August 2006
by Vicki Rackner MD
“Dad was a tough farmer. Even after he got cancer, he was out in the fields every day.” Jim remembered his father's final days. “He lived months longer than the doctors said he would. I held onto hope until the very day he died. I was sure Dad would live 10 more years.”
Hope is a critical ingredient in the lives of caregivers and their loved ones. It's human nature to hang onto two basic hopes to which Jim clung – the hope of overcoming illness and the hope of delaying death. Although this fantasy is attractive, the reality may be that your loved one faces a steady medical decline, a life-threatening illness or impending death. Yet no matter how desperate the situation, I believe there is always hope. Hope is the magical salve for the suffering of caregivers and their loved ones.
Hope a word tossed about freely. You may have used it today. “Hope you have a good day.” “Hope to see you soon.” “Hope it doesn't rain.”
Consider a vase filled with flowers from the garden. Over the season of a garden, different flowers are available for plucking. Even in winter when there are no flowers in sight, a cut twig placed in the vase reveals its beauty.
Hope is like the vase that contains your sweet-smelling colorful dreams. Dreams, like flowers, change over the seasons of life and the stages of caregiving. There is always a dream that can be placed in the vessel of hope.
I think of hope as the optimistic belief that you can expect a better tomorrow. Sometimes that better tomorrow happens as a result of something that changes in the outside world – such as a new drug or unexpected help. Sometimes the better tomorrow arrives because you see things from a new perspective. You recognize you always have options.
Hopes and dreams become the guiding light for the tough choices that you and your loved ones face.
Here are some tips for hanging onto hope:
Define your hopes. If you had a magic wand, what would you wish for? Maybe it's turning back the sands of time and taking away the car keys from your father instead of sitting at his hospital bedside where he is recovering from the car accident he caused. Maybe it's imagining that you'll turn on the news and learn of a new miracle cure for the cancer that's taking over your mother's body or for the dementia that's erasing your grandmother's memories. Hope might be something simple like a good night's sleep for you and your loved one. You might experience a sense of relief when you give a voice to your secret longings, wishes and dreams. Say it out loud, “We could use a good night's sleep.”
Define the reality. Miracles really do occur. I have seen them in the course of taking care of tens of thousands of patients; however, miracles are miraculous. Most people experience likely events. Grasp an understanding of your current reality based on what's most likely to happen naturally.
Looking at the probable course does not mean giving up on miracles. Even if the survival rate for a cancer is 1%, one out of 100 patients survives. Why shouldn't that person be your loved one?
When you define the most likely outcome, it helps you decide where to place your hopes. A family doctor told of a conversation with a loving mother whose 6-year-old child had a relapse of leukemia after a bone marrow transplant. There was an experimental treatment offered halfway across the country. The mother wanted to know where to take her child: to a new hospital across the country for lots of “pokeys” as her son called them, or Disneyland to enjoy the final days of his life. Does she hope for a cure, or for the fullest remaining days of her child's life?
Recognize your loved one's hopes may be different than your own. The mother of the 6-year-old made the medical choices for her son. What if the person with the leukemia is your father, who is competent to make his own medical choices? Maybe you cannot bear the thought of losing him and hope that a new treatment will cure him. Maybe your father shares that perspective. However, what if he considers experimental treatment with certain discomfort and an uncertain benefit and decides he would rather live out his days enjoying the grandchildren at the lake home? You may find it difficult to support him.
You can begin the conversation like this, “We never thought we'd be facing this situation. It looks like you have considered the medical options and you made a choice to spend your days doing the things you love. I'll do everything I can to support that choice.”
You do not need to burden your loved one with your disappointment that he has placed hope in a different place than you would if you were in his shoes. That's when you turn to a trusted friend and say, “I wish Dad would make a different choice. I want him to fight. I'm sad and angry that he's chosen death.”
Your caregiver hopes and dreams are important, too. If they're different hopes and dreams than those of the person you're supporting, find a friend or a therapist or clergy to help you work through disappointment, grief and loss.
Honor your loved one's hopes. As a caregiver, it's important to understand that your loved one is the patient. It's his body and his life. As much as you think you know what the best choice is, your job is to help your mom or dad, brother or sister, friend or child, realize their hopes. That can be hard.
Tony remembered his mother's final days. “She was in pain, because the cancer had weakened her bones. She didn't want to take the pain medicine because it made her sleepy. She wanted to be awake, talking to us.” Tony's mother's hope was to be able to enjoy the last moments with her family, yet Tony hated to see his mother in pain and hoped for better pain control. I suggested that he talk with the doctors about ways to deliver pain medicine that was not as sedating so that both Tony and his mother could achieve their hopes, something that came to pass.
Mourn the loss of the old dream. Gretta said, “Mom had always hoped to live all of her days in her home filled with the memories of Dad and small children and happy holidays...and not so happy holidays. It just wasn't safe any more. We moved her to a terrific retirement community that has everything she wants, including a beautiful garden. Still, she's sad because it's not what she had always imagined.” You too could have a dream of a healthy, independent loved one that's hard to let go of. The loss of a dream can be as painful as the loss of a loved one. Mourning the loss of a dream brings healing.
Create a new dream. You can still have hopes and dreams! They're just different. Maybe the hope for cure is replaced with the hope to attend a family wedding or a hope for days or hours or moments free of pain. Maybe it's the dream that your fragmented family will come together and heal old wounds around the death bed.
State your dreams as attaining something you want rather than avoiding something you don't want. “I want my mother to eat enough to maintain her weight” is different than “I don't want her to lose weight.”
As medical conditions change, it's important that you and your loved one revisit the dream. “Dad, I know you were hoping to walk after your stroke, and you've worked as hard as you could to make it happen. We can still figure out how you can get fresh air and some exercise you so enjoyed when you took your daily walks.”
If you're disappointed about the course of events, ask, “Is this the loss of a dream, or a hope I can fulfill?”
Focus on your loved one. Caregiving is first and foremost about supporting the person you love. Yes, you as a caregiver have hopes and dreams. Maybe the heart of caregiving is the willingness to fulfill the hopes and dreams – the vase filled with brilliant blooms – of those for whom you care – whether or not you hold the same vision.
Hang onto hope. No matter how desperate the situation, there is still hope for the dream. The dream will change as the condition of your loved one changes. There's always a flower to put in a vase. There's always hope.
Copyright © Vicki Rackner MD, 2006
Reframing Hope