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The Palliative Caregiver

A Caregiver's Guide to Palliative Care
By Eileen Beal
WebMD Feature
Reviewed by Laura J. Martin, MD

No matter when you get the news that a loved one has a painful or terminal condition, it's a shock.

Deciding to become their caregiver, to help them manage their pain and suffering -- or manage it for them -- is a difficult choice.

That choice may be made in the blink of an eye, particularly when a loved one has a serious injury or dramatic downturn in a chronic condition.

Eunice Czarnecki, 73, had been helping her brother manage his heart disease and diabetes for years. But when he took a sudden turn for the worse, his doctor at Milwaukee's VA Medical Center told him his body simply couldn't fight any more. He was dying.

"He accepted that," Czarnecki tells WebMD. "But, even though he was having trouble breathing and was in a lot of pain, he wanted to die at home."

It wasn't Czarnecki's first time as a caregiver. She'd already seen her husband through his terminal illness.

"I knew I could take care of him as long as I had help with his pain," she says. "It was exhausting but worth it to be with my brother when he died."

When Karen Lowe married her husband, Barry, in 2005, he had already been diagnosed with Parkinson's disease. Soon after the Bartlesville, Okla., couple wed, they sat down with her husband's neurologist and had a heart-to-heart talk about the future. A major part of their discussion was about the end-of-life care her husband would need and want.

"So much talk about end of life is about death, but that's not what we talked about. We talked about quality of life and how to keep things as normal as possible. And we talked about how to make sure he won't suffer and the options we have to prevent that from happening," Lowe tells WebMD.

The option of palliative care

Palliative care is person-centered care with a goal of maximizing a patient's quality of life. To achieve this, the palliative care team attends to physical, emotional, social, and spiritual quality of life -- for the caregiver as well as for the patient.

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