 

You are more than your illness.  While the disease seems to have taken center stage – doctors study it, measure it, treat it and talk about it and family and friends want to know the details – do not let your disease define you. 

You are more than your body.  While everyone may concentrate on what’s happening to you physically, you always want to stay in touch with your mind, your heart and your soul.

Understand people may treat you differently, either consciously or unconsciously, and their acting that way is about them.

*  FEEL ANY AND ALL OF YOUR FEELINGS.  You may not have all the following feelings, but it will be common to have many of them  - fear of what will happen before you die and after you die, fear of pain or disgurement or abandonment.  You may become listless and depressed, shocked or confused, anxious or panicky, helpless or lonely.  You may feel hurt or angry or even enraged, guilty or ashamed and envious of others.  There may also be relief, love, wonder, pride, even joy. 

Your feelings will be unpredictable and are likely to be intense.  You will grieve.  The losses you are facing are immense – health, family, home, work, security, relationships. 

You have permission to feel whatever you feel.  Verbally or nonverbally, people may ask you to hide or deny your feelings because they are uncomfortable, not because they don’t care, so find those people who really understand you and can allow you to be real with them.  Support groups are helpful to many. 

Remember feelings are neither right nor wrong, but simply a sign that you care deeply, that you value life and love and that you are taking seriously what is happening to you. 

*  MAKE YOUR NEEDS AND WANTS KNOWN.  You may not want to appear weak or to inconvenience others or you may feel selfish and it may take special effort to allow yourself to depend on others, but that’s one of the tasks before you.

Needs may be physical, emotional, social  – sometimes desiring company and sometimes needing to be alone.  There may be spiritual needs and environmental needs and your needs will change – what you desire one day, you won’t the next.

Others cannot know automatically what you need – they’ve never been where you are and they are not you, so you must tell them- simply, directly and honestly.

Remember you are not the only one who feels helpless, so in meeting your needs, they can meet their needs as well.

*  LET WHOEVER IS CLOSE TO YOU TAKE THIS JOURNEY WITH YOU.  You need not travel alone and you will discover who can go with you  – family members or a family of the heart.  You may have a large group and you may have only 1 or 2 – there is no right number, it is entirely up to you.  Time is limited so don’t try to spread yourself too thin.

Different people will meet different needs.  When you’re lonely, someone can give a reassuring touch.  When afraid, a comforting embrace.  When feeling down, a sign that someone cares.  If you want to give up, a reminder of how you’ve persevered before and where your strength lies today.  Someone else may help you sort through your questions and another can give confirmation that your life has mattered and you will not be forgotten.

Others will need you, too – to spend time, to say things they haven’t said, to rectify a situation or share memories. 

Make your end of life decisions.  Do it while you are still alert – financial decisions, a will, the disposition of your body, a funeral or memorial service, advance medical directives, a living will.  Notarized copies need to be given to your physicians, the hospital and close family members.

*EMBRACE THAT WHICH PROMOTES YOUR WELL-BEING AND GROWTH.  Now is not the time to delay your satisfactions.  It is time to live to the full, whatever that means for you.   Ponder the following questions:  What makes you happy?  What soothes you?  What energizes you?  What makes you laugh?  What nourishes you?  What gives your days meaning?  What inspires you?  Who loves you? 

*LET GO OF THAT WHICH BLOCKS YOUR WELL-BEING AND GROWH.  Discarding a bad habit or a destrucive behavior, releasing yourself from an unncessary obligation or making peace with yourself.

You may want to let go of certain people who drag you down, who are bitter or belittling or hostile.  This is not the time for you to try to take care of everyone else’s feelings and needs.  It is dangerous and impossible.  Everyone must take responsibility for themselves.

This is also a good time for forgiveness – to ask another’ s forgiveness or to forgive yourself or someone else.

* TELL YOUR STORY.  Your life has had high points and low ones, periods of excitement and strange twists of fate.  You know things no one else knows, you remember things other have long forgotten.  Reminisce. Preserve your memories. Organize and share your thoughts.   What are your beliefs? Your most important lessons learned?  What would you do differently?  What would you never change?  What would you like your grandchildren to know about you?

* DECIDE WHAT YOU WANT TO DO, THEN DO IT.  How do you want to spend the days you have?  Make a dream come true, visit a place you’ve always wanted to go, leave a legacy that will survive you.  

Don’t let your life become too hectic.  Pace yourself.  Stay flexible.  Be gentle with yourself.  Stay in the present.  Breathe deeply.  See vividly. Touch lovingly. Concentrate on being ever bit as much as on doing.  Live your dying – with gusto, with your heart flung open and your arms spread wide.  Live as though there no tomorrow, and then tomorrow, live that way again.

*NURTURE YOURSELF SPIRITUALLY.   Set aside time, let others know of your intention.  Quiet helps.  You may turn to formal religious practices or choose other ways.  Do what works best for you.  While all your questions may not all have answers, you may find they don’t have to. 

* DARE TO HOPE.   If you’re concerned about physical discomfort as the days unfold, discuss pain managment control with your caregivers.   You may hope to maintain your dignity as best you can, hopes about where you will spend your closing days, hope to live for a long, long time - sometimes that happens.  You may hope this will be a time of healing relationships or inner healing – release from past deeds or old wounds, painful inadequacies or hurtful thoughts or achieving inner peace and outer calm.

The poet Rabindranath Tagore once composed these words: Let your life lightly dance on the edges of time like dew on the tip of a leaf.

Author James Miller writes:  Let your life dance lightly on the edge of this time and on the edge of the time to come.  Let it dance lightly with those you love and with those who love you, and with all those who have ever loved you.  Let it dance as long as it will and wherever it will and in the way that it will.  Let your life lightly dance for all to see today and for all to remember tomorrow.

May your dance be the dance of a lifetime.  And beyond.

*  Connect by talking.  Speak as an equal.  Say what you think.  Express what you feel, but don’t push them.  If tears come that is good because it is a sign you care and you wish this wasn’t happening.  Be honest. Talk simply. Avoid secrets. 

*  Connect by listening.  Real listening takes work, but it is the greatest gift you can offer. Listen without interupting, judging or shying away. 

*  Connect by encouraging memories. This helps the dying person make sense of their time on earth.  They want to feel their life mattered and their influence will not be forgotten.  Leaf through scrapbooks and old letters with them.  Look at pictures, tell and re-tell favorites stories.

*  Connect by touching.   Hold their hand or touch their arm or shoulder or head.  Stroke them, massage them, hug them.  Touching lets them know you are with them in every way possible.  Even when they can no longer speak, speak to them with soothing words or a gentle caress.

*  Connect by just being present.  Sometimes the most thoughtful way to reach out is by not saying anything or doing anything.  By sitting or working quietly in the same room,  you are communicating “I enjoy being with you.”  “Iam right here.  I care.”   The dying one wants to know they are not alone.  It’s up to you to tell them in as many ways as you can.

 8.  Your relationship will change as you go.  Too much will be changing around you for a change not to occur.

*  A special closeness may develop by addressing problems that have separated you or speaking words of appreciation or love you haven’t spoken in a while, if ever. 

*  The dying person will probably depend on you more.  While it’s important not to take from them their power or freedom, they may come to count on you in ways they have not in the past.   They may need more physical assitance or emotional support, help with planning or taking over for them in various ways.

*  Eventually the dying person will begin to withdraw.  They will start to turn inward and pull back, want to see fewer people, desire more quietness.  This does not mean they are negating your relationship.  They are not withdrawing from you personally so much as from life itself.  They know you cannot go where they’re going and they’re doing what they must. 

*  The one who’s dying will want to know you’re with them to the end.  Even as they pull away, they will want to feel they’re cared for and they have your blessing to go.  It may help them to hear those very words.  It may help you to say them.   They will sense you’re with them when you whisper your love,  promise your remembrance, hold them with tenderness, honor them with tears. 

 9.  Making important decisions early can head off significant problems later.  While you do not want to rush them to make decisions because it takes a while for the reality of what is happening to set in, you will benefit from handling them as early as possible, while their thinking is still clear and before others are forced to make decisions for them without adequate information.

 Decisions to be made:

*How the person wants to live and die.  Execute a living will.

*Whether they want a burial, cremation or their body donated to science.

* Where and when a funeral or memorial service will take place.  Who will speak?  Any special readings or music?

* Preparing a will and giving instructions about one’s assets and family matters.

10.  Know this is a natural time for inner searching.  People who know they’re dying often become more reflective, pose questions that are hard to answer, worry about what will happen after they die, and talk more about spiritual experiences.   Chances are you will do the same. 

Sometimes it is helpful to find a caregiver for yourself – a safe person to talk with or a support group.   Some keep a journal of their dreams  and prayers, carve out some time each day to be quiet and meditate, listen to music that inspires them or read scriptures and pray.

11.  This experience will extend beyond the end of your caregiving. No one knows what they will feel or how they will behave when the one they love dies because even when we think we’re ready, it is still a shock when it happens, requires some adjustments and still hurts.

 12.  For all the turmoil and sadness, you still have reason to hope. As you attend their dying, you can hold hope for their continued comfort, be optimistic they’ll use this time in positive ways  – perhaps resolving the past or enjoying the present, finishing crucial projects or starting new ones, drawing close to others or to a Supreme Being.  

You can hold hope for yourself that you’ll keep doing the best you can under the circumstances.  You can trust you’ll find resilience and strength, acceptance, understanding, assitance and companionship when needed.

You can trust that as you prepare for your loved one’s death, you will become better prepared for other deaths that will surely come, including your own.

You can be aware that this experience will influence how you live as well as how you die. 

“As you walk softly and bravely with your loved one as far as you can, you will know that beyond all doubt this journey has a name.  Its name is love.”  James E. Miller

 These 12 thoughts to guide you on the journey when someone you love is dying, are excerpts from a little book by James E. Miller, titled ONE YOU LOVE IS DYING. Willowgreen Publishing. 

Those words make me think of “hang time”.  Hang Time in football is when the ball is in the air and for a few seconds stays there, leaving those on the ground unsure exactly when it will start to descend. 

 That is a good way to describe those living with someone who is dying.  You hold your breath knowing it will happen, yet not knowing exactly when, and the knowledge of that is threatening, exhausting and frightening - and you will grow weary.  So what do you do in the meantime?

Author James Miller suggests 12 things to remember.  Following are the first six.

1.  Understand this is one of the most stress-producing jobs there is.  At the same time, it should be not be painted as impossible.   It is a time when you must do great self care.  Pace yourself.  While all you feel now is distress, you can also know you will grow from this experience. Remember you’ve been through difficult times before and you will also survive this.

2.  You will have strong and perhaps unusual feelings.  Sorrow, guilt, anger, confusion, affection for the one you love, respect for what they’ve done and are doing, joy for what you can celebrate and share, proud and even gratitude when you realize you’ve been given another day. 

Whatever they are, they need an outlet.   You can talk it out - with an individual or a group; write it out - letters or journaling, expressing yourself through music or art, making something with your hands; cry it out.  Just do not try to bury the feelings.  They will come out at some time and in some way, so be in charge of how you want that to happen. 

3.  The dying person will be as they’ve always been, only more so.  When told they are dying, they will respond in their own unique way.  Some are visibly upset, others stoic.  Some are asontished and others take it in stride.  Some reach out to others.  Some withdraw into themselves.

As a rule, they will be the same kind of person now as before.  They will prefer to live fully as long as they’re able and to be treated as very much alive.

 4.  You cannot do everything yourself.  Let others share the load for your sake.   This is not a sign of weakness, but of wisdom and maturity.  Let others share the load for their sake.  They too can benefit when given opportunitites to demonstrate their concern and love.  Let others share the load for the sake of the dying person.  It helps them knowing they matter to others.

5.  To be a good caregiver, you must take good care of yourself.  Honor your physical needs – eat balanced meals, get plenty of rest breaks and adequate sleep, exercise regularly, learn and practice relaxation techniques.  Cultivate efficiency – Do what is necessary, find shortcuts in your chores, organize meals, errands and schedules to save time and preserve energy and allow others to assist you.  Set boundaries – make time and space for yourself, do not try to live up to other people’s expectations.  As much as is possible, maintain some of your everyday routines, stay in touch with friends and remain involved with life in ways that nourish your mind, heart and soul. Take time away.  Do things that give you a break and refresh you – a movie, a meal with a friend, a massage, a walk outdoors. Make room for laughter – watch funny movies, TV comedies, joke with one another, remember humorous incidents from the past, giggle or guffaw, but do it out loud.  Detach from results – recognize what is beyond your control.  Stay in the moment - concentrate on what the present offers, be deliberate in what you are doing, breathe in that which satisfies you and breathe out your disappointments. Savor happiness. Live.

 6.  The one who’s dying is in charge.   The person dying gets to make certain important decisions on their own.  They should be informed about the decisions of their medical team, their disease and prognosis and have the right to make decisions about the kind of care they will receive.  Your role as a caregiver is to encourage, support, and carry out the decisions they make.  You are not to act for them without their agreement.  You are not to speak for them without their permission.  You are not go think for them unless they can no longer think for themselves.  This is their show.  Let them be the star.

 The next blog will list 6 more things to remember. 

 Jim Chastain and his family and friends are in this process.  Those of us reading over his shoulder have much to learn and hopefully much to talk about as we face his dying experience openly and honestly.

Much has been written about dying and grieving, but seldom do we have honest conversations about them.  Typically we try to avoid even saying the words because of the painful feelings that arise, but avoiding doesn’t stop the pain and  it leaves us ignorant of how to move through the process.

I will be sharing the words of others that are meaningful for me.  I encourage you to share your own readings and thoughts that have meaning for you.  In so doing, we learn and help and support each other. 

Following are some words for you to ponder by Jean Vanier, a philosopher and former naval officer: The death of someone we love is always painful.  To love is to carry another within us, to keep a special place in our heart for him or her.  This spiritual space is nourished by a physical presence; death, then, tears out a part of our own heart and puts us in a place of loneliness.  Those who deny the suffering of death have never truly loved; they live in a spiritual illusion. 

To celebrate death, then is not to deny the pain and the grief it involves; it is to give space to live it, to speak about it, and even to sing of it.  It is to give mutual support, looking the reality in the face.”