Caregivers learning to let go at the end

It is a pivotal point for a caregiver: the transition from doing to "being" as a loved one's life is ending.

Denise Brown, who runs the website www.caregiving.com, says this is when a caregiver's job shifts from making appointments, finding new treatments, and fighting decline to accepting that death is sometimes unstoppable.

The idea came to Brown after a reader wrote about caring for her mother, who was in her 90s. The woman had fought her mother's chronic urinary tract infections to the end, at the cost of considerable inconvenience and effort.

"I so wished I would have stopped all that doing . . . and just been with my mom," she wrote.

When I heard Brown speak recently about being at an Alzheimer's Association conference, I knew exactly what she meant. I had cared for my husband as he died of cancer, in hospice at home. I had watched with wonder as an old family friend, a woman with much caregiving experience, simply sat with Jeff. His breathing had grown labored by then and he was pale and shrunken from cancer. She was calm, peaceful, and totally accepting. It was beautiful.

I did it too, of course, but I never quite mustered the same attitude. Two years of frenzied Type A activity and monstrous stress had preceded those last quiet days. It wasn't easy to switch gears. Plus, it was hard to just "be" with the loss of my husband, my children's father.

Like so many things experts say about death and caregiving, just being in the presence of mortality is a lot easier said than done, and deserves more discussion.

Brown gets that. She thinks it's worth it to make the effort to let go. "I really think it's one of the best lessons you can learn in caregiving," she said.

For starters, she and other experts said, caregivers can think differently about the value of being present.

"I think they need to see that that is also active caregiving," said Shari Baron, a Havertown psychotherapist who cared for her father at the end of his life.

Ideally, someone on your loved one's medical team would tell you when it's time to do this, but that doesn't always happen. Doctors worry that patients will feel abandoned, or they sense that patients still want to fight.

Families are left to figure this out. "Most people know in their gut when it's time to let go," Baron said.

Ron King, a chaplain at Holy Redeemer Hospice, encourages caregivers to listen to their own bodies. When they feel more exhausted and realize "the process is getting bigger than me," it is a sign the tide has turned.

Brown, who lives in suburban Chicago, said the turning point is when families realize that there's a difference between a preventable decline and one that is inevitable. "It happens at the moment when the family caregiver understands that death will come and it's not related to how much they do," she said.

There certainly are opportunities to stop and experience the moment all along the "journey" toward death. Holidays, vacations, a cup of coffee on the patio, take on extra poignancy when time is precious. But, as David Casarett, director of hospice and palliative care at Penn Medicine, pointed out, patients get weaker and have more medical problems as the end draws closer. They need more help.

"Dealing with a serious illness is a lot of work," he said. "Some of the most burdened caregivers I see are the caregivers of patients who are very near to the end of life."

Small families, or those that can't afford to hire extra help, are working hard. "The ability to do that sitting, that 'being present'," he said, "is for many people a luxury."

Still, he said, the work slows down dramatically in the last few days, when patients stop eating and drinking and their bodies begin to shut down. At that point, he sees a lot of "awkwardness." The caregiving role may have defined people for years and now they feel lost. "What's my job? What's my role? . . . How do I just be?" they wonder. Sometimes hospice workers have to find tasks for them to do.

Gloria Allon, a nurse who runs Crossroads Hospice in Plymouth Meeting, said even she found it difficult to slow down as she cared for her mother. She made sure that everyone else in the family had time alone with her mother, but didn't do it herself.

"No one said that to me. 'Wait a minute. You are her daughter. Slow down a little. Come off the treadmill,' " she said.

Brown said there is comfort in the "busyness" of caregiving. The quiet of being requires a different kind of strength. As Allon observed, we are confronting our own mortality every time we witness a death. Sitting still allows powerful, frightening emotions to surface.

"If you are comfortable with being uncomfortable . . . it makes it easier," added Karen Mechanic, a psychiatrist at Fox Chase Cancer Center.

Caregivers also want to protect the dying person.

"I would get overcome with emotion and I didn't want her to see that because that would upset her," Gerry Davis, of Plymouth Meeting said. His wife Cyndi was 64 when she died of ovarian cancer last year.

Donald Phimister recalled sitting with his wife, a social worker who had once worked at Wissahickon Hospice, as she was dying of Alzheimer's disease. "When you start to sit, you know, pleasant experiences come back," he said. "You start beginning to think of your life. You take it for granted and then, all of a sudden, for one of you, it stops."

Some people never accept that death is a possibility, even when the diagnosis is dire.

Nate Eustis, whose wife Maria died of lung cancer in 2012 after a "50-month battle," said the couple were seeking new clinical trials almost to the end. He was still conflicted after their doctor said there was nothing left to try.

"It's one of those things where you're thanking God for 39 years that you've been together and you're cursing him for the 20 you've lost and I was kind of in that transition," said Eustis of Norristown.

Jennifer Maroun of Kennett Square said her father, Jack Connolly, who had pancreatic cancer, deflected her attempts to say goodbye. "Get out of here, you brat," he'd say. When he went to Penn Hospice at Rittenhouse, he said he didn't want visitors. "I just want to be left with my own thoughts," he told her and her mother. They came to sit with him anyway - holding his hand and telling him about his grandchildren - but also respected his pride.

Experts recommend talking to the dying loved one, even if you're not sure they can hear. "There is really an opportunity here for everyone to say 'Goodbye, thank you, forgive me, I forgive you,' " said Allon, the Crossroads director. Silence is fine, too.

Here's how Allon does it with patients. "I would go in and I would just sit and I would place my hand under their hand. I'd say, 'I'm just going to sit with you.' Sometimes people would actually cry. We didn't have to say a word. The touching part - that is so powerful."

She admitted she had trouble doing that with her own mother. "Really looking into your loved one's eyes, knowing that they're leaving you, is hard to do," she said.

Gabriel Rocco, a contemplative counselor who uses meditation skills to help people cope with cancer, said his approach is rooted in Buddhism. His goal is to connect with his "essential nature" while sitting quietly. When he visits the dying, he is offering "spacious awareness and warmth to the person I'm sitting with."

He suggests sitting in a comfortable chair and finding a comfortable position to minimize fidgeting. "Give yourself permission to have no goal other than to be present for your loved one," he said. Breathe deeply and focus on your breaths. When emotions arise, acknowledge them, then let them dissolve. Keep breathing.

Set the bar low. "Do your best to be completely present for the other person for a minute, no more than five," Rocco said.

You will often feel tremendous support from the dying person, he said. "When the person gets closer and closer to death, they also become more spacious."

Death itself, though, is a solitary experience. The living have to let go.

It's OK if you can't pull all that off. Everyone grieves at their own pace in their own way. You can say goodbye later, in a different way. You can accept that you did what you needed to do.

But King, the Holy Redeemer chaplain, said that, if we're open, the end of a loved one's life is a time to receive wisdom and to give love in the same wordless, primal way we do when we hold a baby.

"If God ever sends angels to be with us," he said, "it's at times like this, and we might miss it if we're too busy."

215-854-4944

@StaceyABurling

www.inquirer.com/health_science