The Unique Challenges for Younger Caregivers


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.


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.


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:

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

lissy and her dad1
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.

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.

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.

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.

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.

Hal Beaver and Lissy Melia in 2007.

Why I locked my father away

dad and me copy

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

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

mom and me4

As originally published on

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.

Continue reading “My Mother’s Quiet Burden Was My Father’s Fading Mind”