The end of life is a challenging time both for the person who is dying and for the family, friends, and loved ones who care about them.
Barbara Karnes
End-of-Life Care Expert
End-of-life care expert and educator Barbara Karnes says there’s value in the hours, days, weeks, and months before death.
While Karnes said it’s good to cry, she says it’s important not to “miss this wonderful opportunity of saying goodbye for the last time.”
Karnes educates families on what to expect as their loved one is dying. She helps reduce the fear and uncertainty of the experience for them.
Karnes is a retired hospice nurse, and her book, “Gone From My Sight: The Dying Experience,” known as the Hospice Blue Book, has sold 35 million copies and is available in 13 languages.
Talk to them
Karnes says it’s important for the loved ones to initiate communication as the dying person is
withdrawing and they’re less communicative.
“This is our opportunity to go in and talk to the person that is dying, particularly in the days to hours before death,” Karnes said. “A person is going to be non-responsive. It isn’t about them, answering us, it’s about us, talking to them.”
Her advice is to talk to the dying person about “Everything you’ve ever wanted to say to them,” Karnes said, including the good and the challenging times.
“Life is a billion-piece jigsaw puzzle,” she said. “The person that’s dying is trying to put those pieces of their jigsaw puzzle life together.”
Fighting helplessness
From the moment of diagnosis, patients and loved ones begin the grieving process. Karnes called it, “anticipatory grief.”
Once the loved one dies, those grieving are in shock initially. They’re just going through the motions. But once the numbness wears off, family and friends start the grieving process, which is different for everyone.
Difficult conversations
The person dying and their loved ones will likely have difficult conversations such as discussions about a living will and funeral plans.
Often emotions get heated but Karnes cautions families to be respectful of the dying loved one’s wishes.
“This is an opportunity for you to shelve what you’ve probably had your whole lifetime,” she said. “Shelve it and support mom or dad or whoever sharing this experience. “
She said end-of-life workers can help families navigate these difficult conversations, helping, all those living to have “a sacred memory of this experience that they will carry with them forever.”
Grieving
“Grief is a whole bunch of emotions, all wrapped up into a package,” Karnes said.
Often people wonder how they’ll grieve their loved one’s death. She says the way a person normally expresses emotions will be the way they grieve the death, such as running away or getting angry.
“Grieving is such a normal part of life,” she said. “We tend to think that there’s something wrong with grieving. Grieving is, ‘I am so sad that my loved one isn’t with me anymore.’
“And we have to learn how to go on living without this special person in our life. Grief is not pathological. Grief is not abnormal. Grief is a normal part of life and life experiences,” Karnes said.
Reframe your mindset
When the death first happens, the loved ones think about that person and the death all the time. Karnes says the intensity of the relationship will also affect how much and how intense the grief is, especially at first.
“Grief is like a wound,” she said. “At first, it’s a big open gaping, ‘I’ve slashed my arm’ huge wound, that I feel all the time. And gradually that wound begins to heal. When it’s healed, and it heals from the inside out. A scar forms where that wound was.”
When something triggers you about the person, it’s like touching the scar. But over time, the scar is less painful.