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In the course of one’s role as a caregiver, there are many moments of pain and trauma experienced by the caregiver in witnessing the decline and losses of their loved on.  This is often an area that people tend not to discuss.  The following piece describes how many caregivers suffer from a form of PTSD.

For Some Caregivers, the Trauma Lingers

By JUDITH GRAHAM
Dr. Judy Stone's mother, Maggie, and her daughter, Heather.Courtesy of Dr. Judy Stone Dr. Judy Stone’s mother, Maggie, and her daughter, Heather.

Recently, I spoke at length to a physician who seems to have suffered a form of post-traumatic stress after her mother’s final illness.

There is little research on this topic, which suggests that it is overlooked or discounted. But several experts acknowledge that psychological trauma of this sort does exist.

Barry Jacobs, a clinical psychologist and author of “The Emotional Survival Guide for Caregivers” (The Guilford Press, 2006), often sees caregivers who struggle with intrusive thoughts and memories months and even years after a loved one has died.

“Many people find themselves unable to stop thinking about the suffering they witnessed, which is so powerfully seared into their brains that they cannot push it away,” Dr. Jacobs said.

Flashbacks are a symptom of post-traumatic stress disorder, along with feelings of numbness, anxiety, guilt, dread, depression, irritability, apathy, tension and more. Though one symptom or several do not prove that such a condition exists — that’s up to an expert to determine — these issues are a “very common problem for caregivers,” Dr. Jacobs said.

Dolores Gallagher-Thompson, a professor of psychiatry at the Stanford University School of Medicine who treats many caregivers, said there was little evidence that caregiving on its own caused post-traumatic stress. But if someone is vulnerable for another reason — perhaps a tragedy experienced earlier in life — this kind of response might be activated.

“When something happens that the individual perceives and reacts to as a tremendous stressor, that can intensify and bring back to the forefront of consciousness memories that were traumatic,” Dr. Gallagher-Thompson said. “It’s more an exacerbation of an already existing vulnerability.”

 

Dr. Judy Stone, the physician who was willing to share her mother’s end-of-life experience and her powerful reaction to it, fits that definition in spades.

Both of Dr. Stone’s Hungarian parents were Holocaust survivors: her mother, Magdus, called Maggie by family and friends, had been sent to Auschwitz; her father, Miki, to Dachau. The two married before World War II, after Maggie left her small village, moved to the city and became a corset maker in Miki’s shop.

Death cast a long shadow over the family. During the war, Maggie’s first baby died of exposure while she was confined for a time to the Debrecen ghetto. After the war, the family moved to the United States, where they worked to recover a sense of normalcy and Miki worked as a maker of orthopedic appliances. Then he died suddenly of a heart attack at the age of 50.

“None of us recovered from that,” said Dr. Stone, who traces her interest in medicine and her lifelong interest in fighting for social justice to her parents and trips she made with her father to visit his clients.

Decades passed, as Dr. Stone operated an infectious disease practice in Cumberland, Md., and raised her own family.

In her old age, Maggie, who her daughter describes as “tough, stubborn, strong,” developed macular degeneration, bad arthritis and emphysema — a result of a smoking habit she started just after the war and never gave up. Still, she lived alone, accepting no help until she reached the age of 92.

Then, in late 2007, respiratory failure set in, causing the old woman to be admitted to the hospital, then rehabilitation, then assisted living, then another hospital. Maggie had made her preferences absolutely clear to her daughter, who had medical power of attorney: doctors were to pursue every intervention needed to keep her alive.

Yet one doctor sent her from a rehabilitation center to the hospital during respiratory crisis with instructions that she was not to be resuscitated — despite her express wishes. Fortunately, the hospital called Dr. Stone and the order was reversed.

“You have to be ever vigilant,” Dr. Stone said when asked what advice she would give to families. “You can’t assume that anything, be it a D.N.R. or allergies or medication orders, have been communicated correctly.”

Other mistakes were made in various settings: There were times that Dr. Stone’s mother had not received necessary oxygen, was without an inhaler she needed for respiratory distress, was denied water or ice chips to moisten her mouth, or received an antibiotic that can cause hallucinations in older people, despite Dr. Stone’s request that this not happen. “People didn’t listen,” she said. “The lack of communication was horrible.”

It was a daily fight to protect her mother and make sure she got what she needed, and “frankly, if I hadn’t been a doctor, I think I would have been thrown out of there,” she said.

In the end, when it became clear that death was inevitable, Maggie finally agreed to be taken off a respirator. But rather than immediately arrange for palliative measures, doctors arranged for a brief trial to see if she could breathe on her own.

“They didn’t give her enough morphine to suppress her agony,” Dr. Stone recalled.

Five years have passed since her mother died, and “I still have nightmares about her being tortured,” the doctor said. “I’ve never been able to overcome the feeling that I failed her — I let her down. It wasn’t her dying that is so upsetting, it was how she died and the unnecessary suffering at the end.”

Dr. Stone had specialized in treating infectious diseases and often saw patients who were critically ill in intensive care. But after her mother died, “I just could not do it,” she said. “I couldn’t see people die. I couldn’t step foot in the I.C.U. for a long, long time.”

Today, she works part time seeing patients with infectious diseases on an as-needed basis in various places — a job she calls “rent a doc” — and blogs for Scientific American about medical ethics. “I tilt at windmills,” she said, describing her current occupations.

Most important to her is trying to change problems in the health system that failed her mother and failed her as well. But Dr. Stone has a sense of despair about that: it is too big an issue, too hard to tackle.

I’m grateful to her for sharing her story so that other caregivers who may have experienced overwhelming emotional reactions that feel like post-traumatic stress realize they are not alone.

It is important to note that both Dr. Jacobs and Dr. Gallagher-Thompson report successfully treating caregivers beset by overwhelming stress. It is hard work and it takes time, but they say recovery is possible. I’ll give a sense of treatment options they and others recommend in another post.

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