The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
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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Family caregivers are the glue between patients, physicians and medical facilities, said geriatrics expert Dr. Cheryl Woodson during “Caregiving in America,” a conference presented in downtown Chicago this week by Washington Post Live.
“In the new health care paradigm, the caregivers have to be the glue, because the communication systems are not there yet. When you transfer from one facility to another, it is the caregiver who has to be the institutional memory,” Woodson said. “There are specific questions to ask and ways to organize that information.”
Robyn Golden, director of health and aging at Rush University Medical Center, said she is continually “shocked” by how often she meets caregivers who do not identify themselves as such. “The place to catch the invisible caregiver is either in the church basement or in the health system, because many caregivers don’t say, ‘I’m a caregiver.’ So it’s really important we create a safety net to find them,” she said. Caregivers, Golden suggested, need to be asked about how they are feeling and about their overall health.
Golden said it is especially difficult for medical providers to engage with family caregivers as equal partners, partly because physicians and nurses are often overwhelmed with patients and unaccustomed to dealing with caregivers. The result is that caregivers can feel unwanted or invisible to medical providers, and they often miss out on their loved one’s discharge orders or changes in treatments.
According to findings published by AARP’s Public Policy Institute, almost half of family caregivers performed medical or nursing tasks for their recipients facing multiple chronic physical and cognitive conditions in 2012. Nearly 80 percent of family caregivers who provided medical or nursing tasks were also managing medications, including administering intravenous fluids and injections. ”We are asking caregivers to do things that an RN would be nervous to do on their own,” Golden said.
The answer to the caregiver crisis, Golden added, is taking time to teach caregivers their tasks and determine if they even have the capacity to care, as many caregivers still work full-time jobs or are raising young children.
Woodson maintains that a greater safety net of home services and support for caregivers, including assistance for things like placing catheters or preparing infusions for antibiotics, is desperately needed.
When asked what advice she would give to adult children caring for their parents or grandparents, Golden told Life Matters Media: “They should know what they can do and what they can’t do, and then work through any guilt they may have. They should also take advantage of caregiver resources and area agencies on aging.” Golden said many caregivers live like a “club sandwich,” caring for their children, parents and even grandparents simultaneously.
But the best thing for families, Golden said, may be early conversations about aging and end of life preferences. “There is a lot of denial, none of us want to think about getting older. People don’t discuss these issues until a crisis,” she said. “But the media can help change that.”
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I Am Breathing, a new documentary chronicling the decline of Neil Platt- a 30-something British man who suffered from Lou Gehrig’s disease- also highlights the importance of spousal caregiving. Throughout the film, his wife, Louise Oswald, sacrifices her time and energy to help him to eat, move and even sleep- while caring for their two year-old son, Oscar. Oswald answered some of our questions in an interview with Life Matters Media.
Louise, you were an excellent caregiver throughout the documentary. What advice do you have for spouses caring for seriously ill patients?
I could answer this question all day, but my most important piece of advice is probably the most obvious: don’t wait too long to ask for help. If you’ve not been in this situation, it may sound like an obvious thing. But I think most people want to cope on their own as long as possible before letting help in. Neil and I managed on our own to the point that I was on my knees with exhaustion, and it was mainly because we wanted to hold on to our privacy as long as possible, our little family unit of three. We wanted to be just like any other new parents. At some point though, you have to realize that as a carer- you need to start to make decisions for the family that will make life easier. It’s very easy to put the immediate needs of your spouse first, and this can undermine your ability to cope with the situation as a whole. You need to be organized. I hate to describe it this way, but as a spouse you are responsible for the ‘management’ of your partner’s care, and it’s a tough job that can spiral into chaos if you don’t ask for help. Help gives you the space to hold on to being a partner, rather than just becoming a carer.
Most people around you won’t know how to help in this situation, and it can be confused as reticence. But in actual fact, they are probably waiting for you to ask.
It is you who needs to tell them now. Think of their strengths. For example, do they enjoy cooking? Are they good with music? If so, could they help you plan meals or bring cooked food? Can they source soothing music to help your partner sleep? Are they good with accounts, and can they help you manage your bills,
compare insurance quotes or just do a little of your paperwork for you? Nothing is too small if it’s going to clear you some valuable time, and people like to be asked for specific help.
Secondly, try to keep self-pity from your thoughts. I found it an incredibly destructive emotion when I let it creep in. Try not to look around you and ask why you got this life- while others got what appears to be normal. I think if you can remember that there really is no ‘normal,’ then it helps keep self-pity away. Also, there will be a lot of well-intended influence and opinions from all directions, quite often delivered with heightened emotion. Try to keep as true to yourself and partner as possible. Be as confident as you can be in making decisions.
Lastly, if you feel like crying, then cry. If you feel like laughing, then laugh. Do what you feel, not what you’re taught.
Have you been surprised by the positive reactions to your story? What do you hope audiences learn from it?
I’m indebted to Emma and Morag for portraying our story in such a beautiful way that it has created an audience for such a difficult subject. I know it’s not a subject that most people are willing to face. It’s incredibly difficult to raise awareness of this disease- as there are no survivor stories, no hope to aim for. So initially,
I’m surprised and touched that people have taken the time out of their own lives to watch the film. I’m pleased when the film is described as ‘life affirming.’ It’s lovely to know that the audience is taking something positive from our story.
Ultimately, I want to raise awareness of ALS. Neil knew that awareness was the first step to better research funding. Even though this disease is rare, the subject of the film is common to us all: life. I think the fear of death often makes us look away, but if the film can help people to have a ‘fly on the wall’ glimpse, to realize that we can adapt and cope in the most devastating of circumstances, I would hope that this helps diminish a little of that fear for the audience and provide a better insight into how to help and support friends or family in difficult situations.
I Am Breathing will be making its theatrical debut in New York City and L.A. in mid-September.
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Frontline in collaboration with the non-profit ProPublica uncovered troubling trends while investigating the multi-billion dollar assisted-living industry, an industry of some 30,000 facilities and nearly a million customers.
“First off, a lot of these facilities are great,” A.C. Thompson, the program’s co-producer, co-writer and host told PBS’ Newshour. “But what we also found was that there was a pattern of problems that spanned the country. And what we kept seeing were allegations and citations for a lack of staffing, not enough workers, a lack of training, workers who weren’t trained enough, medication errors, people getting the wrong drugs over and over again.”
Those suffering from mental illnesses such as dementia or Alzheimer’s disease often fare the worst. The program highlights Emeritus, the nation’s largest assisted-living chain, interviewing some former employees. Sometimes individuals too sick for assisted-living were taken in, and sometimes staffing was too short. Thompson has likened the industry to a “secret world.”
Contributing to the problem on the macro-level are inconsistent regulations across all 50 states– licensing and regulation of assisted-living facilities happen at the state level. And the assisted-living industry shows no signs of slowing down. Experts expect a substantial increase in residents through 2030, as millions of baby boomers age and approach retirement.
Life and Death in Assisted Living, which premiered July 30, has already garnered praise from journalists. ”If you’re considering moving your parent into an assisted- living facility or your mom or dad is one of the roughly 750,000 Americans already living in one, I implore you to watch,” writes Forbes‘ Richard Eisenberg.
According to Paula Span, a senior-care reporter for The New York Times, ”the film delves into several worst-case examples, making full use of the dramatic power of visual media.”
Why focus on Emeritus? “Big, sophisticated national chains have the tools to provide the highest quality care, the acumen and the infrastructure to minimize these tragic incidents — that’s one reason we focused on Emeritus,” Thompson told Eisenberg.
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The U.S. is running out of time to remedy its long-term health care crisis, Dr. Bruce Chernof, chairman of the Federal Commission on Long-term Care, told Chicago’s NPR affiliate. As long-term care insurance dries up and becomes more expensive, millions of baby boomers must begin planning now for uncertain futures.
“It’s important to recognize that we are going to age differently than our grandparents did,” Chernof said, “because 70 percent of folks over the age of 65 will need, on average, about three years of long-term services and support.” Twenty percent will need five years or more. Planning is vital because federal benefits will most likely be scarce; such care is not covered through standard health insurance and is not a prominent portion of Medicare or Medicaid.
But while planning for long-term care is essential, the few available options are expensive. Current long-term care insurance has a price, dependent on when one buys it, one’s medical history and how much care one wants. “We have products that aren’t available to the majority of people who might want them, and we have challenges getting people to understand and to make a choice to plan,” Chernof said.
Even though long-term care insurance has been available for more than 20 years, the industry has faced challenges from conservative investments and historically low interest rates, contributing to higher premiums. “I don’t think anybody would have predicted this if we had this discussion in 2006,” Chernof said. Reuters reports that policyholders have faced double-digit rate hikes. Policy prices are about 20 percent higher this year than in 2012, according to the American Association for Long-term Care Insurance.
Adults should be aiming for long-term care insurance by age 40, he said, since premiums are likely to become much more expensive. Nationally, Chernof suggests building the private long-term care insurance market.
While the biological clock ticks, so does the time Chernof’s commission has to come up with solutions to fix long-term care: 80 days. The commission came about as a result of the January deal that averted the controversial “fiscal cliff,” a combination of tax hikes and spending cuts. The commission is composed of only 15 members (9 Democrats and 6 Republicans) with fundamental differences in opinion.
The commission first convened in late June and is operating with severe limitations– they can only meet during the next four months, there is no permanent staff and the commission will be disbanded after final recommendations are sent to Congress. Congress has no obligation to consider any of the commission’s recommendations.
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Daniel Gaitan serves as a content producer...More