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6 Caregiver Tips for Turning a Slow Death Into a Slow Dance

Choices made before a loved one's death don't neutralize the need to grieve for what's being lost, but they can make a huge difference in the pace and depth of caregivers' healing thereafter.
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Every day we hear sad and often shocking stories of people whose lives were cut short in an instant. For those left behind, the impact is sudden and instantaneous: One moment before, everything was fine, until a sharp knife cut someone out of their lives... in a flash.

What we don't hear as much about is the pain of caregivers who feel helpless when cancer treatments stop working and the issue isn't whether the patient will die, but when. Cancer will kill nearly 600,000 people in the U.S. this year. When cancer is winning, caregivers are often forced to watch a loved one dying one cell at a time, one organ system at a time, one day at a time.

Despite agonizing uncertainties, some caregivers manage to turn the dying process into a positive and even transformative experience for both patient and family members. There are six key tips from veteran cancer caregivers:

  1. 1. Acknowledge that you can't change the outcome.

This doesn't mean giving up; it means accepting that there is no further curative care that's available. The caregiver question, "Did I do the right thing?" is prevalent and painful among caregivers whose loved ones are dying. There is no one "right thing" about how to care for a dying patient; rather, the right thing is what keeps him comfortable and creates positive memories for the family that will need to carry on afterward.

Doing your best as a caregiver is about relaxing and allowing a fundamental key life experience to happen in the most positive possible setting

  1. 2. Keep the patient comfortable.

Today there are specialists in palliative care who can help relieve pain, nausea, and anxiety as death approaches. Not every oncologist is trained in these techniques, so seek out the specialists early and deliberately. Then, if curative therapies are causing more discomfort than benefit, you can stop those treatments with assurance that someone is looking out for the quality of your loved one's remaining days.

  1. 3. Speak the as-yet unspoken.

We often take for granted those we love. Now is an opportunity (however hard) to tell the patient the important impact she's had on your life and how much you've valued her presence. No matter how much time is left, tell the person how much he mattered and why. You'll be glad you did, and you'll be helping her relax as she lets go.

Also remember the advice of hospice experts that hearing is the last sense to go for people who are dying. Even if your loved one is no longer conscious, it's not too late to offer comfort and say precious good-byes.

  1. 4. Live every day with purpose.

Your loved one may have days, weeks, months, or even years of life left between the time treatment ceases and the time he or she dies. Take advantage of it by:

  • Traveling while health allows it.

  • Engaging with family members and friends.
  • Reviewing humorous or particularly memorable experiences together.
  • Bringing children in to visit and share their joy in life.
  • Doing things together that create positive memories that you can recall with pleasure later.
    1. 5. Discuss after-death arrangements openly.

    Talking about death openly seems to reduce the anxiety and fear. Hospice workers can be enormously helpful resources to reduce stress and actually create memorable humor.

    • Mike's wife could see Mike relax during their late-night conversation about whether he preferred cotton or linen for his traditional Jewish burial shroud. His answer was, "Linen, of course!"

  • Brian still remembers fondly a late conversation with his mother about how she wanted to be buried. Her answer? "Wearing nothing but my fur coat and my red spike heels." He still laughs as he thinks about her burial: He honored her wishes!
  • Doug's mom asked him, as he was dying, what he was thinking about and how he wanted to be remembered. His response led the family to create a program to help other pediatric cancer patients at a nearby children's cancer center.
    1. 6. Sustain final days in a comfortable setting.
    Many terminal patients prefer to die at home, often with family support from hospice nurses. Research highlighted in the
    found that dying at home helps improve the quality of life for patients and reduces the risks of post-traumatic stress disorder (
    ) for both patients and their caregivers.
    • For Carole's husband, the setting was the family beach house, where he could be surrounded by his wife and children.

  • For Keith's dad, it was the lake house where he could look out at his favorite fishing spots and the wildlife he so loved.
  • For Kathy's father in law, it was the first-floor bedroom in her house, with the family gathered around, the baseball game on TV, and fresh air streaming through the open windows. These caregivers have fond memories of final moments.
  • Even if the patient is in denial and unwilling to engage in some of these tips, do what you can to help make them happen. The goal is to prevent cancer from taking more than its share of life and happiness, especially from those who will be left behind. Choices made before a loved one's death don't neutralize the need to grieve for what's being lost, but they can make a huge difference in the pace and depth of caregivers' healing thereafter.

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