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Dementia LIVE®: Caregivers Experience Dementia in Real Time

September 8, 2020

Presbyterian SeniorCare Network
September 2020

Dementia LIVE®: Caregivers Experience, Dementia in Real Time

Imagine that you’ve been given seven

minutes to accomplish a verbal list of

five tasks. Sounds easy, doesn’t it? You

must find the white sneaker and tie the

shoelaces. Then you must find your change

purse and count out $.57. Now locate your

checkbook and sign your name on a check.

Now hang up the red blouse and move it to

the rod. No, that’s the pink blouse—where’s

the red one? Got it. Now… wait, what was

the fifth task? Oh, yes—water the small

plant. Oops—time’s up.

 

IS STAYING AT HOME A SAFE OPTION

FOR YOUR PARENTS?

If you’re wondering why those five easy tasks

could hardly be accomplished in seven minutes,

it’s because you were wearing headphones that

played a range of muffled sirens, train whistles and

crowd sounds that made it hard to concentrate. Add

to that a pair of blackout glasses that narrowed your

field of vision and thick cotton gloves that made it

hard to feel and manipulate items.

You’ve just gotten a glimpse into daily life for a

person living with moderate to late-stage dementia.

That’s the idea behind Dementia LIVE®, a

dementia simulation program that’s helping

caregivers get inside the minds of the people they’re

caring for, resulting in a deeper understanding of

what it’s like to live with moderate- to late-stage

cognitive impairment and sensory changes. The

headphones simulate the inability to process and

discern important sounds from background noise;

the glasses simulate vision impairment from agerelated

eye problems; and the gloves simulate the

loss of touch sensation and fine motor skills that are

common with aging.

 

Presbyterian SeniorCare Network uses Dementia

LIVE training for all direct caregivers throughout

the network so they can use their personal

experience and apply it to their relationships with

residents living with dementia.

 

Because dementia is so individualized, I

have to respond in the right way for the

person I’m interacting with—and the

key to doing that is getting to know that

resident personally.

-Bridgette Siciliano

 

 

For Kelly Frame, lifestyle engagement associate

at Woodside Place, and Bridgette Siciliano,

administrator of personal care at Woodside Place

and Adult Day Services, both at our Manchester

Commons community in Erie, the Dementia LIVE

experience was a real wake-up call. “I was surprised

that people would have to live like that all the time,”

Kelly says. “It makes you understand how having all

that stimuli could be overwhelming for someone.”

“I found the experience aggravating—it created so

much anxiety,” says Bridgette. “I didn’t expect so

much noise—it was hard to focus. The experience

has given me a better understanding of the residents

and what they’re going through.”

 

The goal of the Dementia LIVE experience is to

help each caregiver become the most compassionate

caregiver they can be through a deeper

understanding of dementia. “Dementia LIVE made

me realize that every person’s dementia is unique to

them and the right way to help one person might not

work for another person,” adds Bridgette.

Being person-centered is at the heart of everything

we do at Presbyterian SeniorCare Network, and

Dementia LIVE is just one more way we train

our caregivers to be their best. “I feel that we,

as caregivers, have to constantly evolve and be

flexible with our residents because their dementia is

changing them,” says Jill McMurdy, RN, Woodside

Place neighborhood manager at the Network’s

Oakwood Heights community in Oil City. “We have

to meet each resident where they are and live in the

moment with them. A resident might not remember

my name, but they know my face, my smile—they

can feel my compassion and know that I’m here

for them.”

 

DEMENTIA LIVE®: FROM A COACH’S PERSPECTIVE

In the year that Presbyterian SeniorCare Network

has been using Dementia LIVE® training, our

dementia care coordinators and certified dementia

practitioners (CDPs) have embraced this immersive

technology, successfully training 549 employees

across the organization. In 2020, all team members,

regardless of their role, will receive Dementia

LIVE training as part of their new-hire

orientation, exemplifying the value of the training

in our communities.

Beth O’Brien, social services director at our

Oakwood Heights community in Oil City, recently

was named a Dementia LIVE coach of the quarter

by AGEucate, the company that markets Dementia

LIVE. She is both a CDP and a Dementia LIVE

training coach. According to Carrie Chiusano,

executive director of the Presbyterian SeniorCare

Network Dementia Care Center of Excellence, Beth

was singled out for the award because of her excellent

communication skills.

“Beth takes the time to truly listen to others. She

hears their messages, observes nonverbal cues and

adapts the mood to make sure everyone is

at ease,” says Carrie. “Beth doesn’t just take the time

during Dementia LIVE trainings. She is present

in the neighborhood for real day-to-day teachings.

She’s there, right in the moment, sharing her

knowledge every chance she gets.”

The most powerful part of training for Beth is what

she calls the “aha moment”—the point of realization

that hits someone and reveals what it must be

like for a person living with dementia. “That aha

moment gives them firsthand experience and will

change the way they interact with our residents,”

says Beth, “The empowerment session at the end of

the experience also is very rewarding. It allows me

to debrief the group and use real-life experiences to

teach how we should be approaching and working

with people living with dementia.”

How to Get Rid of Stuff: The Survey Says…

August 18, 2020

Fascinating findings from studies by the author of 'Downsizing
By Richard Eisenberg

Ever since I wrote the viral 2017 Next Avenue post, “Sorry, Nobody Wants Your Parents’ Stuff,” I’ve been a little obsessed with Americans’ love/hate relationship with their possessions and downsizing. So, I was fascinated to read University of Kansas sociology and gerontology professor David J. Ekerdt’s new book, Downsizing: Confronting Our Possessions in Later Life, and to have a chance to interview him about it.

Ekerdt has actually conducted exhaustive interviews with Americans over 50 about their experiences shedding their stuff.

In 2002-2003, he and his researchers spoke with 38 people age 60 and older who’d moved in the previous year within, or to, the region around Lawrence, Kansas, and Kansas City, Mo. They also interviewed 98 people 60+ in the area around Detroit, between 2008 and 2013. And in 2010, they put questions about relocation and possessions into the mammoth University of Michigan Health and Retirement Study (HRS), surveying 1,814 Americans age 50 and older.

61% Over 60 Say They Have Too Much Stuff

One of the most revealing findings from the HRS questionnaire: 61% of people in their 60s said they felt they had more things than they needed. As Ekerdt writes in Downsizing, older Americans have a “predicament with possessions.”

“People talked about waking up in the morning and making more lists and their sleep being disrupted as the deadline was bearing down on them.”

“I don’t want to scold people,” he told me. “I think it’s a given that people accumulate things for all sorts of reasons. It’s more convenient to do nothing [about that] than it is to do something.

Here’s the rest of my interview with the king of “stuff” research:

Next Avenue: How and why did you become so interested in the subject of downsizing and possessions?

David J. Ekerdt: I have been studying over my career how people make transitions in later life and everything it entailed, but also the way people get ready for the future. Thinking of the residential relocation question, that will almost always entail people moving to smaller houses, which means they have to reduce by perhaps half or more the quantity of the possessions they have. And the further forward you go in life, the more difficult this might become.

So, we sought funding from NIH [National Institutes of Health) to learn how people went about doing this exactly and what we could learn to help inform people.

What surprised you from your surveys?

People often described downsizing as being hard work and drudgery.

And it’s quite complicated; it’s a cognitive task you have to think through, with endless details. You have to make lists. People talked about waking up in the morning and making more lists and their sleep being disrupted as the deadline was bearing down on them. That’s how stress tends to express itself.

And it’s emotional: you have to stop and consider whether you will still want to have things and protect them, or try to place them with relatives. So, it’s a social task.

Relief After Downsizing

And how did people say they felt after they downsized?

They had relief. Their accomplishment was a form of empowerment.

You say that some people use the ‘magical thinking’ approach to downsizing. What do you mean?

This is when people are funny. One person said: ‘I just wished at one point there could be a fire to take care of all of these things.’

You said you found a lot of ‘divestment inertia.’ What do you mean by that?

It’s typical for people to do less and less about their possessions as they move into their seventies, eighties and nineties. About half of people in their seventies have difficulty stooping and crouching and kneeling. By the time they’re eighty, almost two-thirds do. Imagine cleaning out a house without stooping, crouching and kneeling. And over half of people who are eighty have difficulty lifting and carrying something as heavy as ten pounds. So the inertia is not surprising.

What do you think were the most important and interesting findings from the surveys you conducted?

I think I’d go right to one of the major things: There is a sequence of strategies people use once they embark on downsizing and have to decide what they will keep.

First, they think of giving things away that people might want. Then they think of selling things they couldn’t give away. And then donating things. And finally, discarding.

If you need to move, we found the most common length of time for this downsizing is about six weeks to two months. In that period of time, the work you have to do to give things away and sell them is not going to move much material out of the house unless you turn the selling over to someone like an estate seller.

Yard Sales: A Lot of Work

How did selling items, yard sales and estate sales work out for the downsizers?

About a quarter of the people did what I call opportunity selling. That’s like when a neighbor hears you’re moving and buys your lawn mower.

Half of the people tried more engagement — with yard sales or church sales. Everyone will tell you that a yard sale is a lot of work.

Some went with delegated sales where an auctioneer or an auction house takes everything away and removes your identity from everything.

“They also said it wasn’t about the money. It was ‘We got rid of it.’ That word ‘rid’ is always mentioned.”

Some tried estate sales and they were pleased sometimes. But you have to understand the ground rules. The seller might mix your possessions in with others. Or the people found the estate sales person would hold the sale in the middle of the week, rather than on a Saturday or a Sunday when the people downsizing thought would get more traffic.

Do people get much money when they sell their things?

The first person we interviewed sold everything for twenty-eight thousand dollars and she even made her own granddaughter, who was interested in the grandfather clock, come to the sale. But most people don’t realize that much money.

Were they disappointed about that?

Mostly they said ‘It was nice that we got something, but it wasn’t that much.’ They also said it wasn’t about the money. It was ‘We got rid of it.’ That word ‘rid’ is always mentioned.

One of the problems with selling things is that people have almost no idea of the prices people will pay for them and they are continually disappointed by the prices they get. TV shows like “Antiques Roadshow” are tempting to believe in.

The Good Feeling From Donating Stuff

What about donations?

People we surveyed tried to make batch donations at large agencies like Goodwill or Salvation Army. But they also tried to place things with perhaps a woman’s shelter for their linens and bedding and utensils. When they were done donating to the shelter, they felt good about having done that.

Some of the charities are closed to things they will accept. Some offer to pick things up at your house, but you have to be specific about what they’re picking up. You can’t unload the attic on them.

Some people in our studies found that charities would not pick up in their neighborhood.

Why do people compress their downsizing into a short period of time? And what’s their advice to others?

When we asked people in our study for their advice to others, they all said: Don’t wait. Start early. Do it while you still can. I would second that.

They also said: Get help and pay for it if you have to. If you don’t, you will be in for months of pretty hard work. It will be pretty laborious.

When to Start Getting Rid of Your Possessions

Does it ever make sense to delay your downsizing of your possessions?

There’s a good reason to wait until you know what your destination is because until then you don’t know what’s going to fit and what you’re going to need.

If you will have a yard, you will want to retain your gardening supplies and your lawnmower. But if not, then all that material can be released. If you won’t have much space and you now have bookshelves, you’ll have to downsize your books.

Do people delay the downsizing because they’re sentimental about their possessions?

That would be another reason to hold back. There are two main reasons we have something: either it’s useful or it symbolizes something. Your mother’s cookbook might be less useful than your potato peeler, but it symbolizes your mother.

To release these symbolic things, it’s a confrontation with yourself: What kind of person am I going to be in the future?

A number of the women we talked to said that when they moved, they brought service for four or six plates. That was them measuring the size of what their hospitality would be in the future.

Our Stuff, Our Selves

How did downsizing, or a failure to downsize, relate to identity?

Possessions are an extension of ourselves. In the book, there’s a woman in her basement going through boxes, finding trophies her children earned in grade school. Being a mother was in those things. And that’s why it takes a great amount of courage to surrender these things and decide you’re going to move forward.

You also found what you called a strong form of ‘intentional placement’  for unloading possessions, which you called a ‘safe passage.’ What is that?

Safe passage goes back to olden days when there were bandits in the countryside and someone would accompany you from one border to another. With downsizing, people are intentionally trying to give their possessions a safe passage into the future to people who would value them and use them and respect them as they did.

You write that downsizing is often easier for affluent people than for poorer people. Why?

Affluent people have resources to obtain help to hire people to help them move and sell things.

And people of modest means may not have as much discretion about when they will move. One of the strategies some people use when moving is they move first and then settle things back at the house they left after the move. If you have a modest income, you might not be able to pay two mortgages or rents or a double set of utilities for months. When a slot is open for an apartment, you’ve got to do it now.

The Pandemic and Downsizing

How is the pandemic affecting downsizing?

I was talking to a senior move manager who helps people do it and she said people are still moving, but it’s harder to do face-to-face transactions.

In your study, did you find the adult kids wanted their parents’ possessions?

One thing we were hearing was: ‘We offered things to our kids and they didn’t want much of anything.’ This is a staple of popular media. It’s kind of unflattering to both generations; that the younger people are selfish and the older people are tone deaf.

There are good reasons for refusing parents’ possessions. They can be out of style or worn out. And the children are visitors now, so they’re less familiar with what their parents’ things mean.

Also, it puts an obligation on your children to archive things, so you won’t come over and say: ‘Where are those teacups I gave you? I don’t see them out there.’

Anyone who is moving in their seventies or eighties — their adult children have households that are fully stocked and they might not need anything else.

Advice for Adult Children

What is your advice to the adult children whose parents do want them to take things?

Take them — and take some more. Because the true gift is the receiving of things.

Be glad your parents are letting go of things and do them a favor of accepting their books or tools or a piece of furniture if you can, instead of saying: ‘That’s not my taste.’ Affirm the giver with open arms.

By Richard Eisenberg

Richard Eisenberg is the Senior Web Editor of the Money & Security and Work & Purpose channels of Next Avenue and Managing Editor for the site. He is the author of How to Avoid a Mid-Life Financial Crisis and has been a personal finance editor at Money, Yahoo, Good Housekeeping, and CBS MoneyWatch. Follow him on Twitter.

Presbyterian SeniorCare Network Hires New Chief Financial Officer

August 11, 2020

PRESBYTERIAN SENIORCARE NETWORK HIRES NEW CHIEF FINANCIAL OFFICER

Todd R. Boslau

On July 30, 2020, in Oakmont, PA,  Presbyterian SeniorCare Network President and CEO, Paul Winkler, announced the hiring of a new Chief Financial Officer after completing a thorough four-month national search process.


“We are thrilled to share that a local and well-known colleague, Todd R. Boslau, CPA, will be joining our team early in September to serve in this mission-critical leadership role,” said Winkler. “Todd is well known and highly respected within the non-profit, senior services network, and has a reputation as a strong collaborator and great mentor.”


Winkler shared that the organization’s search committee received resumes from more than 30 qualified candidates, completed interviews with approximately a half dozen of the applicants and narrowed the field to a select few, who completed additional interview rounds.


According to Winkler, it was providential that Mr. Boslau emerged as the final choice through the national search process. Many of the Network’s finance and leadership team have known Todd for years as Audit Partner, with the firm Baker Tilly Virchow Krause, LLC. Winkler noted, “Todd has actually served as the partner-in-charge of the audits of Presbyterian SeniorCare and most of our affiliate entities for many years, and is already well-known to board members and leaders across our Network.”


For the past 25 years, Mr. Boslau has worked for accounting firms that are now part of Baker Tilly where he started his career after graduating from Grove City College with a degree in Accounting. His extensive experience includes as serving as the lead partner in charge of the firm’s Healthcare Practice, including the western PA senior living services practice since 2007 as well as their lead HUD housing expert. Additionally, he has served as a member of the CARF Financial Advisory Panel and a regular presenter at LeadingAge state conferences. CARF is an international, not-for-profit accreditation organization that promotes quality, value, and optimal outcomes by conducting surveys to assure that quality standards are being met. LeadingAge is the national association representing 6,000 not-for-profit organizations across the entire field of aging services.


Mr. Boslau, who also will serve as an officer of the organization, said, “I am looking forward to leveraging my 25 years working in public accounting including my last 13 years focused on healthcare and long term care organizations for the benefit of Presbyterian SeniorCare Network.”


Boslau and his wife, Adrienne, live in Hampton Township, along with their two sons, Lincoln, age 5, and Evan, age 3.

Todd R. Boslau will join Presbyterian SeniorCare Network as chief financial officer in September 2020.

The Ways the Pandemic Has Influenced Our Eating Habits

August 7, 2020

More cooking, more uncertainty, less exercise and less sleep have taken their toll
By Randi Mazzella

Last week, my husband and I decided since outdoor dining resumed in our state, we would go out to dinner. For the first time in several months, I decided to get dressed up. I noticed that all my “real” pants felt snug at the waist.

The pandemic and staying at home had changed my eating habits immensely. Over the past few months, dinner had become the focal point of our family’s day. I was cooking more elaborate meals. Indulging in more “happy hours” and baking banana bread on a weekly basis. I also found myself snacking more frequently throughout the day (especially after watching the news) and craving heartier fare like pasta and sandwiches, rather than my usual salads.

My experience is not uncommon. A recent survey by OnePoll on behalf of Nutrisystem found that 76% of respondents shared they’ve gained up to 16 pounds during their time in self-isolation (dubbed #Quarantine15).

Why the Weight Gain?

Health, wellness and weight loss expert Liz Josefsberg explains, “COVID-19 caused our entire lives to change in a week.”  Schools closed and parents were working from home. We were home cooking more meals and mindlessly snacking due to stress, boredom and anxiety.

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Josefsberg says, “Every healthy habit we had disappeared and with zero preparation. We developed new habits such as planning elaborate dinners, baking and drinking more alcohol to cope with the situation. Most of us were also moving substantially less, sitting at our home computer instead of walking to the train or around the office or running around with the kids.”

Author Beverly Willett, of Savannah, Ga., found herself turning to food for comfort for the first time in her life.

“I have tremendous willpower for lots of things, but suddenly, my willpower over eating seemed to disappear overnight.”

Willett says, “I live alone, and my social life abruptly ended. Church services went online. The gym shut down. Food was one of the few options available, so that’s where I turned. I was forced to deny myself everything else.”

Before the pandemic, Willett had never been an ice cream fanatic, but during the months at home, she started eating ice cream right from the pint container while watching television on the couch. She says, “I have tremendous willpower for lots of things, but suddenly my willpower over eating seemed to disappear overnight.”

Beyond eating more and moving less, changes in sleep patterns can also contribute to weight gain. Many people have found themselves with trouble sleeping due to anxiety, or sleeping more due to boredom. Willett used to be a morning person. But now the late-night TV binging has caused her to sleep schedule to be off and she no longer wakes up early to take a walk.

Christina Pierpaoli Parker, a clinical geriatric psychologist and sleep expert, says, “Research strongly links sleep with metabolic health, appetite and diet. When we are sleep deprived, our hormones are off, causing us to be hungrier. We are also awake more, with more time to eat, but we are tired and tend to exercise less.”

Why the Concern?

It’s easy to say: Who cares about gaining a few pounds when the world is in chaos? Don’t people have bigger concerns than to feel fat-shamed?

Josefsberg points out, “It’s a slippery slope because five pounds can lead to ten and this can lead to all types of issues. The way we take care of our bodies, what we eat and how much we move affects how we feel.”

According to the Centers for Disease Control (CDC), “People who have obesity, compared to those with a normal or healthy weight, are at increased risk for many serious diseases and health conditions, including high blood pressure, heart disease and diabetes.” Obesity also puts you at increased risk of severe illness from the coronavirus, the CDC says.

Even a small weight gain or change in eating habits can lower your quality of life.

Pierpaoli Parker explains, “Weight gain causes joint loading and systemic inflammation, which can make movement painful. If it hurts to move, you will move less. Being sedentary can lead to less social engagement, which will impact sleep and energy level (because of inactivity.)  All of this makes a person tired, bored and lonely — which can cause them to eat more and gain more weight.”

Willett, who has already had seven knee surgeries, worries that the extra pounds she has put on during the pandemic are adding stress to her joints. She says, “There’s no way with my current lifestyle or metabolism I can manage the weight I was in my forties. Weight is not about reaching a certain goal weight, a number, but rather how I feel. The weight is literally wearing me down and the physical and mental go hand-in-hand.”

4 Ways to Create New Healthy Habits

For most of the country, it doesn’t look like things will be going back to “normal” in the foreseeable future. So, if you have gotten into some bad habits over the past few months and want to make some lifestyle changes, here are four tips on how to get started:

  1. Examine your relationship with food. “Ask yourself: ‘What am I really feeding? Physical hunger or emotional hunger?'” says Pierpaoli Parker. If the latter, seek out other, non-food-based sources for what you need, such as reaching out to a friend or engaging in other valued, meaningful activities that give you the psychological and emotional nourishment you need.

Think about rewriting the narrative of your health story. For example, if you say to yourself, “I can’t eat cookies, because I am on a diet,” your story is one of deprivation. But if you say, “I’m excited to go to the farmers market” and “I’m lucky to have access to fresh berries,” eating nutritiously becomes a reward rather than a punishment.

Josefsberg says the key to maintaining a healthy weight is to make small, sustainable lifestyle changes. She explains, “Going on a diet or any restrictive eating program is a recipe for guilt, shame and failure. Instead, you want to restore balance in your life by making systematic, sustainable changes.”

For example, if you have been drinking alcohol several times a week, don’t say, “I am never drinking again.” Instead, consider cutting down a little at a time, so you are back to your pre-pandemic consumption of, say, enjoying a glass of wine once or twice a week.

If you tend to do a lot of emotional eating, consider eliminating or limiting the number of tempting options in your home. For example, if you find you can’t resist Oreos, don’t keep a box in your house. Pierpaoli Parker says, “Curbing mindless eating has more to do with making environmental modifications than engaging your ‘willpower” — a largely debunked myth in psychological science.”

  1. Think about adding more movement. As for fitness, again, re-write the narrative. Pierpaoli Parker says, “The word ‘exercise,’ at least for me, feels dirty and laborious, like I am punishing myself. I prefer the word ‘movement’ to ‘exercise’ because this seems like a much more palatable, less discouraging way of discussing it. And when you change the story you tell yourself, you can change how you feel and what you do about doing it.”

Pierpaoli Parker suggests setting what are called SMART goals for movement: Specific, Measurable, Achievable, Realistic and Timely.

Pick a specific movement such as bike riding or going on a walk after dinner. Make a concrete appointment with yourself to do this activity that you enjoy four or five days a week. Put it in your calendar so that you hold yourself accountable.

“The way we take care of our bodies, what we eat and how much we move affects how we feel.”

Pierpaoli Parker says, “Knowing exactly what, how, and when to do something increases the likelihood of actually doing it. It will also help to create healthy habits. Routines free us of cognitive resources and, over time, promote behavioral automaticity. With enough consistency, moving will start to feel like the norm.”

  1. Examine your sleep habits. Pierpaoli Parker explains, “We behave more impulsively with insufficient sleep. That means when the integrity of this connection gets compromised after a poor night’s sleep, obesogenic cues (e.g., that chocolate bar taunting you at the grocery checkout line) may feel more salient and difficult to resist.”

Also, fatigue messes with motivation, hijacking the ability to engage in health behaviors such as meal preparation or exercise. Although it can be hard to sleep in times of stress, trying following these tips from the CDC on how to get more zzzz’s.

  1. Be kind to yourself. For Willett, the year has been a chaotic one. A few weeks before launching her first book tour, she was the victim of a hit-and-run car accident that she was lucky to have survived. As Willett was rehabilitating from her injuries, the pandemic hit.

She says, “Everything that has happened to me over the past year has made me realize that the main thing I have to do is forgive myself for not being perfect — and not handle everything all at once. So no regrets. I’ve enjoyed those ice cream and mashed potato and chocolate chip cookie binges. Maybe I’d have said to myself, ‘Go for it,’ but just not every day.”

Josefsberg agrees with this clean slate approach. Being upset or angry with yourself about gaining weight is counterproductive. “You didn’t do anything wrong. There was no road map,” she says. “These past few months, we were all in survival mode, doing whatever we could to feel better and relieve our stress.”

Instead, look forward and toward making changes that will help you to feel better in the future.

By Randi Mazzella

Randi Mazzella is a freelance writer specializing in a wide range of topics from parenting to pop culture to life after 50. She is a mother of three and lives in New Jersey with her husband and teenage son.  Read more of her work on randimazzella.com. 

Memories of a Sweet Treat With Mom

July 29, 2020

The tradition of 'froyo' at Bloomingdale's offered a respite for mother and daughter
By Candy Schulman

Whenever I’m in the neighborhood, I stop for a frozen yogurt in New York City’s Bloomingdale’s. Whether I’m shopping or not, I’ll head all the way up to the seventh floor to Forty Carrots just for their swirled refreshing treat. I pass on the sugary add-ins but in summer, when fruits look local and fresh, I’ll top it off with their original flavor with berries. I don’t even have to be hungry to sit and savor, spoon by plastic spoonful, slowing down when I inevitably get brain freeze.

Surprisingly, what I’m craving is my mother. Sharing one large “froyo” was our peaceful respite, détente from arguing over what clothes I should wear, my career choices, my parenting style. For those few moments, I was a small child again, out for an ice cream cone with mommy.

On Sundays, Mom would take my grandmother out from her nursing home for an ice cream cone. Afterwards, she’d drive us home from Jersey City to Brooklyn, staring intensely into the highway, a mysterious pained expression on her face. She’d flip on WOR talk radio to fill the silence.

Stories From a Painful Time

I didn’t know that Grandma’s nursing home was on the same grounds as the orphanage where my mother had lived from age six until her teens. Mom waited until her mid-eighties, when her Lewy Body dementia was progressing, to tell me, “My mother was too poor to keep me at home.”

The Jewish Home for Orphans, where my mother grew up feeling abandoned and unloved, was eventually transformed into a facility for older adults in need of full-time care. The chapel where Mom took Hebrew classes was still there, as were the painful memories where she went weeks, sometimes months, without a visit from her overburdened widowed mother.

She learned to keep her emotions to herself. Cool, sweet frozen yogurt dulled her pain for just a little while.

“She arrived through Ellis Island from Poland at the age of 17 without money or a word of English,” Mom finally explained, sounding more like an oral historian than someone struggling with the remnants of childhood trauma through unexplained fits of rage. “She migrated to this country after a jilted love affair. She went to night school immediately, learned the language. She worked in a factory by day and scrubbed floors in an office building at night.”

My mom saw her father only a couple of times. He died of tuberculosis when she was 10. My widowed grandmother made and sold bootleg gin during Prohibition, and took in boarders for income.

“But she didn’t have room for me,” Mom told me, her voice finally shaking as her abbreviated autobiography continued. “One day she said to me, ‘You don’t love me like a child should,’ and without thinking I said, ‘How could I? When all these years someone else brought me up?’”

She learned to keep her emotions to herself. Cool, sweet frozen yogurt dulled her pain for just a little while.

A Forced Intimacy

We shared froyo before, during and after the food trend started. She’d buy me outfits she insisted would flatter me in the Bloomingdale’s near her condo in Hollywood, Fla. We’d take a break for fuel at a more generic version of Forty Carrots than the flagship location on 59th Street.

I’d return the clothes when I got back to New York, fashions nobody would wear up north. Once, I received a snarky letter from Customer Service saying I was returning too many items. I used the refund to fund another plane trip to visit Mom.

I never left the store before soothing my spirit with frozen yogurt, alone, grieving over my mother’s decline in old age, the way Jewish mourners bring sweet pastries to shivah calls after a death to dull the pain of loss.

After I insisted Mom was no longer able to safely drive, I sold her car, let her license lapse and steered her to Bloomingdale’s in my rented car for frozen yogurt. When she could no longer use a credit card, I’d pick up the tab. When she needed me to escort her to the restroom afterwards, I obliged, ignoring my discomfort.

Once she asked me to take her to lingerie. I hadn’t even bought my daughter her first bra yet, and I was measuring my mother’s bust size, selecting something soft and flattering, guiding her into the dressing room, even fastening the brassiere when she was unable to figure it out.

Our forced intimacy had become commonplace, yet it always felt awkward and invasive.

The first time I saw her breasts when I was still a flat-chested teenager yearning to be as developed as my friends, I was shocked at how large they were — she was only a “B” cup, but she looked as zaftig as my well-endowed grandmother. Now, Mom’s breasts looked droopy and deflated, surrounded by folds of skin that hung from her torso.

“Something’s happened,” she said, staring into the mirror. “You’ve become my mother.”

‘Makes a Girl Look Like What She Ain’t’

Another time, she wanted to stop at the makeup counter. A woman with collagen lips gazed at my mother through eyelashes favored by silent movie stars. So began Mom’s first makeover since the heart surgeon implanted a stent in her blocked artery. I was dubious about makeovers, but in 10 minutes the garish black smudges above Mom’s eyes were gone. In spite of being an accomplished sculptor, my mother could no longer hold her hands steady enough to apply her makeup.

“You look great,” I told her.

“All that powder and perfume and paint…makes a girl look like what she ain’t.”  Smiling, Mom was pleased to remember this phrase when she couldn’t recall my ZIP code. “Your turn.”

Reluctantly, I glanced in the mirror. “Anything to hide the dark rings under my eyes?” I asked.

“I’ve been telling her for years to cover those dark rings,” Mom said to the woman at the counter.

Ten hours of sleep a night and a vacation from the constant worry about my mother’s health might be the best prescription for the bags under my eyes.

“You need hydration,” the makeup artist said urgently, patting my skin with concealer.

In minutes. my face looked lighter, brighter, less haggard.

“Ever notice how many mothers and daughters are here, sharing yogurt?” my daughter observed.

“You both look ten years younger!” she pronounced, and that was enough for my penurious mother to consent to buying the ingredients for transformation. We left with two tiny shopping bags, a $250 tab and the doubt that we’d use these magic potions as effectively at home.

In the car, my mother kept lowering the visor so she could see her reflection in the mirror. “I like it,” she said. “What do you think?”

It makes her look like what she ain’t. “You look ten years younger,” I said.

“So do you,” she said. “Wouldn’t it be wonderful?”

A Mother-Daughter Tradition

After Mom died, it took years for me to return to Forty Carrots. Back in Bloomingdale’s, I was now shopping with my teenage daughter. Unlike my mother, I let her select her own styles. Like my mother, I taught her how to shop the sales. And we always finished up with frozen yogurt.

“To Grandma,” my daughter said, as if toasting cocktails. Her memories of my mother were less conflicted, not fraught with criticism and disputes.

Our routine continued as my daughter graduated from college, got her first and second jobs, moved into her own apartment.

“Ever notice how many mothers and daughters are here, sharing yogurt?” my daughter observed, amused, her lips rimmed with chocolate, her preferred flavor.

“Tradition,” I said, and we started humming the song from Fiddler on the Roof, my mother’s favorite show. It used to embarrass me when she’d sing this in public, but now I unabashedly belted out the tune.

These days, I dash into the Bloomingdale’s in Soho, which caters to hipper and smaller-boned women than me. I ask a saleswoman where Forty Carrots is. “It’s just been renovated!” she says in a chipper voice. “You’ll love it.”

It feels a bit too modern and stark, but I settle in with a frozen yogurt, slipping their new perk of a punchcard into my wallet, wondering how long it will take to get a free one. To you, Mom, I silently say, wishing she were here to share one with me. I can never finish it myself.

By Candy Schulman

Candy Schulman’s award-winning essays have appeared in The New York Times, The Washington Post, The Chicago Tribune, Salon and elsewhere, including anthologies. She is working on a memoir about mothers and daughters. She teaches writing at the New School in New York City.

 

OPINION: My Case for Getting Dementia Testing

July 22, 2020

Why I want to know if I have cognitive impairment
By Paula Spencer Scott

 

I lose my glasses, forget actors’ names, repeat stories to my kids. None of these slips are red-flag symptoms of Alzheimer’s. Nevertheless, I’ve had a battery of cognitive assessments, from memory screens to genetic tests and brain scans.

Why? Because the science of brain health is advancing rapidly. Given my distressing family history of dementia, I prefer to err on the side of “knowledge is power,” rather than “ignorance is bliss.”

Earlier this year, to my surprise, the U.S. Preventive Services Task Force (USPSTF) chose not to recommend cognitive screening for asymptomatic older adults, saying the “evidence is insufficient to assess the balance of benefits and harms.” While evidence of harms of cognitive screening is limited, USPSTF says, some studies have shown “higher stress, greater depression and lower quality of life in persons aware of a diagnosis of cognitive impairment.”

Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, I had to know: Where do I stand?

I worry the net effect of this recommendation might be for people to think dementia testing is pointless — when its upside, underscored both by my own experience and experts’ insights — is huge.

Lifechanging, even.

“Cognitive screening” typically refers to brief tests like Mini-Cog, MMSE, MIS, and MoCA — the kind where you draw a clock face, recall words or count backwards by sevens to evaluate thinking skills. They’re part of Medicare’s annual wellness visit. The Self-Administered Gerocognitive Exam (SAGE) is a similar self-administered screen. Increasingly, people without symptoms also get other, prevention-focused tests — again, to assess status rather than to diagnose — including more detailed neurocognitive evaluations, physicals, labs and brain imaging (CT, MRI, PET).

I’ve had them all. Sadly, comprehensive testing isn’t financially or logistically feasible for everyone today. (My expensive scans, for example, were for a study I’m enrolled in.) Here’s why testing should be made more accessible and available:

To Get Clarity About Your Dementia Risks

Really: I’m no hypochondriac or test fanatic. But it’s one thing to hear of general risks and another to know your individual status. Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, much the way doctors now assess cardiac risk factors for heart disease and stroke, I had to know: Where do I stand?

My mental slips made me nervous as I underwent cognitive performance tests during a brain-health educational program I attended, again at the University of Texas-Dallas Center for Brain Health and at Weill Cornell Medicine’s Alzheimer’s Prevention Clinic, where I’m enrolled in two studies.

Thankfully, I aced them. Imaging showed no brain shrinkage or amyloid plaques, both dementia precursors. Yet, other testing revealed a number of modifiable risk factors setting me up for worsening future scores, including high homocysteine (an amino acid linked to dementia that’s remedied with B vitamins), a thyroid condition, sub-optimal cholesterol and a sad fat-to-muscle ratio.

To Motivate Behavior Improvements

There’s nothing like proof of weakness to motivate behavior change. For the first time in my life, I joined a gym and hired a trainer and began brain-beneficial high-intensity interval training. (Just walking — my old exercise — wasn’t enough, I learned.) I became even more vigilant about my Mediterranean diet, took prescribed supplements, learned “brain breaks” like mindfulness and more.

Two years on, my improved cognitive scores and lower cholesterol keep me going. As does finding myself in stronger shape at 60 than I was at 40. (True, I gained several pounds…but of muscle.)

I now run every choice I make through the lens of my brain health: Is this helping or harming?

For someone else, testing might raise urgency about lousy sleep, hypertension, poor glucose control or stress. Swiss researchers have suggested that having “motivational reserve” — motivation to improve one’s cognitive health — may even have a protective effect on the course of mild cognitive impairment.

To Establish a Cognitive Baseline

Would knowing my cognitive status also be a useful comparison to future changes? I asked this of some geriatricians. Absolutely, Dr. Howard Fillit, who’s also a neuroscientist and founding executive director of the Alzheimer’s Drug Discovery Foundation, told me.

“Data shows that fifty percent of people with Alzheimer’s aren’t diagnosed until the moderate stage,” he said. “People say, ‘There’s nothing you can do.’ That’s where I really go nuts.”

The sooner cognitive symptoms are noted, the sooner that any reversible explanations (like polypharmacy, low B12 or depression) can be considered. The sooner helpful medical care can begin, too; if not medication (the current crop is unimpressive), then joining clinical trials, putting memory supports in place or managing other conditions differently. For example, Fillit’s own father, a meticulous diabetic, repeatedly landed in the hospital before anyone realized he was misdosing insulin due to mild cognitive dysfunction.

To Help My Family

Some say they’ll worry about their cognitive status down the line. Not a great plan, said Dr. Leslie Kernisan, geriatrician and founder of Better Health While Aging, an educational site on health and caregiving. “There’s a gray area when people around you are worried before you are. You’re putting yourself and others at risk, but refusing to go to the doctor, mismanaging money, continuing to drive and ferociously resisting help.”

An average of two years of this turmoil ensue between family noticing symptoms and diagnosis, according to Fillit. By then, it’s usually too late to competently take part in detailed, dementia-specific advance planning.

“If you want to spare your family the norm, get evaluated,” Kernisan said.

To Ease Anxiety

Finally, many avoid cognitive testing due to a fear of finding out. I don’t get it. Research isn’t finding increased anxiety or depression from cognitive testing, as the USPSTF noted. Many people find relief in getting clarity, one way or the other. Anyway, most of us are the worried well: 97% of those 65-74 and 83% of those 75-84 don’t have Alzheimer’s.

Worth remembering: None of these tests can definitively say if you have, or will get, Alzheimer’s. Not even testing for the APOE-4 gene variant that carries a higher Alzheimer’s risk. Yes, I welcomed this controversial test, too. Though curious, I knew it doesn’t predict anything; it’s just another bit of useful data to inform choices and plans.

Like so many, I’ve experienced dementia’s dreadfulness up close, as it haunted five beloved relatives and upended our lives. Keeping a sharp proactive eye on this specter feels far less stressful than letting it sneak up on me unawares.

(Next Avenue invites opinion pieces that reflect a range of perspectives. Doing so helps our readers learn about views from a multitude of experts.)

By Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and Like Mother, Like Daughter. A longtime journalist, she's also an Alzheimer's and caregiving educator.@

 



2020 Best of the Best

July 17, 2020

We are once again participating in a People’s Choice awards contest sponsored by the Observer-Reporter newspaper in Washington County – and we need your help to be nominated as the Best of the Best!

 

Please take a moment and visit www.O-Rbest.com and nominate Presbyterian SeniorCare Network in the categories of “Best Assisted Living Facility/Nursing Home,” “Best Place to Work,” and “Best Retirement Community.”

 

Voting begins TODAY -- July 16! Get YOUR NOMINATION in before the July 25th deadline.

 

Here’s how:

Visit the nomination site by clicking here (or copy and paste this link: http://o-rbest.com/contest#//). This link cannot be opened in Internet Explorer, you will need to use another browser such as Chrome or Microsoft Edge.

  1. Scroll down and click on “Health
    1. Select “Assisted Living* Facility/Nursing Home” and type in “Presbyterian SeniorCare Network” 
  2. Next, in the left hand column, select “People and Places
    1. Select “Place to Work” and type in “Presbyterian SeniorCare Network”
  3. Finally, in the left hand column, select “Home Services
    1. Select “Retirement Community” and type in “Presbyterian SeniorCare Network”

      Note – if you nominated us last year, the account you created will work for your nominations this year. Simply type in your email address. If you did not nominate us last year, you will be asked to enter your email address and to create a password.

      If there are any other categories you wish to nominate our organization in, please feel free! If Presbyterian SeniorCare Network makes it into the Top 5 nominated organizations in our categories, we’ll move on to the next round which is voting.

      Thank you for nominating – your nomination helps us to build awareness for all of the great work that happens around our Network each day!

      *Just like with our CARF accreditation in assisted living, this nomination applies to personal care; personal care communities are accepted as entries in the category.

Celebrating 65 Years of Service!

July 14, 2020

At 96 years of age, Longwood at Oakmont resident, Mernie Berger, was honored as the very, first member of the Garden Club of Allegheny County (GCAC) to achieve 65 years of active service. For that distinguished length of service she was surprised with an award on behalf of the Garden Club of America at a very special ceremony.

Normally, an award like this would have been given at the annual GCAC June Meeting, but as a result of the COVID-19 restrictions on meetings and gatherings, the GCAC planned a small outdoor group surprise at Mernie’s Longwood at Oakmont residence.

Mernie who joined the Garden Club of Allegheny County (GCAC) in 1955, was humbled by the honor and remarked, “Everyone was so wonderful and kind to hold a ceremony for me, and I was so surprised by the whole thing. I certainly don’t deserve an award, though. I’m just doing what I love and have loved to do my whole life, which is gardening.”

As both a member of the GCAC and the prestigious Carnegie Museum Women’s Committee, Mernie has supported and led countless fundraisers and events throughout Pittsburgh, including the Three Rivers Arts Festival, which she cofounded.

Mernie’s daughter and fellow GCAC member, Mary Knowles Burgess, commented on her mother’s secret to successful living. Mary noted, “I have known my entire life how incredible my mother is, and there is nobody more giving than her. She doesn’t consider her involvement as anything other than doing what she loves and sharing it with those around her. She is inordinately knowledgeable in the field as a gardener and always pitches in to do everything. She is one of the greatest examples I’ve ever had, in spite of also being my mother.”

Interested in learning more about successful living at Longwood at Oakmont? Visit www.LongwoodAtOakmont.com.

 

Take a Break

June 25, 2020

Are you a full-time caregiver for someone with Alzheimer’s or dementia? A little breather may be just what you need.

Alzheimer's disease is life-changing for both those who are diagnosed and those close to them. Having a helping hand when you need it is key to keeping yourself, and your loved one living with dementia, healthy and happy.

When you need a break, consider adult day services.Not only is it good for you, but it’s good for your loved one. Adult Day Services offer people living with Alzheimer's and other dementias the opportunity to be social and to participate in activities in a safe environment.

Adult Day Services may be for you if:

  • You are a full-time caregiver: Adult Day Services can provide a much needed break. While your loved one is at adult day, you'll have time to rest, run errands or finish other tasks.
  • You work during the day: Adult Day Services can help you to balance a job with caregiving duties.
  • You want a safe, caring environment for your loved one:  Adult Day Service is a chance for your loved one to share time with their peers. It provides a chance for them to be social and to participate in engaging activities such as music and exercise programs, as well as fun outings. 

Did you know that Woodside Place of Presbyterian SeniorCare Network offers Adult Day Services at its campuses in Oakmont (412-828-5600) and Manchester Commons (814-838-9191)? We are here to help!

Taking a Familiar Walk: Dementia Amid COVID-19

June 12, 2020

A daughter experiences the neighborhood from her mom's perspective
By Laurie Matlin

My 95-year-old mother has reached the limits of her patience with the daughter in her basement. As one of her nine children currently helping out, I take no personal offense. Even for people without dementia, COVID-19 can complicate a well-planned life.

“I’m going away,” she declares one mid-spring day. “Everyone in this place has something to do but me!” My dad and I have just emerged from his office from where we ordered groceries online. She doesn’t understand this new system, and she believes I have overstepped my role.

Mom finds her wool coat and struggles with its zipper. Dad leans in to see how he can help. They turn to me, and I quickly zip the uncooperative coat.

As a power play among younger people who might wish to exert control, running away can be particularly problematic for people with dementia like my mom. Yet here we are, Dad and I both acting as accomplices as if Mom were a temperamental kindergartner bound to return before dinner.

She reaches for her hat and scarf. “Do you want the red one?” Dad asks helpfully. She ignores him and grabs the gray hat with matching scarf. Strands of frizzy silver curls slip out from under her cap, and she slides red Keds onto her feet. Wearing the same sweat outfit she has donned over the past few days, she suddenly looks more youthful.

“You can’t come with me!” she barks at me. Dad pleads for her to reconsider.

“I’m going away,” she declares one mid-spring day. “Everyone in this place has something to do but me!”

“I’m just going for the mail,” I tell her. Stay non-confrontational, I whisper to Dad.

With Dad on one side and me on the other, she manages a step from the front door, then another step off the stoop. Her eyes narrow, and she begins a steady pace along the front sidewalk.

She pauses at the driveway. “Which way did Sam go?” she says aloud to no one. Sam was my late brother with Down syndrome who regularly walked to a bus stop for his job.

Mom looks left, starts in that direction, then stops.

“There’s neighbors there,” she speaks again to herself, allowing me privileged insight as to how her mind is working.

Following Closely Behind

She glances in the opposite direction and sees a hill. “That’s too high,” she says, and I marvel how one part of her is speaking for another part to hear. She resumes her original direction, but now crosses the street.

“Hi Fran!” Pauline, the neighbor she sought to avoid, waves after watching for a bit. Mom makes no acknowledgement, her feet pattering on the pavement. Ten feet behind her, I serve as her shadow in stealth. I smile at Pauline, shaking my head and pointing to my ears to suggest Mom’s hearing inadequacies.

I follow Mom down the hill and around the bend. Tracking her requires few skills attributed to private eyes; I could have practically stepped on the back of her shoe without being spotted. While systematically on guard, she is less capable of easily turning around.

The neighbor teen on his driveway peers momentarily at this odd-looking lady who is overdressed in temperatures approaching 80 degrees. He smirks, resuming the whump, whump, whump of his basketball before pivoting in an easy layup.

From the other side, the mail truck approaches. The mailman looks at Mom as if he’s unsure how he might be of help. While swift for a person her age, Mom walks gingerly, almost like a child with autism, her big toe angling up, and it is perhaps this rigidity that alerts the viewer that something is slightly off. Mom slows at the tree, grabbing a branch. She seems to wish to wait for the mail truck to pass before resuming her plan.

It is at that moment that she turns around and finds me standing at her back. “Hi Mom! What are you doing over here?” I feign happy surprise that our paths should cross at just this moment. The ruse seems to work. “I am heading over there,” Mom points with no rancor in her voice.

I fall in line with her pace and we turn down another street. “The road is closed that way. Maybe we need to go a different way,” I suggest, pointing to the diamond-shaped construction sign. She continues past the sign. We proceed as two toddlers locked in parallel play, aware but not working at all together.

A Walk She Needed

“Where are you going?” I ask after a bit.

“Sam walked this way to catch the bus. It took him downtown,” she explains.

“And then what?” I ask.

“Who knows?” she replies without pausing. She tolerates my presence, perhaps welcoming another mind to support her if things turn rough. I marvel at the workings of her plan, as if following breadcrumbs left by Sam in a different time when buses operated because that’s what buses are supposed to do.

“Why do you want to go downtown?” I ask.

“I want to get to the railroad. Where my father worked,” she explains. She has talked recently about her need to get to her father at the train station, a commuter system that no longer exists in our town. Her father died a half-century ago.

She says she needs to rest and maneuvers herself atop a a tree stump cut at waist level. She watches the birds and feels the breeze, then eventually gets up to walk again.

“You’ve come an awful long way,” I suggest.

“I thank you for walking with me,” she says so softly I lean to hear her words. She still doesn’t look at me, but her voice conveys warmth that surprises me.

No answer.

“I wonder if we might turn around,” I probe gently.

“I’d like to get to the top of the hill,” she starts and then seems to change her mind. She turns around, like Forrest Gump who abruptly ends after running across the country.

“I thank you for walking with me,” she says so softly I lean to hear her words. She still doesn’t look at me, but her voice conveys warmth that surprises me. There is something she needed in this, I realize.

Life Is More Than Just Staying Alive

We continue silently, less fast-paced than on the outward jaunt. She rests at times, but then starts moving again. She reaches the side door to the garage.

“Do you need a hand?” Dad’s face suddenly appears at the doorway, surely watchful for her return.

“No, I can do it myself.” Her voice is resolute but without confrontation. Still, she takes his hand, then ambles up two steps.

When she turns, her eyes suggest a glimpse of a larger world. Her autonomy expanded just a little, other parts loosened from more rigid bounds. In this moment, her opinions still matter and her inner compass is shaken to new life. She looks straight at me.

“Thank you, Laurie,”she says, as if for that moment she can see me as something more than the invader in her land.

Life is more than just staying alive, her presence seems to say. Like unsteady feet on pavement, uncertainties will always arise. “Let life happen to you,” the poet Rilke wrote more than a century ago. “Life is in the right, always.”

The dual punch of dementia and COVID-19 is not easy, not even one little bit. But if we pay attention, maybe there’s still something we can learn.

By Laurie Matlin

Laurie Matlin is on personal leave from her job as a hospital and palliative care chaplain resident while she helps to care for her parents. A former journalist, she has been keeping a video diary of what she calls a sacred time in her family's life.    

 
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