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.
Life Matters Media was given permission to share an excerpt from Carrie Jackson’s essay set to appear in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Jackson’s father died from Alzheimer’s disease in 2012, after nearly three years in hospice care. Jackson serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and on the Junior Board of the Alzheimer’s Association. Her essay recounts an afternoon visit to her father in his nursing home.
The Hand that Feeds
By Carrie Jackson
Music is one of my best ways to communicate with him so I start singing to him about Daisy and the bicycle built for two. My pitch and tone are way off, but I don’t care. It’s one of our favorite songs, and after a minute his eyes open. I ask him if he’s ever ridden a bicycle built for two. He says no, and I remind him how he used to put our dog Rusty in the grocery basket of his old bike and give him rides around Evanston. Finally, I get a smile. Then the moaning starts again.
I ask where it hurts: this time, it’s his shoulders. Jeff says he’s already had his pain medicine and we’re waiting for it to kick in. I ask Jeff if the hospice volunteer came today. He says yes; Dad says no. I believe Jeff. I put on some music. Ellington. We’ve changed the words a bit.
In our version, it’s “If you want to get from Sugar Hill to Harlem, you better take the A train.” We sit. His hands are soft. Softer than mine. His arms are splotched with purple and red marks. I take note of a few new bruises and cuts.
It’s dinnertime, and lately Dad has been taking his meals in his room. Jeff brings in some soup. Tomato barley. I stir it, taste it, and scald my tongue. After a few minutes it’s ready and I ask Dad to open his mouth. He does, takes a bite of soup and makes a horrible face but it stays mostly in his mouth. He chews for almost a minute and I wonder how that’s possible. I don’t see him swallow, but the chewing stops. I try with another spoonful, and another. Four more bites and he’s had enough. The bib is covered with spills. I wipe his mouth and nose. I haven’t seen him eat this much in months. Jeff brings in his plate.
Chicken and mashed potatoes. I know Jeff usually ends up feeding him Ensure, yogurt, and dessert—that seems to be all Dad will take these days. But I’m here, so we try for solid food and whole nutrition. And he eats. It surprises even me, but his eyes are closed and he’s reluctantly accepting every bite I bring to his mouth. Chew, chew, drool, chew, spit, moan, chew, swallow.
With each bite I feed him, I am reminded of what his doctors and the hospice team keep saying—as long as he has nutrition and is able to take food, he could survive for quite some time. And I think of the pain he is in. And I think of the loneliness in his eyes when I’m not there. And I wonder if what I’m doing is helping or hurting. He is chewing, swallowing, digesting. He is surviving. But is that what he wants? Is it worth it?”
Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias will be released April 22, 2014.
There are at least 1.5 million lesbian, gay, bisexual and transgender seniors in the U.S., a population expected to more than double by 2030, according to recent findings by the Department of Health and Human Services. As the 65 and older population grows, many LGBT seniors will face discrimination based on their age and sexual orientation.
In an effort to better understand this population, in 2010 the Administration on Aging provided funding to SAGE (Services and Advocacy for GLBT Elders) to create the National Resource Center on LGBT Aging (NRC). It is the nation’s first national technical assistance resource center focused on the health and social disparities of LGBT seniors.
“One of the biggest issues is that LGBT older adults do not feel comfortable or safe in certain environments,” said Christina DaCosta, online media manager for SAGE. “We at SAGE and the NRC are working to create a shift in attitude via our training efforts, local and national advocacy.” A network of SAGE affiliates has been created across the country to serve LGBT seniors at the state and local level.
According to a 2010 report co-authored by SAGE and the Movement Advancement Project (MAP), LGBT seniors may face an array of unique barriers and inequalities standing in the way of a healthy and rewarding later life. The report identified three major challenges: the effects of social stigma and prejudice; a strong reliance on informal “families of choice” for social connections and care; and unequal treatment under laws, programs and services.
Historical and current prejudice against today’s LGBT seniors has “disrupted their lives, their connections to their families of origin, their chance to have and raise children, and their opportunities to earn a living and save for retirement,” according to Improving The Lives of LGBT Older Adults. Many still remember their sexual orientation being labeled as a “psychiatric disorder” or “immoral.” And nearly one-third of gay and lesbian baby boomers identify discrimination from caregivers and health service providers as their greatest concern about aging.
About 80 percent of long-term care provided to U.S. seniors is provided by family members, but LGBT seniors are half as likely as heterosexual seniors to have close relatives they can call for help– many are estranged from their biological families. They are also about twice as likely to be single, and about three times more likely to be childless. Therefore, many have come to rely on a close network of friends and community members, despite the many laws and institutional regulations that prioritize biological, legal and traditional families; in many instances, such regulations deny resources and support to same-sex partners, “families of choice” and other caregivers.
“Even as our country moves closer to insisting on fair treatment and full opportunity for all of our people, the effects of long-standing discrimination against the LGBT community remind us of how far we still have to go,” wrote AARP Chief Operating Officer Tom Nelson.
A similar 2011 study published by the University of Washington’s School of Social Work also determined LGBT seniors are more likely to face loneliness and distress than others. Researchers surveyed about 2,500 LGBT adults ages 50 to 95 from across the U.S.
“The higher rates of aging and health disparities among lesbian, gay, bisexual and transgender older adults is a major concern for public health,” lead author Karen Fredriksen-Goldsen told a health newswire. “The health disparities reflect the historical and social context of their lives, and the serious adversity they have encountered can jeopardize their health and willingness to seek services in old age.” More than 20 percent of respondents did not disclose their sexual or gender identity to their primary care physician.
“The LGBT community has stepped up in the past to address coming out, AIDS, and civil rights. The next wave has to be aging,” said a 63-year-old man who participated in the study.
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.
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.”
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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- Soup For The Soul: Living With Alzheimer’s
- Nurse Prosecuted For Murder After Allegedly Pulling Life Support
- Older LGBT Hispanics Face Discrimination, Loneliness: Part Two In Series
- Canada: A National Dialogue About End Of Life Care
- Loneliness Can Be Deadly For Seniors
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Daniel Gaitan serves as a content producer...More