Sharyn Hoffman Fein is the President and founder of Ed-U-CARE™ Dallas, a Texas-based non-profit organization dedicated to compassion fatigue awareness and cultural humility training for personal and professional caregivers. She formed Ed-U-Care after years of work in the field of non-medical caregiving, as well as through her own experience caring for her mother, who has Alzheimer’s disease. Sharyn’s unique perspective has given her an inside understanding of the needs of many of society’s most marginalized members, as well as the caregivers who take care of them.
In a recent conversation, Sharyn talked with us more deeply about her work, and the ins and outs of compassion fatigue.
LifeCycles – Sharyn, tell us more about the history and purpose of Ed-U-CARE™ Dallas.
Sharyn Hoffman Fein – Ed-U-CARE was developed based on a need that I discovered while I was working for a company that offered non-medical/direct care services to people aging in our community here in Dallas. There were things that I noticed about myself as a caregiver to the working community and professionally to my own mother who has Alzheimer’s disease – there was something wrong with me that I actually couldn’t put my finger on. I really couldn’t pinpoint it. I wasn’t depressed, I wasn’t really sick, but there was a malaise of some sort that just continued to grow and I really couldn’t understand it…
After many encounters in the non-medical home care industry working directly with clients and their care, I noticed one specific community in our city that was severely marginalized by care professionals in education and training, and that was the older LGBTQ community. Ed-U-CARE was basically founded on a need to bring education and training to caregivers about how to sustain and manage themselves as well as learn what it means to be culturally competent for groups that have been marginalized by society. This kind of education and training is missing in our culture, not only here in the state of Texas but on a national, even international level. We are an education and training wheelhouse for marginalized communities that live in the periphery of humanity – people who just don’t take a lot of care for themselves and really just care exclusively for others.
LC – What is compassion fatigue? Who gets it? Can you give us a deeper understanding?
SHF – You know, everybody has compassion fatigue. It’s a general state of condition for most people who care, whether they’re caring for their pets or caring for their children, or caring for their neighbors, friends, community, or their aging parents, or they’re a sandwich generation caring for their aging parents and children [at the same time]. It’s not an illness; it’s something that we live with that we don’t necessarily understand.
I want to quote Dr. Charles Figley, founder of the Green Cross Academy of Traumatology, who really was the spirit behind understanding what was going on with me personally, but also in the community in which I work… He started doing work with trauma in the 70’s, studied traumatized people, realized in the late 80’s that people were leaving the field and could no longer deal with what they were doing, and it wasn’t burnout. Burnout is the lack of satisfaction with your job that’s too stressful and not enough pay, but what he was talking about is the toxicity of work, the way work can just make you feel terrible, so he defined compassion fatigue, and I’m quoting him, “It’s a state experienced by those helping people in distress. It is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it is traumatizing for the helper, and that is classically called secondary PTSD.”
Certain people can recognize it, and other people, like the people that I invite to the Compassion Fatigue Symposium that Ed-U-CARE hosts, are people that really don’t have an understanding of what it is until they attend this event, and once they attend, then they’re repeat attenders. They come every year because it’s so easy to get lost again and again in caring too much for others at a loss of self. Learning to exercise self-compassionate care without guilt is one of the key thrusts of our programming
LC – I know you have a yearly symposium, and then other smaller events and activities, can you tell us some more?
SHF – Many different communities of caregiving come to our symposium. It’s open to the general public, so that would be the personal and the professional community which consists of social workers, nurses, care managers, clergy, first responders, people in the animal/veterinary world, whether physicians or volunteers, shelter workers, firefighters – just about every professional that is in touch with caring for the life or welfare of another. Once the large event is over, then there is the opportunity for them to contact Ed-U-CARE, and we go in and we sit and listen to what their needs are, and we fill in the holes with very specific training that’s appropriate to their caregivers.
We educate and train caregivers about how to take care of themselves and how to take care of others. We’ve done this for retirement communities and other living facilities, the police department, animal professionals – we work at different levels depending on their unique needs. We address not only the compassion fatigue of the employees, but the compassion fatigue of the business, working from administrative levels down to direct care.
We put together specialized programs done at a PhD and nursing level. For example, veterans of war who have dementia and PTSD go back to the war and get stuck – they have triggers, so we do trigger training for caregivers and family members. We’re unique. We’re the only company in our city doing what we’re doing.
LC – What do you see about the role of compassion fatigue in the workplace?
SHF – Large corporations like Texas Instruments, Microsoft and southwest Airlines – we have a lot of hubs here in Dallas – a lot of these companies are now incorporating plans within the work environment to stop, breathe and think, take a minute and chill out. Some bring in activities like meditation, tai chi, chi gong or sound healing… The businesses are now aware that if they want to save their larger professionals, their administrators, their CEO’s, their CFO’s, if they really want to keep those people working while they’re sandwiched between their families and their children, they have to offer opportunities to be able to leave to care for family members that are aging, and to provide outlets for them.
There is an interest, because people are underperforming due to caregiver exhaustion or because they just feel blaah. Giving it the name, compassion fatigue, is so empowering. If you walk into one of our events, and we have 450 people attend, people walk in like broken flowers and leave like blossomed daisies. Once you take a hold of it and you say, yes I agree, this is me, then at that point you have no excuse not to do something about it, or you’ll just continue to be unhappy. Some people actually commit suicide living with compassion fatigue. We must avoid getting this out of control and change how we care for ourselves, so we can continue to care for others healthfully.
LC – It’s true, self-care is hard to attend to…
SHF – One significant modality for healing is meditation. The term resonates differently with everyone. Some people shy away from it, because they think it’s either too woo-woo or too difficult to learn. Meditation can just mean steady breathing, finding a sentence that makes you happy and saying it to yourself over and over again, or turning on some music and just listening for a minute – change your direction, change your mind. You know, we do this with children when they’re acting out or having bad behavior – we need to do this for ourselves when we’re stuck. There’s even a free app on your telephone that can be downloaded from iTunes called “Stop, Think and Breathe.” It takes 5 minutes.
At the symposium, when we finish the academic portion, we break for lunch, share our stories with others, and move into afternoon breakout sessions, where we discover healing modalities, from nutrition to drumming. We encourage people to reach out far beyond what they think works in their scheme. Most people have no idea what’s out there to calm your body, calm your mind and calm your heart. We certainly support medication when necessary and important, but we encourage our attendees to learn about options to self-heal without over medicating with prescription drugs and alcohol. We like to teach the possibilities of Eastern and Western philosophies blending for a total healing package.
LC – Are there other people in the country doing this type of work?
SHF – There are lots of professionals on compassion fatigue, all over the country. These are the people we bring in to do our speaking. We look for people who rise above and give beyond, people with a unique experience to connect with the community.
Building partnerships with other communities across the country is our goal. The symposium is mobile and can move. It’s taken me five years, but two hospitals are interested in future sponsorships for this event, and that’s the level we need to get to…
LC – What other developments are you seeing?
SHF – I look at companies here in Texas such as Texas Instruments – they have ethics built inside their business practices. They were one of the first companies to have equality in insurance practices for partners. They seem to care deeply about their people by giving something to families with caregiver issues. So, it’s out there, it’s actually happening.
Here at Ed-U-CARE, we do things that set us apart as a training company, by being kind. For example, one of the most critical things I’ve learned is the importance of thanking caregivers. It’s a small compensation for what they do for us and our loved ones, however you’d be surprised by how much these words of gratitude mean to them.
In small ways, Ed-U-CARE makes significant statements to a lot of different people. This has changed my life, and I look forward to the continued opportunity to change the lives of others.
The New Wisdom on Caregiving and Aging – An Interview With Paula Span
Here at LifeCycles, we’ve been talking to increasing numbers of people in their middle years dealing with the challenges of aging parents. We realize there is a need to offer additional information and support to members of this growing community. Join us as we launch our interview series, The New Wisdom on Caregiving and Aging.
When we decided to gather insights from the pioneers in this growing cultural frontier, the first person who came to mind was veteran journalist, Paula Span. Author of the 2009 book, “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions,” she currently writes about aging and caregiving for the New York Times New Old Age blog. A former Washington Post staff writer, Paula now prepares the next generation of journalists at the Columbia University Graduate School of Journalism, where she has taught since 1999.
We’re pleased to share with you our conversation with writer, Paula Span.
* * * * *
LifeCycles: Given the extensive research and variety of topics covered in The New Old Age Blog, I’m interested in your perspective on our culture as a whole. What can we do as American baby boomers to encourage more dialogue around the elderly/aging population in our country?
Paula Span: Today’s situation reminds me of what happened 40-plus years ago, when women were flooding into the workplace and confronted the issue of child care. It became clear – not that we’ve solved that problem, either – that forcing every individual American household, in every suburban house or city apartment or rural community, to grapple independently with how to combine employment and parenting was unfair and unworkable.
We’re at that point with eldercare, I think. Our seniors are living longer, which can be a marvelous thing, a happy result of improved medical care. But most of them – two-thirds – will at some point in their lives need help with the so-called activities of daily living, like bathing and dressing. Most of them will develop chronic diseases, not the kind that carry you off swiftly but the kind that need managing over years and that can bring disability. Caring for them is far more complex, expensive and open-ended than eldercare was for our parents and grandparents.
This is a common predicament, a question tens of millions of families are dealing with. And it requires common solutions. Simply to begin talking about this, rather than shrugging it off as a purely private family matter, is important. Families do still care for their elders, as they always have, and most of them want to take on that role. But we shouldn’t ask them to shoulder it alone.
LC: It seems that there are many places around the world that are doing a better job of taking care of their elderly than we are here in the US. What can we learn from these other cultures?
PS: Actually, I think many countries are in the same boat, because a big part of what’s bringing these issues to the foreground is demographic change – aging populations. Lots of countries are trying to figure out how to respond.
Look at China. There’s a culture that supposedly includes reverence for the aged and has a strong tradition of families caring for their parents. But China is industrializing, which means workers leaving their home villages and regions and heading for the cities where the jobs are. It also means more women in the workforce. So private developers are building nursing homes in major Chinese cities at a rapid clip, Brown University researchers have been reporting. Sound familiar? It’s happening later there than it happened here, but the switch from an agrarian to an industrial society, the accompanying geographic mobility, the influx of women into the workforce are causing similar dilemmas.
And I don’t decry those changes, by the way. I want the freedom to be a working woman. I want to be able to move from my hometown if I decide to. We’re never going to turn back the clock. We’re not the Waltons. (Obligatory boomer pop culture reference.)
So we need to figure out how to accommodate the needs of our elders – not just their care if they’re ill or frail, but their need for vital, vibrant lives that last years longer than they used to – and still be able to work and live and raise our own families.
This is a global issue, not just an American one.
LC: You’ve written about a generation gap between how we as adult children see our parents as they decline, and how they perceive themselves. Often, they look at other older people and think, “Compared to them, I’m doing pretty well.” At the same time we just see our parents as getting older, more feeble and less able to care for themselves. What can we do as a society to mitigate that disconnect or that generation gap?
PS: It was a hypothesis of mine, not something I can really document. But the single most common and frustrating question that arises in comments on the New Old Age blog, or when I speak to caregiver groups, is this matter of trying to get parents to accept help. That also means their coming to accept their limitations. It’s enormously difficult in many families (but, blessedly, not my own).
Adult children complain that their parents won’t stop driving, even if their diminished skills seem to endanger them and others on the road. That they won’t accept even minimal paid assistance at home, like a housekeeper or an aide to help with bathing and meals. That they won’t accept help with managing finances. That they won’t spring for hearing aids.
It’s hard to know how much of this resistance is economic, a case of Depression-era reluctance to spend money for fear of not having enough, and how much is denial of the less pleasant effects of aging or of failing health (which are not synonymous). In some cases, dementia – recognized or not — is clouding the older people’s judgment.
And in some cases, of course, adult children may actually be misjudging the situation or over-stepping their bounds. It’s common to hear them refer to “role reversal,” in which the parents become the children and vice versa – but it’s a poor analogy. Parents are not children, and unless we’re talking about significant dementia they can make their own decisions, even if they’re not the decisions their children wish they would make.
But a study of patients with heart failure, and the way older versus younger people react to their diagnoses, made me think about the ways parents and adult children may simply see the same set of facts through different lenses. The parents, the study found, weren’t comparing their current conditions to their more-vital pasts. They were looking at other seniors who were in worse shape and saying, “This isn’t so bad.”
I wish I knew how to narrow those differences. Some families have literally called in a mediator. Many geriatric care managers are also licensed clinical social workers and can help people get beyond conflict and reach consensus.
LC: There is a very real division of labor in the US when it comes to caring for our aging family. Women are the primary caregivers. This has a profound effect on our progress in the workplace, our advancing careers and our ability to shatter the glass ceiling. What kind of policies should we be encouraging our elected officials to write and enact that will cause a realignment of this imbalance? And if we cannot realign, what can our representatives do to support the female caregiver?
PS: It also has an effect on women’s own economic security when they are elderly themselves. About two-thirds of caregivers are women. If they cut back their hours, shift from full-time to part-time work, turn down promotions or leave the workforce altogether to care for their relatives – and research shows that they do, in fact, use all those strategies – then they may have lower pension and Social Security benefits for the rest of their lives. They may not be able to save enough for their own retirement.
Employers need to recognize that both men and women become caregivers for the elderly, that they need the same kind of flexible hours, job-sharing programs, part-time benefits and family leaves as people with young children. Both federal and state legislators need to address this. I’d also love to see workplaces open onsite day programs for older adults, just as a few have child care centers.
Family caregivers actually save government a great deal of money by keeping elderly loved ones at home, which is where they overwhelmingly prefer to be. Every year that an older person stays at home or in assisted living, delaying entry into an expensive nursing home where Medicaid eventually picks up most of the cost, reduces government expense. The least the government could do in return is make it simpler to have a job and be a caregiver.
LC: How can we retrain, re-educate our young people and our society to look at growing older with a different vision? How can our education system help us bring a new way to look at growing older and caring for elderly people?
PS: I wish I had a good answer. One factor that may help reduce the age segregation of our society is that this is where a lot of future jobs are going to be, in health care and services for older adults. Young people might overcome their ageism more rapidly if they know that’s where the work is.
Another source of change may be simple longevity. The longer life spans of today’s elders mean that they are more likely to have relationships with their adult grandchildren. If the grandparent who read you stories when you were five is still around when you turn 25, you may develop a different perspective on aging.
LC: One topic I have not seen as much focus on is the special circumstances that gay/lesbian older Americans contend with when they need help. From your perspective, what is the status of the discussion about the gay community’s elder population and the special needs they might have?
PS: I am hearing and reading more about this, as the activists who were on the front lines of the gay liberation movement, the organizers who mobilized against AIDS, the people who came out 40 years ago are now aging and need help.
LGBT older adults express uneasiness about turning for help to facilities and programs that assume their clients and patients are heterosexual. They’re worried that they’ll be vulnerable to homophobic staff members. They’re concerned about cultural isolation. They’re unsure their health needs will be met. I’ve heard about older people re-closeting themselves, not being open about their orientation in assisted living facilities or nursing homes, out of fear. Plus, they’re less likely to have children to help oversee their care.
One response has been to try to develop senior communities specifically meant for the LGBT community. An affordable housing complex opened in Philadelphia just recently, for instance. The financial crisis shut down funding for new developments for a while, but perhaps as lending loosens and the economy improves, that will change.
But it’s also necessary to educate staffs and administrators in every kind of senior program and facility about the particular needs and values of gay and lesbian patients and clients. The price of receiving care cannot be hiding who you are.
* * * * *
You can read Paula’s regular columns at the New York Times New Old Age blog.
Her website is www.paulaspan.com. You can also visit her on Twitter or Facebook.
LifeCycles is devoted to helping families manage the myriad of practical issues and concerns that arise when aging loved ones begin to experience significant changes in their health status. When it comes to navigating major life transitions, nothing can strike fear into the heart of families more than discussions about death. Many people avoid this important topic altogether, to the point where they end up in regrettable situations.
One person who is making great strides nationally in helping families lighten the burden around end-of-life planning is Pulitzer Prize winning journalist and author, Ellen Goodman, co-founder of The Conversation Project. Launched in collaboration with the Institute for Healthcare Improvement (IHI), the Conversation Project is a public engagement campaign with the goal of having every person’s wishes for end-of-life care expressed and respected.
Much like LifeCycles founder Lisa Horowitz, Goodman’s interest in this area was heavily influenced by her own personal experience. In Ellen’s case, she was left with doubts as to whether or not she had acted according to the wishes of her mother, whose dementia had left her unable to communicate effectively prior to her death. For Lisa, her professional expertise around advance care planning was heightened by her firsthand experience with three family members before, during and after their deaths.
We recently had our own conversation with Ellen Goodman that covered a number of topics relevant to advanced care planning and caregiving, ranging from the disproportionate impact of caregiving on women in our society to the need to bring humor and joy into the conversation about death.
First let’s have a look at the October, 2015 announcement by The Center for Medicare/Medicaid Services (CMS) that it would begin reimbursing health care providers for having discussions with their patients about their options for end-of-life care, aka, advance care planning. You may remember the highly politicized hype about “death panels” during the last presidential election that put an inaccurate spin on conversations that people would be having with their providers about their wishes for treatment. It planted an unrealistic fear in people’s minds that they would be forced into certain decisions against their will. This could not have been further from the truth. The current ruling encourages people to exercise their own choices after reviewing all available options with medical professionals.
LifeCycles – Tell us the significance of the new directive that has effectively put “death to the death panels,” now supporting the extension of conversations that have been taking place among families to health care providers.
Ellen Goodman – I think it’s a very powerful moment of change when CMS has decided to reimburse doctors for talking to their patients about end of life wishes. What’s particularly powerful about it is that they aren’t just talking to people who are terminally ill or people who are ill at all, or even people who are just over 65, since Medicare covers people who are not just senior citizens. It’s particularly powerful that it’s covering people who are not sick at all, because our whole goal is to say that, you know it’s always too soon to have these conversations until it’s too late. And you don’t know when the moment will come. So we believe that people should have these conversations at the kitchen table with the people that they love, and then have these conversations with their doctors. We think this will both encourage people to have these conversations with their families, and ensure that the wishes that they express there will be respected by the healthcare system when there is a crisis.
LC – So when people do make their wishes known, and they do complete the paperwork and they have a healthcare proxy, what do families need to understand about the kind of diligence that’s required to make sure that those orders are carried out?
EG – Well the first thing that families need to do is to feel comfortable really talking about what matters to people at the end of life. The Conversation Starter Kit is not just about tubes and respirators, it’s about how you want to live at the end of life and about what matters to you. For example, 70% of people say that they’d like to die at home, and 70% of people die in hospitals and institutions. So we encourage people to use our Conversation Starter Kit to discuss values and really what matters, and also to get everybody in the family on the same page. Because one of the worst things that can happen is that your kids would get into a conflict over what your wishes are… One of the fairly startling statistics is that about half of the people over 65 who end up in the hospital can’t make decisions for themselves.
LC – That’s frightening.
EG – So we need to have identified somebody we trust and have talked with … those people are the decision makers for us. And they are then empowered to have this conversation with the healthcare system if that’s necessary. So for example, if you need surgery, it is your health care decision maker who will decide. If you’ve said to that person, you know what, I know at this point in my life, if something goes wrong I don’t want to be operated on, then that person is empowered to make sure that the healthcare system respects your wishes. Hopefully, you’ve also spelled out what you wanted in an advance directive. But to be honest, there’s no checklist on earth, no medical checklist on earth that’s long enough and that can cover every conceivable medical contingency…
LC – Of course.
EG – … so the most important thing really is to have somebody who knows you and who can speak for you.
LC – Right, to have a strong advocate who’s willing to go to bat and do what has to be done to honor their loved one’s wishes if possible.
EG – One of the things we know is that people who haven’t had the conversation, then survivors are left more depressed, more guilty and more uncertain about whether they have done the right thing. That was really one of the great motivations for the Conversation Project was really to think about survivors, because all of us want to leave the people that we love feeling good… It’s not that you won’t mourn, it’s not that you won’t feel loss, but that you won’t be tortured by the sense that maybe you’d done the wrong thing.
LC – What do you think accounts for the disparity between intention and action, because you mentioned there’s such a discrepancy between how many people think it’s a good idea to have the conversation, but so few people actually do?
EG – Well the biggest reason for the discrepancy between what you want and what you get is that people haven’t had the conversation. We did that survey two years ago that showed that 90% of people think it’s important to have these conversations, but only 30% have had them.
LC – What do you think is stopping them?
EG – When we looked at those figures, the main thing was that people said to themselves, well, it’s too soon. I’m fine. I’m young, or I’m healthy, or something. And that’s probably a cover story for just not wanting to talk about it, you know? I think I’ll put my hands over my ears … now we don’t have to talk about it. But again, as I said before, we do know that it’s always too soon to have these conversations, until it’s too late.
* * * * * * *
From our experience, we know that there are important follow-ups to starting this essential family dialogue. On the practical side, we advocate keeping the conversation current and relevant. Once documents are drafted, it’s important to make sure that caregivers and other responsible parties know where to find them and to review them.
Part of the coordination of services we provide to our clients is staying in touch with ongoing developments within their families, making sure that new circumstances can be managed properly. With everyone prepared and on the same page, we are more likely to preserve harmony within the family.
The idea that a person can take control and be at peace that their wishes will be honored is invaluable. This forms the foundation for the holistic approach we take to managing the details of a major life transition. The significance of the new Medicare ruling is that now medical providers have additional motivation to actively participate in this process from their end. Between the conversations at home and those taking place in medical offices, we can now create a seamless circle of communication between all parties involved with caring for our loved ones during their time of need.
If you have questions about anything regarding a loved one’s changing life circumstances, please contact us for more information. We offer guidance to families in coordinating medical decisions with financial, legal and other concerns. We provide ongoing, practical support to caregivers while they are caring for their loved ones.
Stay tuned for Part 2 of our conversation with Ellen Goodman, when we take a look at the disproportional impact of caregiving on women.
In talking with Ellen Goodman about her work with the Conversation Project, we touched on the fact that in our society, the responsibility and therefore the consequences of caregiving fall disproportionately on the shoulders of women. This has far reaching implications ranging from personal and practical to economic and political…
LifeCycles – What can you say about the intersection of caregiving with gender, and how a disproportionate burden falls on women?
Ellen Goodman – Well, I think that women are still the caregivers in our society. It’s not that they are the only caregivers – there are a lot of men who are caregivers as well. But I think it’s two thirds of the caregivers are women – both professional and familial…
If you were to parse the most powerful reason for economic inequality, it would be that women are caregiving. Those women whose lives follow the absolute same trajectory of a traditional male are not experiencing the kind of economic cost that women who are caregivers are experiencing. That does not suggest that we shouldn’t be caregivers at all! It just is the reality. And the amount of time we spend caregiving children, but then also the amount of time we spend caregiving elders, and spouses… it’s time out of our economic history… even [Supreme Court] Justice Sandra Day O’Connor left the supreme court to take care of her husband. So it’s just a huge, huge issue that we have not come to grips with at all …
LC – It makes you wonder what will be a catalyst for change in that – if there will be sort of a critical mass of awareness among women. Where will the impetus for change come from?
EG – I don’t think anything will change until women regard this as a voting issue. Until they really understand that it isn’t each woman’s private individual issue, but is a collective issue, and make it a voting issue.
* * * * * * *
Compounding the prevalence of women in the ranks of caregivers is the fact that as of 2014, women working full-time were still only earning 79% of their male counterparts. Taking into account ethnicity, those numbers can drop to as low as 54%. In their current study, The Simple Truth about the Gender Pay Gap (Spring 2016), The American Association of University Women (AAUW) demonstrates this pervasive disparity, which at its current rate, will not resolve for another hundred years.
Given that this is a voting year, it seems like a good time for us to review some of the other facts around this issue, and why it’s important for us to keep these things in mind when choosing who will head up our next administration. The higher responsibility for caregiving by women has an impact on work performance, economic status, physical and emotional health, and overall quality of life.
Here are some recent statistics compiled by the Family Caregiver Alliance*:
* Unless otherwise noted, all statistics were derived from the Family Caregiver Alliance Publication, Women and Caregiving: Facts and Figures –
** MetLife (2011) The MetLife Study of Caregiving Costs to Caregivers. Retrieved (January 2015) from
As you can see, the burden of caregiving in the US clearly falls disproportionately on women. This has an immediate impact on women’s earning capability and financial security, particularly in preparation for retirement. Furthermore, the demands of caregiving lead to increased stress that has negative consequences for women’s physical and emotional health. Understanding this, we at LifeCycles have made it a priority to pay particular attention to the complex set of needs women caregivers need to navigate, both for themselves and on behalf of their families.
One of the main reasons we formed LifeCycles was out of a keen, personal understanding of the implications of caregiving. Founder, Lisa Horowitz took on the responsibility of managing the affairs of several elderly relatives during the last years of their lives, as well as after their deaths. This on-the-ground experience, coupled with her 25+ years as an insurance industry professional gives her the ability to coordinate all of the practical aspects of caring for an aging loved one as their lives transition in significant ways.
Large companies are now offering flexible work schedules and services to support caregiving, and LifeCycles can help you discover and access these resources. We are also qualified to analyze and help you understand all of your available benefits, such as payment for care given by family and friends via Medicare/Medicaid.
In addition to benefits analysis, we take our clients through an in depth review of the necessary documents that must be in place in order to ensure that a person’s wishes regarding this stage of their lives as well as end of life care are honored. We will work, through open conversations, to involve other family members or neighbors in a care plan, investigate the availability of community services and review the work policies that govern leaves of absence to see if we can operate within them while minimizing loss of income and other benefits.
Once we understand the incredible impact of caregiving on women’s lives, we can begin to take steps to protect ourselves and our ability to help our families. Armed with these facts, we are also in a better position to make informed choices about the leaders we entrust to shape policy around caregivers rights and benefits.
As we work to educate people about the needs of our aging community members, LifeCycles is leading the charge to increase awareness about the needs of caregivers in general and women caregivers in particular. Contact us today to see how we can help you better navigate your own family caregiving needs.
Despite documented evidence showing that even thinking about your own death can create a feeling of peace and calm that may lead to a generally better state of health, we’ve seen that people still resist talking about this important subject. We’ve explored with Ellen Goodman, Co-founder of The Conversation Project, the great strides she’s made in helping families to embrace an open dialogue about our end of life wishes. We also know from our own experience here at LifeCycles that direct communication about the more frightening aspects of aging, including preparation for death, tends to make everything less threatening. Taking proactive steps such as drafting a health care proxy or a living will can decrease overall anxiety and establish the basis for further communication.
Clearly, we are in the midst of a cultural shift, by necessity! According to the U.S. Census Bureau, the number of people age 65 and older will more than double between 2010 and 2050 to 88.5 million. In this third installment of our dialogue with Ellen Goodman, we’ll explore the specific ways that The Conversation Project has distinguished itself amidst this shift. We’ll also take a look at the latest tool they have developed to address the needs of families coping with Alzheimer’s Disease and other forms of dementia.
LifeCycles – You have noted that there is a cultural shift now, with death being talked about more readily. Do you think the shift is significant?
Ellen Goodman – I do think there has been a change. Part of that is in the aging of the baby boom generation. And the baby boomers have been the change agents in our culture all the way through. They brought about the Civil Rights Movement, the Women’s Rights Movement, the Gay Marriage Movement… and we now know that the longevity revolution means that we are living 30 years longer than Americans did a century ago.
So we’re dealing with the frailty and the death of our parents, and we are a generation that speaks out, Lord knows… this particular generation is the one… that changed the way we give birth in America… some time ago it was not the doctors who said, please, let’s go into the birthing room, get your feet out of the stirrups, bring the video camera, let’s have the baby in a bathtub. It was not doctors who said that, it was our generation who said you know what, giving birth is not just a medical experience, it’s a human experience. And now we’re saying this about dying. We have a different attitude towards the medical establishment, too… instead of seeing doctors as God, we see them as partners.
LC – Do you think that this sort of move towards allowing people to have more control and have their wishes met around dying has the potential to be a unifying issue among people of different beliefs?
EG – Well it is. It is a unifying issue. I mean if 90% of the people think it’s important to have the conversation, 90% of the people don’t agree on anything, including the national anthem… The thing that really connects people to this issue, too, is storytelling. This generation of… adult children of elderly parents who have children themselves, the “club sandwich generation,” has begun to tell the stories. You mentioned before the cultural change piece … I think that’s a huge part of the cultural change.
When I was a young woman, every woman of my generation had experienced discrimination and harassment – sex discrimination. But we thought we were the only ones. And it was only when we began to share stories that change happened. And now we’re seeing this around end of life. It’s only when we’ve begun to share stories that change is happening. And the thing that’s remarkable to me with my journalist hat on, is that everybody has a story. Everybody. I tell people that I’m involved in encouraging end of life conversations and there’s kind of half a beat, and then out comes a story. And this storytelling piece is really at the heart of the culture change.
LC – What distinguishes the work you are doing from what other people are doing in this field?
EG – We’ve had an initiative that brings the Conversation Project to people where they work, where they live and where they pray. So we’ve been outside of the medical system as well as inside. We’ve had a faith initiative, because people often talk with their spiritual leaders in crisis, and they haven’t necessarily been comfortable having these conversations. We’ve had projects in the business world, because every workplace understands that caregivers are stressed, and that part of meeting that stress is to have comfortable conversations both before and after a medical crisis. And to have them in their communities.
We have PSA’s, and we have a public messaging campaign that has been very wonderful, and people are more than welcome to join our community and have access to all of our materials. We also have about 300 communities in 40 odd states who are connected to us and trying to bring the Project to their own [people].
We also have a bunch of tools… our tools are different. Our tools are about values, our Conversation Starter Kit is about values – what matters to you at the end of life, not what’s the matter with you. We also have a tool for families who are facing serious illness in their children, and we’re just putting one together that should be up in another month that’s out for review by our experts, for families that are experiencing Alzheimer’s and dementia. And that has been something that we were asked for, because that is really one of the hardest pieces of this whole world.
* * * * * * *
Well good news! The new Conversation Starter Kit designed specifically to help families and patients with Alzheimer’s and other forms of dementia is now available. Here’s some information excerpted from The Conversation Project’s latest press release:
At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps individuals and families have “the conversation” about their preferences for end-of-life care. Once the Starter Kit became widely used by health care professionals and families, The Conversation Project began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia.
“We responded eagerly because we, too, have had personal experiences caring for family members with Alzheimer’s disease,” says Ellen Goodman, Pulitzer Prize-winning journalist and founder of The Conversation Project. “We appreciate the difficulty and the importance of having these conversations and collaborated with caregivers, social workers, geriatricians and experts to bring forth a guide to help ease families into this topic. We hope this new resource helps caregivers begin these talks in the early stages of decline. It’s always too soon – until it’s too late.”
Goodman founded the nonprofit after serving as caregiver to her mother with Alzheimer’s disease for many years. She realized that while she and her mother had talked about everything, they never discussed how she might want to spend her final days. With each passing decision, Goodman became unsure if she was doing right by her mother and upholding what her wishes would have been. This new resource hopes to change that fate for families in similar situations.
The new Starter Kit created specifically to address the issues associated with Alzheimer’s disease and other forms of dementia is the first of its kind and is now available free for download on the organization’s website. It provides questions that can help caregivers navigate the approach to the conversation based on the cognitive level of the impaired, and can also guide decision making even if the illness is so advanced that the loved one has lost the ability to communicate.
* * * * * * * * * * *
As always, our goal here at LifeCycles is to help families manage the multitude of practical and administrative concerns they face when dealing with the changing health status of their aging and/or medically challenged loved ones. It’s also an exciting time to be working in this space, as a number of new innovations are being made in clothing, nutrition, housing, architecture and design in general, all of which open new possibilities for ways we can care for our loved ones.
If you are a caregiver and feel overwhelmed by the many issues that need to be sorted out, or would like to discover new alternatives for meeting the needs of your family, contact us to see how we may be able to help. Our goal is to take the stress out of managing all of the practical concerns, so that you can get down to the business of sharing quality time with your loved ones when they need you the most.