The Accidental Caregiver: An Interview With Gregor Collins
Posted on Monday, December 2nd, 2013 at 8:49 am by lifemediamatters
When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
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Spirituality at end of life: Practitioners remain hesitant
Posted on Friday, December 28th, 2012 at 5:07 pm by Life Matters Media
Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.
A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.
“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.
Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.
Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.
Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.
Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.
“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.
Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.
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Occupational stress: Doctors may suffer when unable to save lives
Posted on Thursday, November 29th, 2012 at 1:03 pm by Life Matters Media
Physicians who treat the terminally ill may suffer from emotional stress when unable to save patients’ lives. Burnout and compassion fatigue are two serious forms of occupational stress physicians may suffer, according to research by Michael Kearney, M.D.
Kearney, a palliative care physician at Santa Barbara Cottage Hospital in California, describes burnout as “the end stage of stresses between the individual and the work environment.” Compassion fatigue is “secondary post-traumatic stress disorder, or vicarious traumatization — trauma suffered when someone close to you is suffering.”
Health care journalist Jane Brody addresses the stress and anxiety oncologists struggle with in a new article for The New York Times. Brody writes, “A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient’s misery, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying.” Compassion fatigue may lead to burnout.
Up to 60 percent of practicing physicians report symptoms of burnout.
According to Brody: “Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often suffer with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.”
Physician suicide linked to occupational stress
According to Crystal Phend, senior staff writer for MedPage Today, ”Suicide among physicians appears to follow a different profile than in the general population, with a greater role played by job stress and mental health problems.”
Phend cites a study by Katherine J. Gold, M.D., of the University of Michigan in Ann Arbor, who found that problems with work were three times more likely to have contributed to a physician’s suicide than a nonphysician’s. Mental illness was also 34 percent more common before a suicide among physicians.
Up to 60 percent of practicing physicians report symptoms of burnout
“The results of this study paint a picture of the typical physician suicide victim that is substantially different from that of the nonphysician suicide victim in several important ways,” Gold wrote for General Hospital Psychiatry. ”Inadequate treatment and increased problems related to job stress may be potentially modifiable risk factors to reduce suicidal death among physicians.”
Although physicians have more access to health care, they may be reluctant to seek help. ”I think stigma about mental health is a huge part of the story. There is a belief that physicians should be able to avoid depression or just ‘get over it’ by themselves,” Gold wrote.
More than 200 of the 31,636 suicide victims reported in the National Violent Death Reporting System from 2003 to 2008 were physicians.
Meditation may help physicians
A 2008 study published by the Journal of Palliative Medicine, in which researchers studied 18 oncologists, found that physicians who viewed their work with patients as both biomedical and psychosocial found end of life more satisfying than those with a more biomedical perspective.
“Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end of life care, and an ability to positively influence patient and family coping with and acceptance of the dying process,” the researchers concluded.
“In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support.”
Kearney recommends “mindfulness meditation,” a Buddhist-influenced practice for physicians suffering from stress. “The doctor is able to recognize he’s being stressed, and it prevents him from invoking the survival defense mechanisms of fight (‘Let’s do another course of chemotherapy’), flight (‘There’s nothing more I can do for you — I’ll go get the chaplain’) and freeze (the doctor goes blank and does nothing).” He claims that even 8-10 minutes a day of “mindfulness meditation” can help.
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"The Quality of Life": The end of life played out on stage
Posted on Tuesday, November 20th, 2012 at 5:34 pm by Life Matters Media
The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.
Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.
Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.
The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.
Life Matters Media spoke with the cast about their experiences with the play.
Why is discussing the end of life taboo in America?
Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.
Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”
Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.
Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.
How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.
Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.
Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.
Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.
Do you identify with your characters?
Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.
Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.
Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.
The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.
The Chicago Theatre Review’s Rachel Parent has called the play ”a strong note in a beautiful place.”
Tickets are available here.
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Childless baby boomers plan for end of life care
Posted on Sunday, November 18th, 2012 at 2:11 pm by Life Matters Media
As the nation’s large baby boomer population continues to age, some childless seniors are wondering who will take care of them at the end of life. The Sacramento Bee’s Anita Creamer highlights such individuals in a new feature focusing on the struggles childless seniors face in planning for their future.
Creamer spoke with Karen Spencer, 60, who didn’t marry until she was in her late forties. Like more than 20 percent of her generation’s women, she’s one of the 15 million boomers who never had children.
“I have nieces and nephews who would show up, but I don’t want them to feel like it’s necessary to take care of me,” said Spencer who lives in Granite Bay, California with her 68 year-old husband Mike Twigg. “Either I go into assisted living, or I stay in my home with somebody taking care of me. That would be my intention with the long-term care insurance.”
Although she has some savings and a long-term care insurance policy, she worries about the non-monetary situations that could arise, such as the need for home repairs, hospital advocacy and family visits.
“These are issues that we’ll have to grapple with as a country,” said Lynn Feinberg, an AARP policy expert on caregiving. “When somebody needs long-term care, they typically turn to their children.”
There is an increasing reliance on fewer family members to take care of older relatives. ”The expectation on a nephew to care for his elderly aunt as well as his own parents and children presents a real challenge,” said Feinberg.
In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.
Creamer describes this issue as a women’s issue, because two-thirds of the 11 million boomers who’ve already lost their spouses are female. Experts aren’t quite sure what will happen to frail seniors without children on whom to rely.
“Even so, both baby boomers and their elders indulge in a rather startling lack of planning for their care needs in old age,” Creamer writes. A recent Centers for Disease Control study shows that only 37 percent of older adults who aren’t in nursing homes or hospice care – and only 15 percent of all adults – have completed legal proxies to specify who can make decisions on their behalf.
Dr. Larry Weiss, founder of Reno’s Center for Healthy Aging, and Feinberg suggest a “Golden Girls” scenario becoming increasingly popular. Small group of seniors are starting to live together, sharing expenses and caring for one another.
Last year, The New York Times’ Paula Span wrote about childless seniors and their quality of life. She interviewed Dr. Merril Silverstein, a gerontologist at the University of Southern California, who found that people at least 75 years old with trouble walking across a room weren’t receiving less care than those who were parents. They also didn’t score lower on measures of psychological well-being.
“The popular idea was that without children, you’d be in a whole heap of trouble,” Dr. Silverstein said. “But there’s not a whole lot of empirical evidence showing that.”
Seniors can stay in their homes
Henry Cisneros and Jane Hickie, of the Stanford Center on Longevity, offer some advice on how seniors could stay in their homes if necessary changes happen within them.
American housing design standards have undergone few changes since 1964, Hickie said last month at the Northwestern University Buehler Center on Aging. Home construction then was based on measurements of able-bodied men who were in military service during World War II. “The problem is that these design standards don’t fit a population that is shorter, less flexible, fatter, has less muscle mass and is just not as strong as younger people who were the basis for those standards.”
Contrasting colored lining on steps and furniture, better lighting and guide lights can help seniors continue to live in their own homes.
Spencer likes the idea of staying in her home and being surrounded by friends. Spencer and a life-long friend talk about staying in the same neighborhood and eventually traveling together.
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