If you or someone you love has been told you will die - sooner rather than later – there are some normal responses you may experience. According to Elisabeth Kubler-Ross, when faced with major change, be it impending death or a major change in relationships, finances, career, or health, certain responses may arise. She categorized them as the “five stages of grief”:
1. Denial. We may dig in our heels and refuse to accept that something has changed.
2. Anger. We might rail at people or institutions, at the audacity of life, or God, for handing us something different from what we want.
3. Bargaining. We can try to make a deal with life, the universe, or a Higher Power, hoping to get what we want.
4. Depression. We could feel that everything is futile when we sense our underlying helplessness.
5. Acceptance. Only after we have exhausted each of the other 4 responses are we ready to accept that change has occurred.
Acceptance comes in many ways. Joseph Campbell said, “We must be willing to relinquish the life we’ve planned so as to have the life that is waiting for us.”
Mental Health professionals, following the Oklahoma City bombing, talked about finding a new normal.
My friend Jan Greene, who is also facing a sooner rather than later outcome, pondered that statement one day and said it suddenly hit her of the wisdom of finding a new normal and she shifted her thinking. Later she said, “I can’t imagine how much time and energy I would have wasted not seeing things clearly.”
Author Michael Stillwater says, “By facing our fears of dying, and making peace with our own life journey, we can have a more spacious, free and joyful existence.”
He believes it is the embracing of our losses, rather than resisting them, that strengthens our courage to more easily accept when surrender is the only option.
When we are in the throes of these major changes, we often feel as though we are lost and cannot find a compass or a map to guide us. That is normal. It is my belief however, that as we share our stories we help other people on a similar journey.
That is why this website is being offered by the Oklahoman. That is why Jim Chastain, Ken Raymond, John Clanton and I are doing what we’re doing. We invite any of you reading to share your own experiences, believing that if we can make our painful times useful to someone else, they will not be wasted.
A Ted Koppel documentary featured Leroy Sievers, a cancer patient walking in similar shoes as Jim. Following are some of his thoughts – thoughts that allow you to better understand challenges that cancer patients face, but also to witness the determination that most of them have to not give up. When I heard Siever’s words, I was reminded of my friend Jim Chastain when he and I were visiting with a group of the Oklahoman editors about telling his story. As we drew the meeting to a close, Jim said, “The story may be about my dying, but I want you to know I’m going to do everything I can to live!”
Following are Siever’s words, but they give you a glimpse of that kind of determination:
It all comes down to strength. Where do we find the strength to take one more pill, go through one more procedure, wait for the results of one more scan? How do we find the strength to keep moving when the pain is strong enough to bring us to our knees?
We’re all stronger than we think. But I’m talking about something more. Where does the strength come from to keep fighting, even when the odds may be stacked against us?
For me, I think some of it is just stubbornness. I’m not going to let the disease beat me. Or at least I’m going to make it work damn hard to get me. We lose our strength sometimes. Over the past few weeks, I admit that I’ve given into despair. There have been times when it all just seemed too much.
But I’ve never thought about giving up. Back when I was working in Latin America, one of the rules was that if you were stopped at a roadblock, you never got on your knees. Others, including journalists, had been forced to kneel. Then they were executed. So the thinking was, never get on your knees.
Well, I may have bad days. I may be weakened by the pain. It may be all I can do to fight through the day. But with all of that, I’m sure as hell not getting on my knees. Ever.
I see that same kind of determination in my friend Jan Greene who is fighting the same battle. It is sometimes the small things that do it, like a few weeks ago when she had her grandchildren spend the night. Their bedroom is just across the hall from her, but when she awakened the next morning, she found them both in her bedroom – Emily curled up beside her and Benjamin on a blanket by the side of her bed.
Not a moment she would wanted to have missed and so she, like Leroy Sievers and my friend Jim, is absolutely determined to not get on her knees. Ever.
When a person is dying, he or she is not the only one affected, not the only one who has lost the lifestyle that was formerly shared, not the only one who has been dealt a devastating blow. The family member who is the main caregiver suffers as well.
The health care literature says caregiving is satisfying work, because it is an expression of love for someone who is important to you. That is only part of the story. Caregiving can also be difficult. It involves not only the task of doing, but also the task of coping, figuring out creative solutions and working at how to keep one’s head above water.
If the illness is prolonged, a normal caregiver may also feel other feelings – tied down, isolated, lonely, frustrated, sad, pushed beyond physical endurance.
Then there are those feelings of guilt for sometimes acting in a resentful, angry way, feeling sorry for yourself about being robbed of your own life and questioning what you have done to deserve such misery – and then feeling guilty for feeling any of those things.
As the patient grows weaker, the caregiver takes over. Whatever the patient can no longer do, they do. At the beginning both were horrified together, but gradually they may emotionally move apart because they are on separate journeys through grief.
“How is he/she doing?” caregivers are often asked, but at some point they will wonder why no one ever asks about them. It is even common to feel as though they are losing their own identity and no longer exist.
It is normal to feel angry with God, which does not mean a person has lost their faith. It just means the caregiver is exhausted and longs to be rescued. It is normal to feel angry at the doctors, which does not mean they are no longer trusted. It just means desperately wanting a cure and a longing to have the old life back.
It is normal to feel angry at other family members who may not be adequately sharing the responsibility of caregiving, which does not mean they are no longer loved. It just means help is needed.
A common phrase for this is compassion fatigue. It is a normal part of the process and does not mean the patient is no longer loved nor cared about. What it does mean is that caregivers must make a commitment to care about themselves as well and understand asking for help is not a weakness. It is a necessity.
Some people are better at asking for help than others, but family and friends need to be as alert to the wellbeing of the caregiver as they are to the needs of the patient.
Help with proper nutrition – casseroles in the freezer, healthy snacks and often staying with the patient while the caregiver gets out of the house to share a meal with a friend.
Other things for which to be alert are adequate sleep because lack of rest is a major contributor to depression and exhaustion and regular exercise because it is a guaranteed stress reducer.
If the caregiver is not helped to manage their stress level, they too may become physically ill. Headaches, ulcers, gastrointestinal problems, muscle spasms are common.
A therapist or a support group can be a lifesaver for some. A caregiver needs a safe place where he or she will not be judged to voice the confusion of feelings that begins to run rampant. If they do not have a place to be honest about their own feelings, they will eventually become re-active – wanting to escape or lashing out in anger.
The bottom line is caregivers need care too. It is not selfish. It is surviving.
“Somebody ought to tell us, right at the start of our lives, that we are dying. Then we might live life to the limit every minute of every day. Do it, I say, whatever you want to do, do it now.” Michael Landon.
My mother died January 30, 2007. She was 98 years old. As my family gathered to honor her, a few things became very clear. The way my mother showed her love for us was by giving attention, kindness and laughter. She was a place where one could always go and count on being welcome and accepted.
My grandchildren who came to say their goodbyes to her are now old enough to understand at some point they will also be saying goodbye to me. And so we had the conversations about how my mother lives on in each of them and that when I die, a part of me will live on in them, too.
Then we switched to the importance of not taking life for granted, nor the people in it, living intentionally and being to our best ability the person we are created to be. It also led to some side conversations that began with the question to me, “Are you afraid of dying?” And so we looked at reality. Each of us will live, love, hurt, change, age, and die. No surprises about that.
I explained that I choose not to focus on the end of my life, nor to think I should feel good in every moment of it. And rather than worrying about what I may have to face, I choose to live it each day as it comes, believing I can handle whatever it brings.
After my children and grandchildren left, I gave those conversations more thought. I have come to the conclusion that even though my mother lived a very long time, it may not matter so much how long we live, but what we do with the time we have.
I hear people say, “When it slows down at work…” “When the kids are all aised….,” “When I retire….” We act as though we have unending amounts of time to do the things we dream about. But when someone you love dies, you are reminded life is now, this day will not be lived again.
A final gift from my mother is the reminder to pause and take stock of how I am living my days. Valentine’s Day is just around the corner and I am again reminded of the way my mother said I love you. She gave attention, kindness, laughter, and the offer of a place where one could go and count on being welcome and accepted. But it was not just one day a year, it is the way she lived her life.
Not a bad legacy.
An Advance Directive can vary from state to state. The Oklahoma Bar Association says Oklahoma’s Advance Directive for Health Care allows a person, 18 years of age or older, to inform physicians and others of their wishes to provide, decline or withdraw life-sustaining medical care and to donate specified organs when they have been diagnosed by the attending physician to be in a terminal condition, a persistently unconscious state, or an end-stage condition. The Advance Directive also allows you to appoint a health Care Proxy to make certain decisions on your behalf.
It is important a patient know they can change their mind at any time. A patient can revoke it in whole or in part and in any manner when communicated to their attending physican or other care provider or a witness to the revocation.
For more information on an Advance Directive in Oklahoma, check out the website www.okbar.org/public/brochures/advanced.htm.
Linda Edmondson, a friend who has long been a leader in end-of-life issues, agrees with me that when any family faces a critical health crisis, there are 3 crucial pieces they may want to consider: the need for an advance directive, the difficulty of deciding if/when hospise care might be appropriate and what palliative care is and how it can be helpful at all stages of a life-limiting illness.
I will write a separate blog on each of those issues and encourage any reader or professional in this area – who has “been there” – to share their personal experiences and any resources they found that might prove helpful to someone else.
WHAT CANCER CANNOT DO
Cancer is so limited.
It cannot cripple Love.
It cannot shatter Hope.
It cannot corrode Faith.
It cannot destroy Peace.
It cannot kill Friendship.
It cannot suppress Memories.
It cannot silence Courage.
It cannot invade the Soul.
It cannot steal eternal Life.
It cannot conquer the Spirit.
Somewhere Towards The End, a book by publisher and author Diana Athill, is a memoir that won the Costa Book Award for biography, given to writers based in Britain and Ireland. Written in her 80′s, she reflected on her life and as she comes to the end of the book she writes about the realization, ”… that from up here I can look back and see that although a human life is less than the blink of an eyelid in terms of the universe, within its own framework it is amazingly capacious so that it can contain many opposites. One life can contain serenity and tumult, heartbreak and happiness, coldness and warmth, grabbing and giving – and also more particular opposites such as a neurotic conviction that one is a flop and a consciousness of success amounting to smugness.”
Do not ask me why, but my thoughts immediately jumped to Jim Chastain and I realized that if we are not careful, all we remember about him is that he died at a young age.
His life, of course, has been full of all the things Ms. Athill wrote about. There has been tumult and heartbreak - cancer, chemotherapy, loss of an arm and now the reality that his time with family and friends will be much more brief than he’d imagined.
BUT….there has been much serenity and happiness as well – college was fun and he made friends like Don and Shelly Greiner, with whom he’s stayed close all these years.
College is also where he met and married LeAnn, followed by the births of Ford and Maddye and a law degree. Jim became a published poet and author. He is a screenwriter, a film critic and a bright and fun and zany man who loves life and when life did not go as planned, he was able to make it useful.
Jim looked for everything funny in his first bout with cancer which resulted in the loss of his right arm and he wrote an honest and thoroughly delightful book chronicling those experiences. Everyone should read it.
Now in another time of tumult with this new bout of cancer which threatens to end his life earlier than what he’d imagined, he continues to make those dark times useful. This time he has graciously and with great courage invited us to read over his shoulder and when we read what Jim or Oklahoman staff writer Ken Raymond is saying, it is important we read all of it – not just the bad, but the good, the loving, the friendships, the delight in his wife and children, the passion for writing and living and the determination to make it all count for as long as he has breath.
There is much to be learned from Jim and his family through this dying experience, but equally important is that there is much to be learned from the way they have lived and are living each day – following their passions, staying in touch with friends and always making new ones, loving and supporting each other, and being honest about the hard times – which come to all of us.
As Athill reminds us, the glass is never half empty or half full, it is both. As you read what may be Jim’s final chapter, be sure you focus as much on the full part as you do on the part that leaves us feeling empty and sad.
From Roger: ” Well, shut my mouth. I mean that literally. Here I am feeling sorry for myself and then I read today’s column. I literally shut my mouth, my whining and my self pity and once again reminded myself that my life could be a hell of a lot worse!”
“Teenagers need to be told the facts over and over. They need for their worries and concerns to be heard again and again,” says Dr. Wendy Harpham, Dallas physician, mother of three, and lymphoma survivor.
The teenage years can be a tumuluous time for children and their parents under the best of circumstances. When a parent has cancer, the stresses can be even greater.
Encourage them to spend time with their friends and to stay involved in extracurricular activities. This gives them a break from the seriousness at home.
Talk with them honestly and listen to them without interruption. Encourage their talking to other safe and caring adults – teacher, coach, minister, relative.
Teens should be informed when the circumstances change, so that additional support can be provided when needed.
Support groups with other teens going through a similar experience and/or investing in professional counseling is worth considering because they will learn some skills for moving through change and loss that will benefit them as they move into adulthood.
A good resource is the book When a Parent Has Cancer: A Guide to Caring for Your Children, by Wendy S. Harpham, MD.