Caregiving and the End of Life, Part 2

“The grief of caregivers is not a subject that’s talked about too much,” said Lamers, now based in southern California. “Physicians developed a way of guarding themselves against grief when a patient died. When I was developing hospices 25 years ago I had to let go of that.”

Lamers and other pioneers in the hospice field set traditional thinking on its head. Everything changed. “We found it was beneficial for staff to attend the funeral of a patient that had died,” Lamers said. “We invited survivors in for support, for weeks, often years after the death.”

This caring had an unintended benefit for the patient. “We let patients know that their families will be taken care of and this gives patients an opportunity to talk about their own concerns that they might not have otherwise expressed,” Lamers said. “It gave everyone a new level of relatedness.”

These lessons about ritual and memorializing apply equally to professional and family caregivers. “People need to understand that their loved one is dead, but not gone as in forgotten,” he said.

Facing the Grief
Rhoda Eagan, project leader for the Volunteer Hospice Network, representing approximately 200 all-volunteer hospices in the United States, agrees that attention to the grieving process is critically important to caregivers. The national emphasis on acute medical care takes away from the human interaction. “Nothing goes to the frontlines,” Eagan said.

Lamers often sees the most serious burnout in couples trying to go it alone through the dying process. “It comes from husbands and wives trying to ‘protect’ themselves from strangers,” he said. At a minimum, he recommends some kind of regular “respite care,” in which the primary caregiver gets a break from the physical demands, psychological pressures and business decisions that come with the territory.

“Caregivers need to recognize that it is a job and that putting your own health at risk just won’t work,” Mintz added. Lamers, who began his practice in psychiatry, says that advances in drug-based pain management have allowed caregivers to focus on more quality-of-life issues, especially preparing for the grieving process. ” In my early practice I saw a lot of problems with unresolved grief; now we are dealing more with it at the appropriate time,” he said.

Foster says that a key to surviving caregiving for the terminally ill is facing the inevitability of death early in the process. “We live in the age of ‘if you can do, you should do it’,” she said. “We don’t have the social ethos to support decisions to limit anything.” Lamers concurs that too often, caregivers are struggling not to prolong life, but to extend death.

“You don’t want to hurry death or retard death,” Foster said, ” but we have so many medical tools for doing either.”

New technologies have pushed doctors even further from giving definitive “terminal” diagnoses, a situation that disrupts a patient and caregiver from facing quests beyond the extension of physical life: peacefulness, a sense of completion, spiritual examination.

The challenges of caregiving for the terminally ill can be daunting. The issues are complex and emotionally taxing. But professionals agree that self-care — and societal support — for caregivers is crucial to society as it navigates these uncharted waters. “Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage,” advises the National Family Caregivers Association in its “10 Tips for Family Caregivers.”

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