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Hopes & Dreams: A Critical Ingredient in the Lives of Caregivers and Their Loved Ones
By Vicki Rackner
It's human nature to hang onto two basic hopes: the hope of overcoming illness and the hope of delaying death. However, in many cases the reality is that your loved one faces a steady medical decline, a life-threatening illness or impending death.
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. Yet, no matter how desperate the situation, there is always room for hope and dreams. It is the magical salve for the suffering of caregivers and their loved ones.
Hope is 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. Hopes and dreams become the guiding light for the tough choices that you and your loved ones face.
Here are 7 tips for hanging onto hope:
- Give a voice to your secret longings, wishes and dreams.
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. Say it out loud, "We could use a good night's sleep."
- Define the reality.
In the course of taking care of tens of thousands of patients, I've seen miracles happen. However, most people experience likely events. Grasp an understanding of your current reality based on what's most likely to happen naturally.
When you define the most likely outcome, it helps you decide where to place your hopes. For example, a friend of mine who is a family doctor told me of a conversation between him and 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 his grandchildren?
You may find it difficult to support him. You do not want 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."
- Honor your loved one's hopes.
As a caregiver, it's important to understand that your loved one is the patient. It's his or her body and life. As much as you think you know what the best choice is, your job is to help your loved ones realize their hopes.
- 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 and 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 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 deathbed.
State your dreams as attaining something you want rather than avoiding something you don t want. As medical conditions change, it's important that you and your loved one revisit the dream. 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.
Always remember, 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.