General Hospital Tackles Alzheimer’s Disease, And Gets it Right

by Juliet Holt Klinger

I am a member of an exclusive club and, if you remember when Luke and Laura got married or know who Robert Scorpio is, you probably are, too. I admit it: I have watched ABC’s “General Hospital” for over 40 years now – it is my guilty pleasure. I know I am not alone; I have many friends and colleagues who are equally hooked. And while I no longer schedule my days around mythical Port Charles, thanks to my DVR and the ability to zoom through the actual soap commercials, I never miss an episode.

Over the years the show has tackled HIV/AIDS, breast cancer, rare blood disorders and, of course, the requisite random bouts of amnesia necessary for exciting plot lines. Port Charles, home to “General Hospital”, is also known for inhabitants who can, remarkably, return from the dead. But in the last few months, the series has embraced a topic closer to reality for many of us. Mike Corbin, the father of Sonny Corinthos (Port Charles’s loveable crime boss) has been diagnosed with Alzheimer’s disease and Sonny and his extended family are caring for Mike at home in their mansion on Harbor View Road. I cringed when I first saw the glimpses of this storyline. Were they going to do it justice? Will this be a story only of decline or will they feature scenes of Mike doing well and living a good life with the diagnosis?

Although the storyline is still unfolding, I have to say that so far, so good. The writers have, in my opinion, created scenes that capture the real-life experience of many American families coping with Alzheimer’s. The scenes with Mike and his family have covered the shock of receiving the diagnosis, the disappointment over minimal options for treatment, and the increasing stress that 24/7 care partnering can have on a whole family system.

Parade Magazine recently interviewed head writer Shelly Altman, who said they are taking the storyline seriously because the disease affects an estimated 47 million people. Altman notes that they chose the disease because “everyone out there has been touched by Alzheimer’s.” While they aren’t working with a formal organization, they are researching the disease, its symptoms and how it affects families and caregivers, and I see the result as an accurate portrayal.

Even Maria Schriver, founder of the Women’s Alzheimer’s Movement, made an appearance on FOX’s Good Day LA with the actors who play Mike (Max Gail) and his daughter-in-law Carly (Laura Wright), to discuss the impact of this topic on daytime TV. Maria applauds Laura’s portrayal of the adult daughter caregiver and thinks that the fans outpouring of support reflects the shows accuracy because adult daughter caregivers are dealing with the same stress.

I particularly like the role that the hospital social worker, Stella, is playing in helping Mike and his family understand the changes and progression of the disease, along with providing sage advice about planning for the future. I also appreciate the many scenes where Mike is continuing to remain involved and engaged in life and as a contributing member of his family. Weaving in this positive narrative about living with dementia is truly where Altman and her team get it right.

So in my opinion, a big round of applause is due to General Hospital and its team of writers for the accuracy of this storyline so far. Like many fans for which this has hit home, I will be glued to the coming episodes to see how the progression of the disease is handled. My hope is that they continue to tell this story with the dignity and respect they have shown it so far.

This piece originally appeared on Brookdale News’ website on June 18, 2018.

Everyone Has a Story to Tell

From the Pioneer Network’s Feb. 20th, 2018 newsletter:

By Jay Newton-Small
Joe was panicked, frantic. The bell was ringing for lunch, as it did every mealtime, and he was upset. He was grabbing people and trying to drag them away from lunch. This had been happening for months, and no one knew why Joe hated mealtime. The community in which he was living had tried everything: changing corridors and dining areas, cooking different meals. But nothing seemed to calm Joe down. Joe had advanced Alzheimer’s and he couldn’t tell you any more why he was upset: his words came out jumbled, a word salad.
Joe’s caregivers looked at his records and saw he’d been a lifelong certified public accountant. They didn’t see any flags or alerts about dining or meals. Joe’s family lived far away and his eldest daughter, who’d become his caregiver after his wife had passed, was overwhelmed with her own five children and a traveling salesman husband. So, she hadn’t answered calls. Finally, MemoryWell did a profile of Joe for the community newsletter, interviewing his other children by phone. And there it was, a tiny detail that explained everything: Joe had been a passionate volunteer firefighter for more than 30 years. When he heard a bell, his brain told him: danger, evacuate. He’d been trying to save people. The community changed the bell to a chime and Joe enjoyed his meals peacefully from that point on.
Joe’s name here has been changed, but the story is real. And it shows the importance of knowing the person for whom you are caring. A person isn’t a job or a title. It’s who we are, and often that essence isn’t captured on a form. Maybe you are an insurance salesman, but your real passion lays with missionary trips you’ve taken for decades to Brazil. Maybe you are a homemaker, but also win local quilting competitions. Maybe you are a lawyer who writes screenplays and scripts on your off days and weekends. Maybe you’re a waitress who also organizes social awareness rallies.
So much of what makes us us can’t be summed up in a series of descriptions. We aren’t just women and men, black, white, Hispanic, Asian, gay, straight, Southern, western, conservative, liberal, athletic or a homebody, poor or rich, pet loving or hating, a Baby Boomer or a Millennial; we are an intersection of so many things that make us unique. And it’s only by telling our stories that we can know the fullness of that person.
The idea of intersectionality was first coined by British sociologist Beatrice Potter Webb in 1913 but it was popularized in modern culture by Columbia Law Prof. Kimberlé Williams Crenshaw in the 1980s in looking at how anti-discrimination laws oversimplified racial and sex stereotypes. In the years since, it’s been applied to everything from Navy ships to Silicon Valley recruitment practices.
But in the case of healthcare, intersectionality’s biggest impact has in many ways been in the implementation of the Affordable Care Act. As healthcare stakeholders figure out how to show value-based care, as mandated by the ACA starting in 2017, they have realized that knowing the patient and caregiver means knowing a lot more than their diagnosis. And, here again, is where stories come into play.
Everyone has a story to tell, not everyone can tell it. Joe was no longer to tell his story. Others struggle with expression or writing, or are simply shy. So, how do we get at the person, their story? We find storytellers to help. MemoryWell is one such service. Of course there are others, LifeBio, the Society of Personal Historians, LifePosts, The Life Story Foundation Legacy Letters. However you do it, what’s important is you’re putting the story—the person—in person-centered care. And like with Joe, that can make all the difference.

 

Struggling to Care at Home for an Aunt with Alzheimer’s

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A notepad from Snoo’s home reminding her of a visit. Photo credit: Jenn Director Knudsen

Author Jennifer Director Knudsen’s grandmother died of Alzheimers; now her family is struggling to care for her aunt living with the same disease

By Jenn Director Knudsen/Portland

Mom always described her older sister as the smarter, more talented, more attractive of the two of them. That was the narrative I heard growing up.

However in adulthood, Aunt Susan — whom my little sister and I affectionately referred to as “Snoo-Pooh” or “Auntie Snoo” — seemed to get the short end of the stick.

Snoo had a crummy first marriage that didn’t yield children, though I’d understood that she’d wanted to be a mom. She then lived alone for years, with her loving and loyal dog, in a multi-story Victorian in a Seattle suburb. She worked for the public transit company in a complicated job that demanded cerebral and solitary work. A divorcee rattling around her very spacious and slightly creaky home, my aunt always seemed lonely, or, at least, satisfied with solitude.

And, she was both very set in her ways and loath to make a decision. (If she did manage to make a decision, it was very long in coming. As a teen, my mom and my aunt’s friends used to tease her, calling her “Flash.”) While her sister and her two nieces — my younger sister and me — lived in Portland, she remained three hours north, stubbornly and fiercely independent.

A Second Take on Life

Flash-forward decades. A family friend sets up Auntie Snoo with a divorced doctor in Portland, and they hit it off. So in love was my aunt that she contemplated moving to Portland and living with her boyfriend. Years later, she at last decided to relocate to Portland, and eventually she committed to living with the good doctor. And years after that — once my sister and I had become mothers ourselves, and the doctor’s children also had become parents — my aunt and new uncle recited their vows in a moving service in the local county courthouse.

About the time her life’s love was stricken with a first bout of cancer, Aunt Snoo seemed to be slowing down, too. His physical decline mirrored her cognitive slide. My uncle rallied and his doctors said he might live three more years. Then, a second and more virulent bout of cancer hit, and he was dead within weeks.

 Alzheimer’s in the family

My uncle had rather cleverly covered for what to immediate family was Snoo’s obvious cognitive decline. She started to look and act increasingly like her own mother had, who, to me, always seemed kind of out of it and slow to keep up with those around her. My mom — not my aunt — had become their mother’s de facto caretaker. For at least 10 years, Mom frequently schlepped the half-hour to my grandmother’s house to ensure she was well taken care of. It took decades for my grandmother to completely succumb to Alzheimer’s, and eventually, a wonderful care facility became her home and my mom’s respite.

Agreeing that it was time to move her mother into a facility was a very long road for my mom. She worried constantly the guilt of “institutionalizing” her mother would mark her end. And yet, once my grandmother was ensconced in her facility and had a part-time caretaker, Mom was able gain back more of her own life. Toward the end of my grandmother’s nearly 95 years, she remained capable only of hitting certain musical notes in lieu of speech. Da-da-da, she’d intone.

And, now, two years a widow, my aunt, now 75 years old, is following her mother’s decline.

Snoo’s Alzheimer’s

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Snoo’s pillbox      Photo credit: Jenn Director Knudsen

It’s frightening to behold, and the memories of their mother’s Alzheimer’s haunt my mother. The feelings of guilt have returned, as has the fear, all exacerbated by my aunt’s rapid decline, much faster than her mother’s.

Mom has taken to placing increasingly fraying bandages over the proverbial wounds around Snoo’s condo. Snoo has a huge calendar pinned to one wall near the telephone. She used to be able to write events and appointments into the big daily squares, but no longer. So Mom does it for her, wanting to believe her sister will remember to consult her calendar and understand what’s written on it. The microwave now has written instructions taped to its keypad. They go unheeded; just recently a long-forgotten meal rotted, having sat well beyond its expiration date in the unused microwave. Mom wrote a pill-instruction chart for her sister, but Snoo doesn’t remember where it is — taped to the inside of the cabinet where her pill bottles are located. Mom has tried to remind Snoo she has a closet full of clothes, but my aunt wears the same thing every day.

Together, Mom and I have toured facilities that I believe would be amazing for my aunt. But Mom isn’t so sure; she remains stymied by fear of guilt for “putting her sister into an institution.” Fortunately, Aunt Snoo has a part-time caretaker and their adoration of one another is mutual. Snoo frequently tells me about what a wonderful cook she is; when she forgets her name, she’ll refer to her as “this little angel.”

So while she can enjoy the companionship and assistance both the caretaker and Mom offer, Snoo remains her mulish self. As the dementia has clamped down with increasing force, so, too, have Snoo’s most difficult personality characteristics. Stubborn, yes, and also snippy. Snippier than she ever was before.

Mom shared with me recently that once their own mother’s decline had reached a certain, terrible level, she used to leave her side, get behind the wheel of her car, and cry all the way home. She confessed that pattern has begun all over again, this time with her sister the one left behind.

 Where do we go from here?

I hate seeing my mom suffer like this, always believing her genetic clock is ticking toward dementia just like her grandmother and mom’s — and now her sister’s — had before her. She keeps fighting for her sister to live “independently.” That’s what Snoo says she wants and she insists she can pull off. Until another day without food and her thyroid pill go unswallowed.

Where do we go from here? All signs lead to the same one or two excellent facilities for people just like my aunt: those who are loved and desperately need the scaffolding that family members struggle to shore up without realization or recognition or respite.

And I worry that as I lose my aunt, the stress of caring for her could mean prematurely losing my mom, too.

–Jenn Director Knudsen is a freelance journalist and editor in Portland, Oregon, and co-owner of 2B Writing Company.

What It’s Like to Live in a Dementia Care Unit

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An entrepreneur wanted to know, so she checked herself in

By Jay Newton-Small

The first thing I noticed was the lack of hot water. I’d just gotten in from the airport and wanted to shed my travel dirt. The water wasn’t cold, but I like scalding showers — the kind that make you feel reborn — and the highest heat setting was only producing a lukewarm stream.

And then I realized: This is to protect me from myself. Well, not me, but the usual residents in this community.

I spent a recent week living in a locked dementia unit in Brookdale Senior Living’s Fort Collins (Colorado) community as part of Brookdale’s Entrepreneur-in-Residence program. My startup company, MemoryWell, is an older-adult storytelling platform. We aim to replace clunky questionnaires that families hate to fill out when they put loved ones in assisted living with professionally told stories.

Stepping into Her Father’s Shoes

Brookdale’s objective is to give entrepreneurs the opportunity to test drive their products in a care setting, getting feedback from residents, families and staff.

But for me, the experience was also a personal one: My father spent the last four years of his life living in locked dementia units. I had visited him plenty, but always wanted to know what his experience had felt like. This was my chance.

As I hurried through my lukewarm shower, I couldn’t help wondering if my father had had similar thoughts. He, too, had loved hot showers. Had he made the connection why his showers were tepid?

Towards the end of his life, he’d refused to shower. I knew this was because he needed help showering and hated having people touch him while naked. But I also wondered if he also had stopped enjoying showers and thus didn’t see the point.

Living in a Dementia Unit: Fewer Choices, Fewer Risks

I was surprised to find that living in a dementia unit wasn’t so different from living, well, anywhere else, except that there’s a larger safety net. The food isn’t too spicy or too challenging to chew. And as to not confuse people, there’s no choice — allergies and preferences are taken into account.

The hallways have subtle rails to grasp, should you lose your balance, and ledges outside doors to place personal items, helping you identify a particular room as your own.

The bathrooms all have walk-in showers and railings to prevent slipping. The lights are set to motion sensors so you’re never moving in the dark. And the ends of corridors are painted a different color to help people recognize that this is the end, time to turn around.

Restless Nights

I was staying in the Crossings division of Brookdale, whose 1,100 homes makes it the largest provider of senior care in America. The Fort Collins community also has an unlocked assisted living facility and a Clare Bridge community attached. Crossings are for folks with mild cognitive impairment; Clare Bridges are for those with more advanced Alzheimer’s and related dementias.

One of the common traits of the diseases is wandering, which is why Crossings and Clare Bridges are locked communities. My father was a wanderer. He walked and walked and walked. By the last two years of his life, he hardly slept. He’d sit down and nap occasionally, but he was up most of the night wandering the halls.

I’d wondered what his nightlife had been like. Most people in the Crossings slept normally, so I went over one night to Clare Bridge. There I found three staffers: two aides folding laundry and a nurse assistant updating charts. The television was playing Mad Money, a 2008 Diane Keaton caper movie.

Like in the Crossings, the television was turned up much louder than normally needed. Most residents have some hearing issues, so the TVs and music are always cranked up — no matter the hour. Sometimes, night staff would hear a loud noise and would rush to a resident’s room, worried the person had fallen only to find he or she couldn’t sleep and had turned on the TV with the volume set very high.

Looking Beneath the Behavior

It was nearly midnight and the night staff was doing their daily errands: folding laundry before the TV with a Colorado fire crackling below and setting the breakfast table.

They’d just put to bed one of their two usual night wanderers and expected he’d be back up soon. They often walked with him, doing their midnight and 4 a.m. diaper checks. A World War II veteran, he still suffered from post-traumatic stress, they suspected. He slept with the lights on and when they walked with him, he often wanted to see the veterans’ wall honoring all those who’d served in the community. During the day, the staff found that the only way to calm him was to have him paint ceramic garden gnomes. The art studio had a little colony of them, perfectly adorned in an array of colors.

At night, I locked my door. I’d found that during the day, I had many unexpected visitors. Wanderers would open my door and peer into my room curiously. Part of wandering is the exploration, looking at new things. All too often, residents’ knickknacks disappeared, only to be found in others’ rooms.

The ‘Search for the Familiar’

Part of what drives wanderers, as with my dad, is the search for the familiar. Dad spent his last years looking to go “home,” but after a year of questioning, I realized that the home he sought no longer existed. It was a little house in dusty Inverell, Australia, where he’d spent his early childhood. His parents were long dead.

I greeted my visitors warmly and asked about their homes. Most spoke of their family houses. One man talked about a fishing cabin.

Fort Collins is mostly a farming community, so there’s a farm room in the Clare Bridge, though all the potentially dangerous farming tools are mounted on the walls high out of reach. There are also chickens living in the courtyard. The residents can feed them and clearly have: The chickens are all fat.

The residents can also have their own pets and many have dogs and cats. One woman likes to croon When Irish Eyes Are Smiling to her little terrier, Paddy.

Music and Memories

Indeed, the community is surprisingly musical. In addition to the televisions, there’s a Music & Memory room, where each resident has an iPod stocked with his or her favorite tunes. And there are often common rooms playing golden oldies where residents will stop and sway and hum.

And they play music themselves. At most Crossings meals, one or two women — two-thirds of those living with the diseases are women — will start tapping their feet or their cutlery to a beat. Soon, the whole room will be tapping along, all humming some unknown song.

Life Goes On

And that was perhaps my biggest surprise living in a dementia community: It’s not depressing. Yes, these people are losing their memories. But they also support each other and still have meaningful relationships.

During book club one day, they were reading Chicken Soup for the Golden Soul. One story talked about how wrinkles are as beautiful as freckles — perhaps more so, since they come with a lifetime of stories and experience. This led one woman to tell her personal story; every Saturday as a child, she went to her grandmother’s to brush her long silver hair.

“That’s a lovely memory,” one of her friends told her. “A lot of the memories that we share here aren’t big memories. They’re small, and they take your heart.”

Like these residents, my father’s life didn’t end with Alzheimer’s. It changed, yes. It was perhaps more lukewarm, but it was no less meaningful.

As first published in Next Avenue.

 

The Unique Challenges for Younger Caregivers

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Photo caption: The author with her mother.

By Stephanie Kanowitz

“This must be your grandmother.” I get that a lot. My mom was 42 when she had me, and although she avoided wrinkles until late in life and colored her gray hair a medium ash brown, she always seemed a little old for her age.

Now that my mom lives in the memory care unit of an assisted living facility, sits in a wheelchair and wears her hair white, our 42-year age gap is even more pronounced. Most people at the facility – residents and workers alike – are amazed when I say, “Actually, I’m her daughter.”

It’s never really bothered me that people think my mom is my grandma, but lately I find it adds to the isolation that comes from caring for a parent with dementia. At 39, I’m at least a decade younger than the other residents’ loved ones. Most of them barely give me a passing glance, likely assuming I’m a dutiful granddaughter, not a devoted daughter. Or it could be that they want to focus solely on visiting their loved one and getting the heck out. After all, the unit can be a depressing place.

I get that. Which is why I was hoping to find more of a community among other residents’ family members. I’m an only child, and my dad died when I was 14. My mom’s sister and half-brother have also passed away. I’m all she has and every decision falls to me. None of my friends are dealing with parents who have dementia, and although they and my family are an amazing support group, there’s something to be said for commiserating with someone who’s in the same boat as you.

Before my mom was diagnosed with dementia about five years ago – weeks after my son was born – I didn’t know much about the disease other than it made people forgetful. I didn’t understand that it also made them confused, belligerent, illogical and unreasonable. My mom was descending into her own world, a place where time froze in 2012. Anything after that didn’t stick with her.

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Photo caption: The author’s son and mother.

My coping mechanism was anger. I would yell at her for spelling my son’s name wrong or asking me the same questions over and over again. Then she stopped mentioning what Netflix movies she was watching, and I discovered she hadn’t been paying the bill – or any bill. I couldn’t reach her one day because her phone had been turned off. My husband and I took control of her finances. Fiercely independent, she was furious with us, until she forgot that we had done it. I didn’t know it then, but those were the easy times.

I spent several years feeling resentful. After all, how dare she develop dementia when I had two small children to care for, a freelance job to cultivate, my own life to lead? Throughout my teen years, my mom said that she never wanted to be a burden on me. But it felt like that’s exactly what she was doing.

Of course, my logical brain knew she wasn’t doing it on purpose and that I was being ridiculous. But my emotional brain was stronger.

All of this is to say – again — that dementia is isolating, not just to the patients who can get trapped in their own world, but to the caregivers who try to navigate that world. In fact, it can be harder on caregivers than patients, because even though sufferers have dark moments, they soon forget them. Caregivers don’t.

I remember every detail, like how her face twists in anger as she yells threats and obscenities at the facility’s staff trying to give her a bed bath because she can’t shower unassisted anymore – not that she knows this. To her, getting clean is a violation and it’s a fresh one every time.

A year after moving my mom into the memory care unit, I have come to realize that I was hoping a byproduct of putting her there would be gaining a community of understanding for me. I’d finally be around people who get it, who live it.

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Photo caption: The author with her daughter and mother.

I didn’t find it in fellow caregivers, but I found it in the care managers who work in the unit. They get it, live it and, what’s more, are trained to deal with it – to not feel resentment or take things personally. I have learned so much by watching and talking with them. For instance, there’s the time I walked in to hear my mom discussing ideas for Hanukkah gifts for her mother with a care manager.

“How about pearls?” the care manager asked her.

“Oh, maybe pearl earrings to go with the pearl necklace I gave her,” Mom said. Seeing me walk in, she added, “Do you see her wear those pearls, though?”

I froze, internally battling back the words that sprang to mind: “I’ve never met your mom, Mom. She died long before I was born.”

Something about the way the care manager looked at me helped me push that away, though, and instead I said, “Yes, Mom. She wears them all the time. I think she would love matching earrings.”

In that instant, I learned to go with the flow and in so doing, I am able to join my mom in her world, not resent her for having it.

I’ve also learned from care managers that feeling guilty, angry and resentment is OK. I visit my mom every day, but sometimes it feels like too much. Sometimes it’s just too hard to see her like this or to see the other residents and know that they once were heads of businesses and households, not just men and women in their 80s and 90s reduced to mental children looking for their parents and a way home. As I fretted one day about not being able to make it to the care facility the next day, a care manager stopped me and said, “She’s OK here. We look out for her, and you need to make sure you look out for yourself, too. If you need a day off, don’t beat yourself up about it. Your mom will be fine. We’ve got this.” It was so eye-opening that I hugged her. In five years, no one had told me that or shouldered the responsibility in quite that way.

In finding a place for my mom, I found one for me, too.

Whatever Your Opinion of Him, Trump Is Not ‘Demented’

As boomers age, we’re more sensitive to the language used to describe us

By Jay Newton-Small and Patrick J. Doyle

On Tuesday night, after President Donald Trump’s rally in Phoenix, Maria Cardona, a Democratic strategist, was speculating about Trump’s erratic behavior: “I do think that after tonight, people won’t just think that he’s unfit to hold this office, but that he might be psychotically demented and ill of the mind.”

And just like that, millions of Americans living with Alzheimer’s disease and related dementias cringed. Setting aside the thorny question of if the president has some sort of cognitive impairment, using the word “demented” to describe such a diagnosis today causes a furor because for the one in five Americans either living with, or who have a loved one who has, the disease, it fails to account for the human behind the description.

As the boomers (the generation that invented the idea of political correctness) hit their mid-50s, 60s and beyond, they are redefining the language that describes the very process of aging. American society is firmly entrenched in the cult of youth, so most words to describe aging are derogatory. But as the boomers age, more and more words are becoming taboo or sensitive, sometimes for the good and sometimes for the bad.

Here’s a look at five such categories of words or phrases:

1. Old, Senior, Elderly → Elder → Older Adult

Unfortunately, there are virtually no words that are acceptable any more to describe older people. Old, senior and elderly are often used to describe persons over the age of 65, but let’s be honest, who really likes being called old, senior or elderly — even when the terms apply?

Folks do not want to be associated with the negative stereotypes attached to these terms — sick, frail, dependent. Some senior living companies have gone so far to advertise now simply as “community living,” detaching from all age-association in their names. If one must find a word to describe older Americans, elder is preferred because it connotes wisdom and has fewer negative associations than senior. But even that term is controversial: some people complain that makes them sound like tribal or religious leaders (think church “elders”), rather than simply what they are: older adults.

2. Retirees → Successful Aging/Active Adult → Engaged

Some older adults take offense at the term “retirement” when in the wake of the economic downturn, many are still working and are far from retired. Others reject the label “retired” as furthering the stereotype of older people as dependent economic leeches. Even AARP has disassociated itself from its former title, the American Association of Retired Persons, to move away from the idea of retirement and to emphasize staying active in the workforce as long as possible. Many boomers have adopted the moniker of “successful aging” or “active adults,” but that remains controversial. What defines success? If you’re frail and not very physically active, are you failing at aging? Success implies a degree of education, wealth and health, making the term inherently biased against disadvantaged Americans.

Like the American dream, should we view successful retirement as aspirational? Especially when both the words “successful” and “aging” are fraught with divisive interpretations. As of late, “engagement” is being used to capture the diversity of experience and success as people age.

3. Caregiver → Care Partner → Ally

Historically, we’ve called nurses, aides, orderlies, family and friends who help with care “caregivers.” Sorry, Florence Nightingale, but that’s no longer a title to which you should aspire in modern times.

Caregiver implies a unidirectional relationship in which one person renders care on another. Sometimes, that’s an accurate representation of a relationship. But oftentimes, that’s not true: people who require some care often partner with others to navigate the support they require. So, some organizations have coined new terms like care partners to reflect these dyadic relationships.

The fact is that no single term accurately describes the breadth of the care spectrum. To reflect this reality, sometimes the term “care” is even dropped. So, someone providing support to a person living with dementia is referred to as an “ally.”

4. Demented → Patient with Dementia → Person Living with Dementia

Dementia is also a controversial word. Some clinicians will call those living with the disease “demented,” a term that will draw gasps of horror from certain circles looking to destigmatize the disease. Maria Cardona, for example, got an eyeful on Twitter after using that word.

Likewise, calling someone a “patient” who isn’t in a medical setting is considered dehumanizing. A person diagnosed with dementia lives with this condition for many years and only gradually loses cognitive abilities. These people continue to engage to the best of their ability — some write books, advocate on Capitol Hill and even go back to school to further their education. So, the most politically correct and accurate term these days is: person living with dementia.

5. Suffering from → Living with → Living Well

Writers often describe disease by saying people are “suffering from” something: “suffering from Alzheimer’s,” “suffering from Parkinson’s,” or “suffering from multiple sclerosis.” Yes, those diseases can cause suffering, particularly in the end stages. But many people can lead full, productive lives for years with these chronic conditions, and they aren’t necessarily “suffering.”

To soften this, experts often replace “suffering from” with “living with,” or the more aspirational, “living well with dementia.” However, as with “successful aging,” not everyone with dementia can “live well” with the condition. All do, however, live their life to their fullest capacity.

Trump is the first person to decry the evils of political correctness. But words have meaning, and he’d be the first person to take exception to some of the bombastic language — and unconfirmed medical diagnosing — being applied to him.

This is one case where “both sides,” to quote Trump, got it wrong.

Jay Newton-Small is a contributor to TIME and founder of MemoryWell, a company that harnesses journalism to tell the life stories of those living with Alzheimer’s and dementia with the aim of improving their care.
Patrick J. Doyle, PhD, corporate director of dementia care at Brightview Senior Living and principal faculty member in the Center for Innovative Care in Aging at Johns Hopkins School of Nursing.
Note: This piece was first published on PBS’s Next Avenue’s website: http://www.nextavenue.org/why-trump-not-demented/

How President Trump’s Budget Will Affect Seniors

By Emily Lock

President Donald Trump’s proposed 2017 budget envisions massive cuts to domestic services for his most loyal voting constituency: seniors.

Trump won the White House with the support of 53 percent of the senior vote. But, history shows, those who cut health benefits to older Americans tend to suffer at the polls in the next election. If the cuts are enacted, Trump risks alienating a large swath of his base.

Baby Boomers began turning 65 in 2011. Today, 3 million to 4 million Baby Boomers turn 65 every year; at that age two-thirds of the entire generation likely have one or more chronic diseases. Trump’s budget ignores that the U.S. population is increasingly made up of older persons, many of whom have low income and poor health.

Of course, the budget still has to make it through Congress.

What’s in Trump’s budget for seniors?

Even though Medicare and Social Security are exempt from Trump’s 2 percent cuts in domestic spending, the across the board slashing affects a host of other senior services, including Medicaid, the Supplemental Security Income program, the State Health Insurance Assistance Program, the Senior Community Service Employment Program and the National Institute on Aging.

Medicaid’s budget would be reduced by a whopping $610 billion over 10 years. Such drastic decreases in funding would mean lower government subsidies for medical providers and would risk forcing many of those providers out of the program. Alternatively, the program could have to cut services or cover less people.

The Supplemental Security Income program (SSI) provides cash income to seniors and American living with disabilities. In 2015, about 8.3 million Americans received SSI. Almost 2.2 million of those recipients were 65 years old or older. Trump repeatedly promised throughout his campaign that he would not cut Social Security; his administration has defended these cuts, saying too many Americans qualified for the program who didn’t need it. Trump spokespeople have insisted that SSI is a less important Social Security benefit. “Do you really think that Social Security disability insurance in part of what people think of when they think of Social Security? I don’t think so,” Mick Mulvaney, White House budget director, said on CBS’s Face the Nation,

Trump’s budget envisions defunding the State Health Insurance Assistance Program entirely, which helps seniors to understand and decipher Medicare. Furthermore, he proposes to eliminate the Senior Community Service Employment Program entirely. That program helps older adults get jobs, specifically with non-profit organizations or local governments. Lastly, the National Institute on Aging’s budget would be cut by more than 20 percent.

What’s likely to happen?

Trump’s budget is unlikely to pass Congress as is, but House Republicans envision similar cuts and Senate Democrats have only limited power to block such sweeping changes. House Republicans on Tuesday unveiled their own budget with a slightly different agenda. The GOP intends to limit the benefits that Medicaid offers to wealthier seniors, as well as imposing work requirements on Medicaid recipients who are able to work, according to CNBC. The House proposed limiting Social Security spending by ending payments to Americans who also collect unemployment insurance benefits.

Of course, if nothing is done, seniors still have to contend with the lingering effects of the sequester, across the board cuts enacted in 2013. “If [Democrats and Republicans in Congress] get to the end of the year and haven’t agreed on anything,” said Howard Gleckmann, journalist and author of Caring for Our Parents, “an automatic, across-the-board cut to all federal spending, that would happen in 2018 and that would result in significant cuts to senior service programs.”

As senior groups increasingly sound the alarm on the GOP budget cuts, Democrats see an opening. Republicans, after all, control both chambers of Congress and the White House. Dems have begun to aggressively court the senior vote. “We are talking about half the births in the United States, 30 million children, and half of all nursing home and long-term care nationwide for senior citizens and people with disabilities,” said Representative Jan Schakowsky, an Illinois Democrat, said in defense of Medicaid.

Becoming Your Parent’s Parent in Your 20’s

By Lissy Melia

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Lissy and her father, Hal Beaver, at a performance

Dad fell asleep at a red light, rolled right across the intersection and into a parked car. That was the sign it was time to move him to an independent living community. I was 22 years old. My siblings were 24, 23 and 20. We were young for this kind of thing.

We submitted applications for a subsidized bed at a senior facility close to town. It had a kitchenette, living room and a little TV on top of the drawers. We placed his mother’s North Carolina antique quilts on his new bed, his Army Ranger sleeping bag from the 50’s all rolled out on top and freshly framed pictures of his family to help him feel at home.

His new place was a step up from the elderly woman’s basement in the suburbs where he had been renting a room. It got ugly there when Dad, ever the Army Ranger, threatened to discipline her disrespectful teenage grandson, laying out and polishing all of his shotguns for added intimidation. Yes, this new apartment with men and women his own age, in his income bracket, and closer to his children would be a welcome change for all of us.

Dad started going on group shopping trips with his new neighbors and taking the occasional senior computer class. I still have an adorable band poster he made and posted all over his building for a bluegrass show I would be performing in Atlanta. It’s an old Word Art stock image of a woman playing the saxophone on bright orange paper. And I will always treasure the only email I ever received from my old man, as he forged new technological paths with his senior peers. But while he stayed active and kept learning, a fog was rolling in. Walking became more and more difficult, and soon he settled into his tattered armchair, where he watched late night infomercials and ordered products he shouldn’t off home shopping networks.

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Hal as a kid.

His behavior became erratic. One evening, in a burst of empathy, he invited a random blind man he met at a bible study to spend the night worried he didn’t have a home. Hours later he kicked him out for taking up too much space. He could be found wobbling to the nearest bar mid afternoon and ordering elaborate meals for himself and friends only to then call me up in graduate school asking for my credit card number to pay for it over the phone. Once, an old friend rang to tell me she’d seen my dad sitting on the sidewalk of Peachtree Road taking his shoes off and rubbing his feet. This was around the time the local music store became accustomed to driving him back to his assisted living facility after he’d wandered off feeling stronger than he was.

When he left the stove on in his kitchenette, it became clear we would have to devise a plan to keep our headstrong military man more on track. He was becoming a liability to himself and the others in the building, but we needed this living arrangement to work out for him. The four children huddled and hatched a plan. We determined to make sure he was taking his prescriptions to fight the dementia, avert the mood swings and keep his heart healthy.

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Harry Beaver Senior (Navy) and son Hal Beaver (Army).

We took shifts: Howell would call in the early morning from college in Texas; Corrie in the mid-morning; myself in the early afternoon; and Hannah in the evening. The one goal was to make sure he took his required pills before we got off the phone. But these calls quickly turned into an elaborate tug of war with our lonely but clever father. He kept us on the phone by withholding information as to whether or not he had actually taken his pills for as long as he could. Dad never did like to say goodbye to his kids and negative attention was better than no attention. We began to lose steam.

One afternoon up in DC, I received an urgent call from my uncle concerned about a bowl of pills Dad was fingering through. Maybe he’d pick out the blue one, maybe the red- but “goddammit I have a system here!” he’d shout. All of our phone calls were in vain. He had poured everything into one bowl and throughout the day would take what he thought was on the docket.

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Hal Beaver, Football player at Georgia Tech.

 

As twenty somethings, unfamiliar with the demands of caring for our quickly aging father, we didn’t fight back. We didn’t know we were years behind the kind of care he needed. We were still his children. No one sits you down to notify you the moment the tables have turned and in fact you are now the caretaker. No one warns you about the moment you realize that dad won’t be getting better, that from that time on he will creep into elderly toddlerhood, then infancy. It wasn’t until he suffered a major fall and the hospital wouldn’t release him back to independent living that we realized the extent of his decline. No, we didn’t fight back: we were fighting to keep up.

My siblings and I were collectively anxious as we struggled to balance wrangling our dad with the demands of our own lives: exams, first dates, paying rent for the first time, moving to new cities and putting utilities in our own names. With little outside guidance and no big picture perspective we couldn’t see that our Dad was heading down a road of full-blown Alzheimer’s, that soon he wouldn’t stand again, that soon he wouldn’t know who we were. We were focused on overdoses and contraindications of mixed drugs, and was he making enough new friends, and could one of the sisters in town go stock his fridge with groceries, please. It was hard to know how to place his care, and we didn’t know that there were skilled nurses available if we would’ve only asked for more help and not been too intimidated by the price tags.

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Mel Jones, Hal Beaver, Alex Platt, Lissy Melia Fiddler’s Grove, Union Grove, 2007.

Of course, more than 15 years later, we now know none of those drugs we were so worried about him overdosing on worked anyways. To this day, there is no cure and no treatment for Alzheimer’s and just a few months ago the most promising trial on the horizon for Eli Lilly’s Solanezumab showed no statistical difference from the placebo, a devastating blow to the Alzheimer’s community. My Dad has since passed away after his own struggle of more than a decade with this disease. With his death behind me now I can look back and see that we were, through no one’s fault, always a few years behind.

I can see now that his Alzheimer’s was already full blown during the bowl of pills crisis, though this wouldn’t be technically confirmed for two more years. I can see now that he should not have been driving for years before he rolled through that red light. I can see now that he should have been in an assisted living facility when we had in at an independent living facility, and he should have been in a nursing home when we had him in the assisted living. We were always a few years behind.

But that’s life. We do our best with what we have, and you just don’t know what you don’t know. There isn’t a handbook or outline handed out in life or an alert to notify you of that moment when the roles reverse themselves, and the person who took care of you needs you to take care of them—when you become your parent’s parent.

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Hal Beaver and Lissy Melia in 2007.

Why I locked my father away

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I thought I could care for my dad after his Alzheimer’s diagnosis. Like many caregivers, I was quickly overwhelmed

It was a nice dream. My boyfriend was spooning me, nuzzling my neck. His hand crept up under the covers, reaching under my pajama top to cup my breast. Until, abruptly, I realized: This wasn’t my boyfriend, it was my father.

“Dad!” I yelled, leaping out of the bed. “Man, I’m going to need so much therapy.”

My father only looked at me, puzzled. It wasn’t his fault. My mother had died the month before and his Alzheimer’s-addled brain had him convinced that I was her. She’d only made him sleep alone when they were fighting, so he didn’t understand why I insisted on sleeping in separate rooms. To him, it meant he was in the doghouse for some unfathomable reason.

“I’m sorry,” he said, his eyes filling with tears.

I’d let him sleep with me this once because he otherwise had refused to lie down. He’d hardly slept in the month since her death. I was worried he’d collapse from exhaustion. But, apparently, exhaustion hadn’t been on his mind this night.

Exhaustion was certainly on my mind. My father was what they called a wanderer. I lived in terror that he’d get out of the house and walk into traffic. I felt like a new parent of a very large adult toddler; I had to watch him constantly. I wanted nothing more than to keep him with me but I was rapidly realizing that I couldn’t handle him. I’d go shopping and come home to a house full of gas — Dad had tried to cook but was used to an electric stove. The week before he walked my dog, as he had for years, and turned an around the block spin into a multi-hour silver alert ordeal. Fire and police finally found them both dehydrated four miles away.

I’d resisted for years my mother’s attempts to put my father in a home. I was convinced he was better off at home with us. Old folks’ homes were, in my mind, where people went to die. Despite these reservations, I decided it was time to start visiting some communities.

I researched the best places in Washington, D.C., and decided if I was going to have an awful time doing it, I would limit the pain to one day. So I stacked 13 visits on top of one another, packed dad and my dog into my car and off we went.

There aren’t words to describe how terrible that day was. It started with dad refusing to get out of the car at the first home. When he finally did, he just shook his head the whole time, as if denying what his eyes were telling him would make it all go away.

By the 13th home, I was a mess. The staff took pity on me and took my dad and the dog for a walk without me as I sobbed my heart out.

pics of dad and me at Copper Ridge

It wasn’t that the places were that bad. Some of them were beautiful. Manicured gardens, trips to the Smithsonian and spring group vacations to Europe. Lectures by Pulitzer Prize winners. Heck, I wanted to live in some of those places.

But others were dreadful. Especially the “memory units” — a nice name for the locked sections that house wanderers like my dad. Or, as he called it, jail. Most of these units featured drooling people parked in front of blaring televisions. Placing my father in almost any of these environments seemed cruel.

We went home and ordered pizza for dinner. Over a glass of wine, I asked my dad which he’d liked the best, not really expecting a cogent answer from him.

“The second to last,” he said.

“Really? That was my favorite as well.”

He nodded his head grimly. “If you have to do it, the second to last is best.”

That moment was such a gift to me — he was rarely as clear as that over the five years he lived after that. He’d granted me his permission to put him in a home.

Of course, he didn’t remember that two days later, when my sweet wouldn’t-hurt-a-fly father slapped me across the face and screamed that I was imprisoning him as orderlies dragged him away.

Despite the last-minute upheaval, I was lucky. My father’s United Nations pension enabled me to secure great care for him. If I hadn’t had that, I would have had to quit my job to care for him myself, a stark choice an increasing number of Americans are forced to make. There are 11 million people living with dementia — 5.4 million of them with Alzheimer’s — in the U.S. today, a number that will more than triple by 2030 as the Baby Boomer generation ages. Given recent drug-trial failures, we aren’t likely to see a cure in time to help that generation.

Of the top 10 diseases afflicting Americans today, nine are declining. Only one is spiking: dementia. Dementia alone will break the backs of Medicare and Medicaid — it’s projected to account for more than 70 percent of all costs by 2028.

Homes don’t have to be like the sadder places I visited, residents acting like drooling zombies parked in front of televisions. As the need for care spikes, America needs to find non-pharmacological ways to improve the lives of those living with Alzheimer’s and dementia, and the jobs of those caring for them. Currently, more than 95 percent of research goes into drugs. No attention is being paid to care. America is short 1.3 million caregivers and will be short nearly 2 million by 2020. Residential facilities experience on average a 55 percent annual staff turnover, which leads to disjointed care. We need more money devoted to looking for better caregiving solutions for the millions of lives those drugs will likely come too late to save.

I created MemoryWell, a national network of more than 350 journalists writing the life stories of those living with Alzheimer’s and dementia, because I felt like I had to reinvent the wheel to improve his care and I hoped to save people the same arduous path. But there are too few startups and solutions like MemoryWell out there. More needs to be done.

As originally published in Salon.com.

My Mother’s Quiet Burden Was My Father’s Fading Mind

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As originally published on Slate.com.

By Jay Newton-Small

“Jenny, I really need you to be there for that furniture delivery,” my mother said.

If there was an extra strain in my mother’s voice, I didn’t hear it over my irritation at being called “Jenny.” Everyone on the planet had called me Jay since my father had given me the nickname at birth. My mother alone insisted her own short version of my given name, Jennifer.

The last thing I had time to do was spend half a workday waiting for a furniture delivery. I was a Washington correspondent for Time magazine. It was the spring of 2011, and I was sure that President Obama and House Speaker John Boehner were meeting in secret to negotiate a grand bargain—I just had to find the sourcing to prove it.

My parents, meanwhile, had just bought an apartment in Washington to be closer to me, so I could help with my father’s care. My mother claimed he was getting too hard for her to handle on her own, though I never saw it. Whenever I visited them in Florida, he was always setting the table, doing the laundry. He seemed fine, despite the fact that he was 10 years into an Alzheimer’s diagnosis.

I grudgingly agreed to take the furniture delivery and hung up. It was the last time I’d speak to her. Two days later, she dropped dead of a brain aneurysm, in the middle of hosting a dinner party for 14 at their home. It was the way she would have wanted to have gone: the consummate hostess, making her guests comfortable. And the surgeons said it was the death any of them would choose if they could: painless and too quick for fear.

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