Augustine of Hippo wrote: There are days when the burdens we carry chafe our shoulders and weigh us down; when the road seems dreary and endless, the skies grey and threatening; when our lives have no music in them, and our hearts are lonely, and our souls have lost their courage.
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.
When one we love has been told they are dying, we begin the grieving process. Yet at the same time we continue to make memories and cherish their physical presence that is still with us.
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.”
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.