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Guest Post: Aging-in-Place: It Can Be Detrimental to Your Health

Anti-ageism activist, social worker, and guest blogger Alice Fisher is back with a moving and deeply informed piece about why aging-in-place isn’t the panacea being so widely promoted. I wish my mother-in-law, who turns 92 next week, would read and believe it. She and Bill, her husband of 69 years, have been paying for long-term-care insurance for decades in order to be able to remain in their apartment. When I said to Bob, “Your mom would be so much happier in a home after your dad dies,” his response was instant. “She’d be happier in a home now.”

Surveys show that most people when asked prefer to spend the last years of their lives in their homes rather than in a community or institutional setting. What they fail to consider…or don’t want to consider…is the prospect of being homebound and spending their last years alone with only an aide for companionship. As human beings, we are social animals who are meant to interact. Living in isolation, for most of us, is detrimental to our health and has been shown to be one of the leading health risk factors contributing to the downturn in the health of older adults.

Understanding that most state governments no longer want to be in the nursing home business and that it is their assumption that it is less costly for both the government and the elderly to remain at home, I can see why the aging-in-place movement has gathered so much steam in recent years. Prevailing ageism also factors in when those who need assistance with activities of daily living choose to protect themselves from the ageist attitudes that pervade the public discourse on “old people.” It feels safer to stay at home.

There is another secret that the aging industrial complex does not like to talk about…the cost. 

If (I will come back to the “if” later on) an elderly person can get the optimum care and needs help 12-24 hours a day, adding this to the overhead of keeping a home, the cost can be astronomical. Because of longevity, the soaring costs of medical care and personal assistance, and the lack of a good long term care program in this country, many seniors today run out of financial resources before the end of life. In my role as a political social worker, I know that Medicaid was not originally set up to be a long term care provider; and I am also concerned about the financial strain this puts on government. There has to be a better way, and boomers all over our country are searching for better alternatives for living out their lives.

Why do I feel so strongly that aging-in-place is not the panacea that our government, our media, and the many senior service providers around the country are promoting?

My story starts with Hurricane Sandy. At the time that Sandy struck the east coast of New York, my elderly parents were aging-in-place in their co-op apartment in Long Beach on Long Island’s south shore. My dad, who has multiple chronic conditions that keep him wheelchair bound and unable to take care of his own personal needs, had an aide. His financial resources had already been depleted by the cost of his care for the two previous years, and he was receiving Medicaid benefits for home care. Although he really needed 24/7 care, the most that Medicaid would approve was 12 hour live-in. (This is where that “if” comes in). Twelve hour live-in means that the aide lived in with my parents but only provided care for 12 hours a day. It seems that my 90 year old mom was determined to be able to care for him the other 12 hours. Well, let me tell you, a 90 year old cannot care for another 90 year old without compromising their own health and well-being. As a result, my parents became emergency room regulars at Long Beach hospital, just a few blocks from their home. In turn my sister and I were also emergency room regulars. A couple of months before Sandy hit we began to have a discussion about aging-in-place and that it might no longer a viable option for our family. And then came Sandy. 

When people ask me about aging-in-place, I tell them, “It works until it doesn’t.”

After evacuating my parents with aide in tow and all the attendant chaos around relocating them, we came to the realization that they could not return to their home. All of the services they used were compromised or non-existent. The hospital was washed away and has not opened to this day. My mom’s doctor’s office was under water, leaving her with no medical records. Fortunately my dad’s medical care was being provided at home by the Veterans’ Administration, so his care could continue without too much interruption. The only blessing we could see at the time was their car, which floated down the road with every other auto in Long Beach. With the advocacy and support of my colleagues in the aging community of NYC, the Hebrew Home at Riverdale came through and provided a permanent home for mom and dad. 

My mom, who passed away this past January, spent the happiest year of the last ten years of her life there. She was 91 years old. Her life in Long Beach was becoming more and more an isolated existence. Most of her friends had died and the burden of caring for my dad kept her from leaving her apartment except for her trips to the supermarket and doctor. With the responsibility for my dad lifted, she was now free. Although frail and deaf, her cognizance was excellent. She made wonderful friends, joined in activities, began going to synagogue on Friday nights, went on shopping trips, and began to care again about what she wore and how she looked. Her best friend at the Hebrew Home was Rose, who was born deaf and was teaching my mom American Sign Language. She attended several 100 year old birthday parties. She and my dad celebrated their 70th wedding anniversary at the Hebrew Home with all their new friends in attendance. The other thing I noticed was that she was secure about having her own needs met…no more 911 calls and emergency room visits. She fully embraced her new home.

My dad, who needed 24/7 care resided in a different section of the facility, where he remains today. All the buildings on this beautiful campus are connected to each other, and my mom saw him every day and was his best friend and advocate. The common denominator among my dad’s floor mates is their inability to care for their own physical needs. There is, however, a huge cognizance spectrum. My dad seems to be located about mid-point on the spectrum. It is easy to discount the inner humanity among these people who are often confused, do not make sense even when talking to each other, and sometimes do not even seem to be aware of their surroundings. I must admit that my own ageist attitudes often came to the surface when I would visit his floor. One extremely emotional incident changed my entire perception of who these people are.

My mom died of congestive heart failure. She did not suffer much at all. She had only been diagnosed about three months before her death and was only ill the last three weeks, spending the last week in the hospital. Although we tried to prepare my dad, his memory issues prevented him from fully grasping the situation. After she passed away, my sister and I went to tell him. He was in his dining room just about to sit down to dinner. We wheeled him out to a private area and broke the news as gently as we could…but there really is no gentle way. He reacted as was expected and appropriate. It was very sad. When we were feeling the need to leave, dinner was over; and most of his floor mates were out wandering the halls in their wheelchairs and with their walkers. As you can imagine, we were having a difficult time leaving. I walked over to one of the aides, saying, “We really need to go, but it’s so hard for us to leave him alone and just say ‘bye dad, we’ll see you tomorrow’.” She waved her finger and said, “No, no. You see all these people. They are just hovering, waiting for the two of you to leave.” As we waited for the elevator, my sister and I could see into the area where we left my dad. One by one, each of his floor mates came up to him, and each in their own way told him how sorry they were. Some just patted his arm, others hugged him, and as we were getting on the elevator, we watched the aides help them form a circle around dad. I turned to my sister and said, “He’s not alone.”

 

* * * * *

Alice Fisher, M.S., M.S.W. is an aging Boomer who works in the office of NYS Senator Liz Krueger, where she developed and oversees “Senator Liz Krueger’s Roundtable for Boomers & Seniors” and councils the Senator’s senior constituents on issues of housing, healthcare, quality of life, and end of life. A long time social justice advocate, Alice is developing anti-ageism programs and working with a diverse grass roots group in New York City to create awareness of the ageism that permeates our culture. Read her Call for Radical Aging here. http://www.thischairrocks.com/?q=post/call-radical-aging

 

For more information, contact Alice at confrontingageism@gmail.com, and visit the Radical Age Movement website and the Radical Age Movement Facebook page.

 

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Tackling “Aging Well” at the Institute for the Future’s Health Horizons Conference

I’m just back from a conference hosted by this 30-year-old Palo Alto think tank, the theme of which was “Living Longer/Aging Well.” Most of the attendees were from healthcare and pharmaceutical companies, and I wasn’t sure how hospitable they’d be to my message about the medicalization of old age. In cultures with meaningful social and economic roles for older people, physical health is just one aspect of aging, but in ours, sickness takes center stage. And as the population ages the medical-industrial complex will depend more than ever on the old for its profits. I needn’t have worried; I got a standing ovation. (Okay, so did all the speakers; it was a mandatory “exercise.”) More gratifyingly, many subsequent speakers referenced stuff I said, and I hope I’ll get invited back. One thing we know for sure about the future is that it’s going to contain a lot more old people. Overturning myths and stereotypes about age and aging ought to be central to Institute’s mission across all their research domains, not health alone.

 

One thing the conference nailed from the get-go was an emphasis on the individual. Program Co-Director Bradley Kreit opened with the health records of a 70-something-year-old man with a number of serious issues, including diabetes and cardiovascular disease, and then a photograph of the person: his trim, tan, father-in-law standing next to his racing bike. A perfect way to make the case that people shouldn’t be reduced to symptoms.  Each table also got to interview an older person, ours being a Japanese-American serial entrepreneur, and a series of exercises required us to connect the many Big Ideas floating around the room—these are futurists, after all—to his circumstances. Much time was devoted to technology of all stripes, from caregiving support networks to “cognition enhancement” to offset memory loss—this is Silicon Valley, after all—and there was much confidence in the potential for social shifts and innovations to address the needs of “person-centered aging.”

 

That optimism was reflected in the conference subtitle, Aging Well, which I took issue with in my Q&A. The positive language is seductive, but it overlooks the role class plays in determining who gets to age in the first place, not to mention how “well” or “poorly.” Everyone can make sensible choices, but barriers like heavy caregiving responsibilities, inadequate health care, and economic hardship make it more difficult. Value-laden language places the burden on the individual by implying that if you end up sick or exhaust your savings, it’s your fault, which is unfair and diverts attention from the underlying social and economic issues.  And all the resources in the world can’t insulate against time or luck. 

 

Research Director Rachel Maguire began her summary by pointing out that people in healthcare tend to think of “the future of aging as the future of physical aging,” which is far too narrow a lens. I also liked some of her broad, messy, age-neutral interdisciplinary “Insights”: that workplace wellness programs should include geriatric mental health, support caregiving by and for all ages, and include end-of life discussions and services, and that design should be oriented towards people’s needs and preferences rather than specific age-based cohorts. (Older people need play spaces too. Swing-sets at bus stations in Montreal are used by olders as much as by kids, and  Brownsville, Texas, has just undertaken to build first ever playground for people of all ages with handicaps.) Her closing image was of a heavily-tattooed, long-haired, dentistry-free older man smiling on a park bench saying, “I’m happier than a pig in shit.”

 

“How to we balance big-picture statistics with the humans behind them, to make sure that solutions are truly person-centered and as available to as many humans as possible?” asked Maguire. Good question. I’m glad these guys are chewing on it. 

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using kids books to tackle ageism

I’m not an Elmer’s-glue-and-glitter grandmother, but I’ll read to my grandchildren till my voice gives out. Lindsey McDivitt knows there are lots of people out there like me, and that children’s books are a great way to bridge generations and combat ageism in the process. We met online and then had the pleasure of meeting in person in Ann Arbor when I was on the Second Wind Tour last week.  Here’s an entertaining post from McDivitt’s blog, A is for Aging, B is for Books, about the Second Wind event, myth-busting, and why children’s books need to incorporate not just different races and cultures but different ages as well. 

 

 

 

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They didn’t warn me I’d have to sing & dance

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But that’s what happened when Nate Richardson and Samité wrapped up each show of the Second Wind tour — audience members were up on their feet too. This was in Minneapolis last Friday, at the end of the third week of this 25-city tour. On stage with me: Susan Frazier, who spoke about the Eden Alternative’s humane model of long-term care (and who could actually sing), psychiatrist Janet Taylor, who described how the older brain is wired for change, geriatrician and guiding spirit Bill Thomas, and Joel Theisen, CEO of Lifesprk, our regional sponsor.  It was an extraordinary experience, and if it’s true that doing something that scares you builds cognitive reserve, stepping out on a giant stage without notes in five different cities has built me enough to coast for a while.   

A number of the regional speakers work in long-term care, among them Helene Wineberg of Forward Chicago. Helene showed a short video in which a lovely, animated woman from a Forward Chicago community described her “funnel theory of life.” As time passes, things slip out the bottom, her example being a childhood friend now lost to profound dementia, “so you have to keep putting stuff in.” The top of the funnel is big enough to hold all kinds of new things, whether people, tastes, ideas, or activities. I like this metaphor, and I’m planning to keep tossing stuff into that funnel. 

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The Second Wind Tour’s #EndAgeism Campaign kicks off today!

A week from today I’ll be joining Bill Thomas & team onstage in Columbus for the Midwest swing of his Second Wind Tour as its anti-ageism Agitator in Chief. So far the tour—a five-hour “nonfiction theater” combination of words, film and music—has centered around personal growth and reimagining aging, but from this point out they’re taking advantage of having me on the bus to focus on ageism. 

 

Based on slogans that my growing network of activists and age scholars and I came up with—thank you, everyone!—the Second Wind team has developed nine graphics for this image-based campaign, which will run off the Second Wind Tumblr and onto Facebook, Twitter, Pinterest, and Instagram. Please follow wherever you hang out, and use the hashtag #EndAgeism along with #secondwind to catch performance updates. Here are next week’s venues: five cities in five days!  Good thing the seats on the bus recline.

 

Thomas is a geriatrician and a renowned expert on humane institutional long-term care, and I’ve long appreciated his outspoken position on ageism. He knows that the way we institutionalize olders living with frailty is a symptom of the broader issue—the social construction of aging as a problem—and that the only real remedy is to end discrimination and stereotyping on the basis of age. We hope the Second Wind Tour’s #EndAgeism Campaign will bring practitioners and policymakers around to this point of view, and I’m very excited to be spearheading it. 

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Why not be a old lady?

One of the nice “keep up the good work” responses to my mass email last week came from my friend Robin. Her note went on to say that, “Even my mom, who just died at 95, wasn’t an ‘old lady.’ Up until the last few days she really fought like a tiger . . . until her body just gave out.  She simply died of old age.” She had lived with debilitating arthritis that set in in her late 40s, and “found a lot of meaning knitting baby items endlessly for the City of Hope and other charities.” Female, in her ninth decade, yet not an old lady? Robin’s loss was so recent that I resisted the impulse to point out that this sounded a lot like age denial, but it got me thinking.

 

“Little old lady” is clearly a demeaning descriptor; “old lady” less so. Robin was repudiating the term in anti-ageist solidarity . . . or was she? I ran the exchange past an acquaintance who’d been speaking fondly of her Armenian grandmother, who’d died the year before at 101, physically agile, affected by severe short-term memory loss that pretty much compelled to live in the moment, content and cheerful. “My grandmother wasn’t an old lady either,” was his response. Why not? “It seemed like there was still so much life in her.”

 

What changes if we swap “woman” for “lady?” An overdue and obvious upgrade, but it still leaves “old” stuck in the craw, and there’s the rub. You hear people say “I don’t feel old” all the time. What they mean is “I don’t feel ugly.” Or useless. Or helpless—or any of the other bad things for which “old” has become an all-purpose placeholder. To Robin, it meant idle. To my Armenian acquaintance, tired out. To a guy who came up to me after a recent talk, enfeebled. “My aunt’s 90 but she’s not old,” he insisted, as though it were contagious, and as though I’d approve of his distancing delusion. 

 

To reflexively choose “not old” as an identity, whether for ourselves or our relatives, impoverishes us all. It robs us of the chance to form community, and strips away the experience that distinguishes paddler from pilot, sapling from sequoia, novitiate from seasoned hand, and from the pains and perks attendant to both states. There’s pride in “old” if we claim it, as the Older Women’s League and Old Lesbians Organizing for Change have done, and much to be gained in refuting its equation with loss and decline. 

 

I know I’m not young—do not call me “young lady”—but I don’t think of myself as old either. I certainly qualify, if oldness is measured by time from birth or defined by my laptop’s dictionary: “having lived a long time.” I prefer “older,” which emphasizes that age is a spectrum. I reject the old/young binary: that imaginary line in the sand after which it’s all supposed to be downhill. The problem lies in equating “old” with diminishment alone. The reality, as experience proves, is far more nuanced and positive.

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Guest Post: A Call for Radical Aging

 

Alice Fisher, M.S., M.S.W. is a Boomer who works in the office of NYS Senator Liz Krueger, where she developed and oversees “Senator Liz Krueger’s Roundtable for Boomers & Seniors” and counsels the senator’s senior constituents on issues of housing, healthcare, quality of life, and end of life.  A long time social justice advocate, Alice is developing anti-ageism programs and working with a diverse grass roots groups in New York City to create awareness of the ageism that permeates our culture.

 

In the 60’s we raised our voices to put an end to racism, sexism, and to end a war.  Now, we are in our 60’s and we need to dig down deep to raise those voices again to put an end to ageism.

 

If there is any certainty in this world, it is that we are all journeying in the same direction.  We are all going to age, we are all going to, hopefully, get old, and we are all going to die.  How we age and how we prepare for the last part of our life’s journey will be shaped in great part by the society we live in.  

Do we want to take that journey in an ageist society?  As women, do we want to remain invisible, spending time and money trying to erase the signs of old age and wisdom from our faces and bodies while hoping someone will see us and/or hear us?  As men, do we want to cling to myths of virility and strength, trying to deny the inevitable? Or, do we want to be respected, even revered, for lives lived and the knowledge and experience that comes with actively living through the many challenges we’ve faced? 

As boomers and seniors, we have an obligation, a duty, to make our voices heard, speaking up for and molding the kind of society that will not see us as the “other”.  Many of us raised our voices in the 60’s to help create the civil rights movement, the anti-(Viet Nam) war movement, and the women’s rights movement.  Now we are in our 60’s and we need to dig deep down to re-energize those voices today to create a Radical Aging movement.  

Longevity is here.  It’s everywhere.  It permeates the media, in professional journals, memoirs, movies and theatre, you name it.  More of us are going to live to be older than ever before in history, and our children and grandchildren even older. The effects of longevity are tenfold, affecting our health care choices, our work environments, and our relationships within families.  You may have already bumped into the challenges of longevity as caregivers of your aging parents who are in their 80’s, 90’s and 100’s. If you haven’t been there yet, it will, I can assure you, be one of the truly life-impacting eye openers that you experience on your life’s journey.  It is a front row seat view into a future that needs a movement to change it.

We are a generation that has lived through great societal changes, some good and some not-so-good.  Some of the positive changes still need refining, but there is no doubt that we made them happen.  Some I mentioned above; civil rights and women’s rights, and more recently, gay rights.  Our lives have been influenced and molded by constantly evolving technological innovations; we have new ways of communicating through social media.  We Skype or have facetime with our families who are more often separated by greater and greater distance.  We’ve moved from an insular world into a connected world.  Once only talked about, we can now see, often in real time, how what we do in our personal lives impacts other lives, not just in our own communities but on a world-wide level.  Medical research and the attending technology have contributed to the unprecedented length of life, and this is presenting challenges that are only first being addressed.  On every level and in every walk of society we are finding choices that were never available before.  We spend a lot of time trying to determine what is available to us and what we really want.  

Yet, as we celebrate longevity, we stigmatize growing older.

It is time to change the accepted language of aging. All the descriptive aging stereotypes that pervade our culture and collective conscience need to become non-p.c.   We are so much more than boomers, seniors, senior citizens, aged, ancient, crones, oldsters, codgers, golden agers, geezers, old-timers, grannies…and here’s on I just came across…coffin dodgers.  Any of these sound like compliments?  We live in a culture of age and death deniers.  Putting old people “out to pasture” is no longer an acceptable metaphor.  Neither is putting them out to the golf course, shuffleboard, nor bingo.

As we age we become more and more diverse.  The longer we live, the more opportunity we have to be shaped by our life experiences which render us more dissimilar than alike.  One size does not fit all.  There is diversity in how we age; biologically, physically, intellectually, emotionally, and spiritually.  We bring “value added” to society.  Yet, in a culture of ageism and denial, to be recognized for that “value added” is an uphill struggle, and it is time for us to take up the struggle.  We proved in the past that we can effect change, and we are just going to have to dust off those banners and slogans, put on our most comfortable walking shoes and get out there again.

I leave you with this anecdote from my own experience:  I’m 60 years old and sitting in a class on public policy for the aging.  Next to me is this very sweet 20-something young woman, arduously taking notes and following the instructor’s every word.  After hearing the statistics on senior health issues and senior poverty, she turns to me and says, “I’m never going to get old.”  My response is, “I really do hope that you will. 

 

For more information, contact Alice at confrontingageism@gmail.com, and visit the Confronting Ageism Facebook page and the Radical Age Lab website.  

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posts are up on the Silver Century Foundation website

 

I’m delighted to be joining Margaret Morganroth Gullette, among other writers, on the website of the Silver Century Foundation, which has an excellent mandate. The foundation “challenges entrenched and harmful stereotypes, encourages dialogue between generations, advocates planning for the second half of life, and raises awareness to educate and inspire everyone to live long, healthy, empowered lives.”

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on “queering” gerontology

Writing in the new journal Age Culture Humanities, Chris Gilleard of London’s University College salutes the cultural turn in age studies and its attendant view of aging as socially and culturally constructed (along with race, gender, disability, and sexuality). Within this broader framework, aging studies “queers” its older and more established partner, gerontology, Gilleard observes. He also raises interesting questions about the risks of taking this too far. “Is it really only the state that makes our date of birth an unchanging aspect of our identity? Is it only the market that tricks us into fearing growing old? Is it just the operation of bio-politics that divides up our lives into distinct sequences? Can we risk ignoring the corporeal systems we have in common with other living beings?”  Good stuff.

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Silicon Valley’s white, male elite is encountering discrimination for the first time. Guess what kind?

Ageism in Silicon Valley has been all over the news lately. The New York Times Magazine ran a cover story titled “Silicon Valley’s Youth Problem.” Male engineers in their twenties are getting botox and hair transplants before key interviews. “The Brutal Ageism of Tech,” a feature story in the New Republic, described a swelling cohort of “highly trained, objectively talented, surpassingly ambitious workers” sidelined “for reasons no one can rationally explain.” 

Prejudice is irrational. Age discrimination is illegal. It’s bad for business: diverse workplaces are more productive and profitable; good hardware projects (not sexy!) don’t get funded; consumers lose out. The underlying industry premise that youth drives technological innovation is baseless. All this has been documented for decades. Why the attention now? Because for the first time in their lives, people at the top of the food chain—smart, skilled, straight, well-paid, non-disabled white guys—are experiencing discrimination. It happens to be because they’re old enough to have kids. Or mortgages. Or receding hairlines.

“Welcome, men to our world,” writes Ann Friedman in a terrific piece in New York magazine called “Silicon Valley Disrupts Discrimination: Now it’s for Middle-Aged White Guys, Too.” That would be the world of women huddled behind office doors hooked up to breast pumps trying to play down the fact that they’re parents, not whiz kids, or reluctantly learning golf in order to meet male clients, for example: “the world of being hyperaware of how you’re perceived, every moment of every workday.” As she notes, the burden of trying to conform to the dominant culture applies doubly and triply for people of color and gay people and people with disabilities. Friedman also notes that when women face bias, we tell them to lean in, and when it happens to people of color we barely notice, but that when men confront biases, we look for what it reveals about the bigger system.

Ageism is still so unexamined that age doesn’t make Friedman’s short list of discriminatory categories; for her the big win in all the media coverage is a fresh take on “now-familiar Silicon Valley sexism”. It’s not missing because these are stories about age discrimination either. It’s missing because most people think of aging only in biological terms (and within those confines, only as decline). It never dawns on most of us that the experience of reaching old age—or middle age, or even just aging past youth—can be better or worse depending on the culture in which it takes place. (Hint: steer clear of the United States, especially Hollywood and Silicon Valley.) Like racism and sexism, ageism is a socially constructed idea that has changed over time and that serves a social and economic purpose—to legitimize and sustain inequalities between groups. These prejudices aren’t about how we look, they’re about how people in power assign meaning to how we look. These tech guys have lost their grip on power merely because they are no longer in their twenties

Friedman suggests that Silicon Valley may inadvertently have produced an innovation here by “disrupting” discrimination itself. (In industry parlance, a “disruptive” innovation unexpectedly displaces an established [older] technology.) For the first time people are looking at the underlying values of tech culture and questioning its obsession with youth-and-hipness. The Bay Area’s extreme manifestation of this mindset doesn’t make it any more palatable than garden-variety discrimination on the basis of having dark skin or a wheelchair or a vagina or actual gray hair, but that’s what finally garnered some attention. The coverage is revealing cracks in the “meritocracy” that has served this elite so well on all other fronts. Let’s hope it jimmies them wide open, and brings ageism into the discussion.