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Clever Ways Senior Housing Has Kept Residents Engaged During the Pandemic

May 26, 2020

Creative thinking from three execs in a recent webinar on the topic
By Richard Eisenberg

Part of the The Coronavirus Outbreak: What You Need to Know Special Report

When Senior Living Foresight, a website for senior living community developers and operators, asked if I’d volunteer to host its April 24 Virtual Summit panel: How Senior Housing Is Keeping Residents Engaged in the Pandemic, I agreed. But I was a little dubious about the premise.

After all, we’re well aware of the COVID-19 problems some long-term care communities, their residents and families have been dealing with the virus’ spread; the inability of adult children to see their parents and the temporary halt to congregate dining and activities. As Senior Living Foresight publisher Steve Moran wrote in a wrap-up of the summit:“COVID-19 is hell for senior living.”

But after hearing the session’s panelists describe creative ways their businesses have recalibrated for the pandemic to excite, entertain and energize residents  — sometimes, with real  challenges — I came away pleasantly surprised. Also, I’m hopeful that these new ways of engaging residents in their 60s, 70s, 80s and 90s will continue and expand when the coronavirus fades.

A quick caveat: My panelists (and many summit speakers and attendees) represented independent living and life care retirement communities. So their residents tend to be healthier than those in nursing homes.

“We decided to actually Zoom to our residents. And I’m not going to say that’s been an easy journey,”

My panelists were Sara Kyle, director of resident experience at Holiday Retirement Senior Living Communities, which house more than 30,000 people across the country; Kelly Stranburg, wellness director at Mather and Theresa Perry, corporate director of hospitality and wellness services at Acts Retirement-Life’s 26 communities (full disclosure: Acts Retirement-Life is a sponsor of Next Avenue).

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Here’s how they answered my three questions about how they’ve engaged residents during the pandemic and expect to in the future:

What forms of engagement have you implemented for your residents during COVID-19?

Kyle first talked about what she and her colleagues stopped doing. “The whole calendar activities that we typically go off of — you could basically just toss it in the trash because it wasn’t going to work anymore,” she said.

Offering virtual web chat and conferencing services, like Zoom, has become a key way to talk to, and with, residents as well as to offer them instruction and entertainment.

“We decided to actually Zoom to our residents. And I’m not going to say that’s been an easy journey,” said Stranburg. ‘You can’t force tech on people, right?”

Initially, she said, Zoom “seemed a little scary, because we were so curious how many of our residents would actually embrace this. Where were they with their comfort when it comes to technology? And what we discovered is: shame on us.”

In fact, Stranburg noted, “every single week, we see our [Zoom] adoption numbers by our residents tick up.” Now, she added, “we’re offering a variety of exercise programs, mindfulness opportunities, art lectures and poetry groups.”

Sometimes, Mather is reaching out to lecturers and performers who’d been part of its programming before COVID-19.  “We’re figuring out ways to embrace their skillsets and talents that our residents love and bringing them into this Zoom world, if you will,” said Stranburg.

Perry echoed this (Acts uses Microsoft Teams, not Zoom), adding that staffers are helping lead the way through YouTube.

“We are definitely leaping into the virtual world as well,” she said. “We have created different ways for our staff to do videos through YouTube… When you have twenty-six communities and thirty fitness staffers, the only way you’re going to connect is through videos, because of the small classes you can have.”

Perry noted that “we have reached more people through virtual fitness than we had in the past.” Some classes are live. “Now we’re taking it to the next level, using our resident portal, and we are making the fitness videos available to do anytime they want.”

One of the panel’s attendees messaged that their community’s Zoom Bingo had gone from 22 people to 100 in two weeks — 25 of the 100 were on screen, 75 played using their phones.

The Touchtown video community engagement platform came up frequently as a huge help. “Touchtown has done a fabulous job of providing us with videos that we can upload to the in-house television, which is the channel [residents] have in their homes, which is important to them,” said Perry.

Stranburg mentioned that, in certain cases, residents who’ve embraced the new technologies during the pandemic have persuaded others to join in. She called this “the power of influence.” A resident who was first resistant might say: “My friend down the hallway called me and they were like, ‘Oh you need to do this with us. It’s really fun,’” Stranburg said.

“We have to continue to explore both sides, technology as well as non-technology for our residents.”

And, she added, “I also think the influence of family has helped. ‘Cause most certainly a lot of the residents I’ve spoken with have shared that they have done FaceTime and Zoom with a family.”

For those refusing to try the technology, some communities have launched phone groups. “They’ve been having conversations, book clubs, basically anything you can think of,” said Perry.

At Mather, Stranburg said, they use “telephone topics,” where anyone can call into the general phone line at a scheduled time to talk about the prearranged topic. Coming up: “10 tips to live well.”

Also recommended: The Institute on Aging’s 24-hour, toll-free Friendship Line, for non-emergency emotional support calls (800-971-0116).

Then there are what Perry called “boredom busters” — puzzles and games her communities hand out every week that can be done in the residents’ homes. “We have to continue to explore both sides, technology as well as non-technology for our residents,” she said.

One problem, however, has been engaging residents with hearing or cognitive issues.

What are some of the best practices you’ve discovered during the pandemic?

“Well-being calls; we call it a concierge service,” said Perry. “We had not done this before. It’s all of our staff calling our independent residents on a daily basis, seven days a week. Basically, we’re just checking in to make sure they’re all right. We’re making sure they have groceries, that they have medications, that they’re communicating with their families and friends. And how we can connect them if they need any help.”

This service also helps draw residents closer to staffers. Sometimes, when a person gets the call, Perry said, “they’re actually answering the phone saying, ‘Hi, Teresa. How are you today? I’m excited that you called me again.” Added Perry: “We’d never anticipated this.”

Stranburg said: “What I’ve really taken away from [the pandemic] is the value in making sure we continue to reinforce communication expectations.”

Kyle reflected with this: “It’s interesting what you do in crisis that you think, goodness, why didn’t we do that earlier?” One of those things Holiday Retirement began is a Bridging Generations website, where volunteers across the country are matched with residents and sign up to be buddies, communicating by phone or email. The volunteers can be any age.

Also, Kyle said, “we’ve gone to hallway activities. The doors of the hallways are absolutely six feet apart, so it’s the perfect spacing. We’re finding that people who never would come down to group exercise love hallway exercise. I saw some broomball going on.”

The pandemic has also shown senior housing operators the hidden talents of some of their staff.

“I didn’t realize we had a classical opera singer,” said Perry. “She has been creating videos for us through YouTube. She explains the opera first and then she sings it. It’s gorgeous.”

When Acts delivers food to residents each night, they add notes from children to their dinner bags.

Some Acts communities have been creating a senior housing version of American Idol. “We call it Acts idol. I love that,” said Perry. After staffers compete for three weeks, residents pick the winner. Next up: “the residents will do this with their talent,” said Perry.

There have also been some successful ideas just to brighten residents’ moods — what Kyle calls “small moments of surprise and delight.”

When Acts delivers food to residents each night, Perry said, they add notes to their dinner bags. “The one thing you’ll hear from the residents is that they get excited about the dinner meal coming because there’s going to be something exciting inside,” said Perry.

Holiday Retirement puts a small flower on dinner trays, along with a note from a staffer. “We’ve had some really emotional connections between staff and residents that have come through pretty big,” said Kyle.

What do you think will be embraced and continued beyond COVID-19?

“The young lady that’s doing the opera? She says she can’t wait for the day that she can actually do it in person, in front of everybody,” said Perry. “I think that would be something we should be tapping into. And hopefully, one day, we can have an audience again and have everybody get back together.”

Great-Grandmother Makes it Home for Mother’s Day

May 8, 2020

Recovers from COVID-19 in Less Than a Month
By Presbyterian SeniorCare Network

“I could not breathe and had no energy,” recalls Carol about the excruciating painful symptoms she experienced at her Tarentum home on March 31st. “When I could no longer get out of my bed to go to the bathroom, that’s when I called out to my family that they needed to get me to a hospital quickly.”

Several days earlier Carol had been to an urgent care center complaining of flu-like symptoms, where she tested negative for the flu and was encouraged to go home, rest, drink lots of water, and take some over-the-counter medications. For the healthy, active great grandmother who was used to watching her five-year-old great granddaughter three days-a-week, the speed and severity of what followed was unbelievable.

“I remember my son saying he would call an ambulance, and the ambulance workers arriving already wearing their protective equipment and taking me to the Allegheny Health Network hospital in Natrona Heights. And then I don’t remember anything else, because I was in a coma for seven days,” she explains. “I think the ambulance workers and the people at the hospital suspected COVID-19 but I don’t remember anyone saying it,” added Carol.

Carol came to learn that indeed COVID-19 was the culprit and that her family would need to be quarantined for 14 days. Fortunately, none of them developed any symptoms, not even her ailing husband who is battling stage four kidney disease.

But on Friday, April 24th, Carol was exuberant. After leaving the hospital on April 16 and being admitted for rehabilitation services at the Presbyterian SeniorCare Network Willows skilled nursing center, she was excited about the prospect of going back to her home in Tarentum. “I’m grateful that the Willows would take someone who was recovering from COVID,” noted Carol. “I had the greatest therapists in the world to help me get back my strength and back to being myself. What I was most concerned about was the 15 steps I’d have to go up in my house. But I’m feeling pretty confident that I can do that after the steps they’ve had me doing at the Willows. I feel I can go home and be safe. They gave me exercises to do when I get home. I really feel I will be fine.”

When asked what she would want people to know about her experience, Carol was emphatic, “I experienced a lot that I never want to experience again. I wouldn’t wish this on anyone. If I have to wear a mask the rest of my life, I will.” She added, “It’s a very hard thing to do all that we are asked to do but pay attention, wear your mask, don’t be so anxious to go back to the way things were. We need to be very cautious.”

Carol left the Willows of Presbyterian SeniorCare Network on Sunday, April 26th happily wearing her mask.

Editor’s Note: Per the Presbyterian SeniorCare Network COVID-19 Admissions Guidelines, Carol was not COVID positive upon admission to the Willows on April 16th. Previously COVID-19 positive candidates must meet certain criteria to be accepted for admission into our skilled nursing centers and, as an added precaution, are kept isolated in their rooms for 14 consecutive days and cared by team members who are wearing appropriate PPE. Also keep in mind that Carol’s experience may be different than others who have tested positive for COVID-19.

No Gym? No Worries — How to Stay Fit at Home

May 5, 2020

Plus: the right amount of exercise to stay healthy during the pandemic
By Sheryl Jean

Part of the The Coronavirus Outbreak: What You Need to Know Special Report

Since his gym closed, you might find Tom Hippman, 55, working out to Journey’s “Eye of the Tiger” in his Dallas living room, using whatever props he can find.

He’s been doing sit-ups against the wall, deadlifting 64-load bottles of Woolite, running through his parking garage and other exercises for 45 minutes a day.

Tom Hippman uses household items for weight training

“Being in a seven-hundred-square-foot apartment is a little more challenging,” Hippman says. “I’ve taken it on as a challenge.”

Many people are spending more time at home thanks to social distancing and shelter-in-place orders amid the coronavirus pandemic. That means some can’t go to the gym or group classes to stay fit like they usually would.

“With coronavirus out there, there’s a tendency not to exercise, but now it’s even more important,” says Dr. Rajiv Misquitta, director of lifestyle medicine at Kaiser Permanente Medical Center in South Sacramento, Calif. “If people don’t have a [fitness] plan at home, they’ll become sedentary and that will affect their health.”

Regular exercise is important to keep your body and mind healthy. But you don’t need a gym, expensive equipment, special clothing or a large space to do many activities at home.

Exercise, But Not Too Much

Adults typically should get at least 150 minutes of moderate-intensity exercise a week, according to the U.S. Department of Health and Human Services. But it’s different during this coronavirus pandemic, says Tamara Hew-Butler, an associate professor of exercise and sports science at Wayne State University in Detroit.

Instead, Hew-Butler recommends 20 to 45 minutes of moderate exercise three times a week. People, however, can modify that guidance according to their normal fitness routines. But exercise no more than five times a week and no exercise if you have flu-like symptoms, Hew-Butler adds.

To replicate your gym workout, replace your usual equipment with household items, such as canned food for barbells or a bowling ball instead of a medicine ball.

Research on the response of the body’s immune system to exercise shows moderate exercise is “the sweet spot” and inactivity or exercising too much can increase your risk of respiratory viruses, says Hew-Butler, an avid runner. The goal during a pandemic, she explains, is to maintain your fitness level, not increase it.

How do you know if you’re overdoing it? Listen to your body. Extreme soreness, pain or fatigue are probably signs you’re exercising too much.

Stick to an Exercise Routine

Squats work muscles from your feet to your core

Create an exercise routine. Make it simple, so you’ll achieve your goals and want to keep exercising.

Older adults should combine moderate aerobic activity with balance and muscle-strengthening (at least twice a week) exercises. Balance and muscle mass deteriorate as people age.

To mirror your gym workout at home, replace your usual equipment with household items, such as canned food for barbells or a bowling ball instead of a medicine ball.

Erika Nelson of St. Paul, Minn., often rearranges the living room furniture or moves her car out of the garage to perform exercises, yoga and Pilates. She does tricep dips with a chair and jumps off her deck.

Nelson, 54, says staying active is important to her.

“I really need it for my brain more than my body,” she says. “I push myself to do it, and I always feel better after.”

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Staying Motivated

Exercising at home can be challenging without equipment, an enthusiastic coach and team support. But it doesn’t mean you can’t interact with others. Talk to your trainer or workout buddies by phone and with video chat apps.

Another idea: Get into a little competition with friends on your number of daily steps or push-ups, suggests Misquitta, who is a certified personal trainer.

Mix various activities to keep things interesting or try something new. Think about what you enjoy: Gardening and dancing count as aerobic exercises, too.

If you need a little inspiration, you’ll find many online resources, such as yoga videos on YouTube and digital music services, like Spotify.

Track Your Progress

Stay motivated and accountable by tracking your activity. Wear a fitness tracker, use mobile apps to track your exercise regimen or simply write down what you do (number of steps or repetitions, your heart rate) on a calendar to see your progress week to week.

Exercises to Try

The following simple exercises don’t require special equipment. The how-to links for them are from the American Council on Exercise website, and the yoga poses are from the Yoga Journal website.

Cardiovascular training:

The National Association of Sports Medicine recommends cardiovascular training three to five times a week or one to three times a week for beginners.

“You want to get your heart rate up a little bit, get warm and start sweating,” Misquitta says. He suggests walking or jogging in place while watching television, walking up and down stairs, dancing or doing jumping jacks.

Core (abdominal muscles):

  • Ab crunches: This provides similar benefits as sit-ups with less strain on your neck and back.
  • Planks: While planks focus on the core muscles of your abdomen and lower back, they really work the whole body. You can start on your knees or place your elbows on a hassock or couch.
  • Trunk rotations: This exercise usually is done with a medicine ball, but you can use a household item, like a heavy book. Start with two pounds and gradually increase the weight.

Upper body:

  • Push-ups: In addition to upper-body muscles, push-ups work your core. If you can’t do push-ups on your toes, start on your knees or plant your feet against a wall.
  • Bicep curls: You can use water bottles or jugs of laundry soap instead of barbells.

Lower body:

  • Squats: Misquitta says squats give you the most bang for your buck. Squats work muscles from your feet to your butt and your core. Use a chair for support.
  • Lunges: This exercise also strengthens abs and improves balance and mobility. First, you may want to become comfortable doing a single-leg stand. Later, extend your arms toward the front or hold weights for a greater challenge.

Yoga poses for balance:

  • Chair pose: It also strengthens the lower back and arm and leg muscles.

Tree pose: Beginners can stand near a wall for support. Extend your arms toward the ceiling for more intensity.

Ways to Bolster Your Finances Due to the Coronavirus

May 1, 2020

Timely advice on money emergencies, debt and your retirement
By Kerry Hannon

Part of the The Coronavirus Outbreak: What You Need to Know Special Report

The coronavirus outbreak, we know, is a health crisis and a national economic crisis. It’s also, for many Americans, a personal-finance crisis.

Many of us, especially those in our 50s or 60s, are now very worried about our money due to the pandemic.

The 22% drop in the Standard & Poor’s 500  stock index since late February has shrunk retirement funds for those who had any. A MagnifyMoney survey found that 38% of investors are worried they’ll lose all their retirement savings due to the COVID-19 outbreak.

Millions have lost their jobs or on the brink of a layoff. More than 6.6 million Americans filed unemployment claims last week, which is a record. And in a SimplyWise survey, 40% of respondents said they’ve had their income reduced or lost due to the coronavirus.

Yet there are still mortgages, rents and utility bills to pay, not to mention groceries, gasoline and prescription drugs. What’s more, the Kaiser Family Foundation estimates the average cost of COVID-19 treatment for someone with employer-based insurance and no complications would be nearly $10,000.

I not only feel your pain, I’m living it. My income has been slashed due to cancelled (hopefully rescheduled) speaking events. And, although my retirement accounts are well-diversified, they’ve taken a hit. I’m a dedicated long-term investor, but I confess that I’m deeply concerned how long it might take the stock market to recover.

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That said, I’m a personal-finance writer and my job is to offer helpful advice. So, here are some ways to bolster your finances during the pandemic; I hope you find them useful.

Take advantage of what the recent coronavirus stimulus laws offer you. Soon, you’ll likely receive a recovery rebate: up to $1,200 for most individuals and $2,400 for married couples. And if you’ve lost your job or have been furloughed due to COVID-19, you may be eligible for enhanced unemployment benefits. They include an additional $600 weekly payment above your state’s maximum, for up to 4 months. Unemployment benefits have also been extended by 13 weeks.

If your income has dwindled or evaporated, you may need to pull some money out of a retirement plan just to pay the bills and put food on the table.

Look for ways to slash your spending if you can. “Conserve and cut back on nonessential expenses,” advises Rob Williams, vice president of financial planning at Schwab Center for Financial Research.

He acknowledges that doing so may not be easy. “But now might be a time to cancel subscriptions or memberships,” he notes. Check your latest credit card statements; you may be being charged automatically each month for some subscriptions and memberships.

Call your cable provider and ask about discounts it may be offering due to the circumstances or switch to a less expensive plan. Your cell and landline phone provider might let you convert to a lower-cost service, too.

And hold off making non-essential purchases online.

Work on building up your emergency fund. Ideally, you have at least six months of living expenses set aside in a bank- or money-market account.

If not, do what you can to add to your cash reserves to help you through this rough patch.

Take any extra money you’ll have from spending cutbacks and put it in your emergency fund.

Rob Williams of Charles Schwab

If you must, make a withdrawal from a retirement account. I generally strongly recommend against doing this. But if your income has dwindled or evaporated, you may need to pull some money out of a retirement plan just to pay the bills and put food on the table.

My Next Avenue colleague Richard Eisenberg recently wrote about ways the $2 trillion stimulus law — the CARES Act — has removed tax penalties on some retirement-plan withdrawals. I encourage you to read his piece, “3 Ways the COVID-19 Stimulus Law May Help Your Financial Problems.”

The CARES Act also raises the amount you can borrow against your 401(k) plan to $100,000 or 100% of the account balance, whichever is less. And loan repayments due before Dec. 31, 2020 can be suspended for a year.

Voya Financial just started waiving its fees for 401(k) and other retirement plan withdrawals associated with the coronavirus and allowed under the CARES Act. Other financial firms may follow.

Consider taking money out of non-retirement investments you own. For instance, short-term or intermediate-term bond funds could come to your rescue, said Williams. You may owe commissions on these sales, but you’ve probably already paid taxes on the income distributions.

Look into tapping a home equity line of credit (HELOC). If you own a home, you probably have accrued equity — your home’s value minus what you still owe on your mortgage. You could get quick cash by borrowing against it through a HELOC, a line of credit for a set time period of, say, 10 years. The interest rate is often lower than on other loans. Recent average rate: 6.12%, according to Bankrate.com.

Refinance your mortgage. This will take some time and you’ll need a solid credit history. And you’ll want to run the numbers to see if the amount you’d save over time by refinancing would justify the closing costs. Financial experts generally recommend considering refinancing if you can get a 0.5 to 1 percentage point drop in your mortgage rate.

Ask about a mortgage deferment. Most mortgage lenders want to help struggling homeowners through this crisis. In fact, some banks are deferring mortgage payments up to 120 days due to financial hardship. Your lender might agree not to report any missed payments to the credit agencies during the pandemic.

According to the Consumer Financial Protection Bureau, the CARES Act requires lenders to tell credit bureaus that consumers are current on their loans if the borrowers have sought relief from lenders due to the pandemic.

Try to find lower-rate credit cards. If yours has a high interest rate, you might be able to find one charging less to keep your payments low.

Consider applying for a balance-transfer card that doesn’t charge a fee for moving over your debt. Look for one with a year or more of a 0% Annual Percentage Rate (APR) and aim to pay it off before that 0% grace period ends.

You’ll typically pay a transaction fee of 3% to 5% of the transferred amount. However, the long-term savings from the reduced rate can compensate for this fee.

Ask your credit card issuer about getting a higher credit limit. Sign in to your account and look for an option to make a request. Or call the number on the back of your card and ask a customer service rep.

Negotiate with lenders, if necessary. You may be panicked about not being able to make your bill payments due to a loss of income. If so, contact your creditors about a reduced interest rate or deferring or extending loan payments. Explain your situation and why you can’t make your regular payment.

If you’ve racked up late fees from missed payments, ask if they’ll be forgiven due to the pandemic. Some creditors might excuse fees if you’ll agree to make your monthly payments going forward or if you’ve always made timely payments in the past.

Investigate tapping your life insurance cash value. If you have a permanent life insurance policy, you typically can access part of your cash value (the savings part of the policy) through a withdrawal or loan. You have to pay interest on a policy loan, but there is no repayment schedule.

If you die with a loan outstanding, that amount gets subtracted from the death benefit, but is not taxable.

2 Big-Picture Tips

Finally, let me make two big-picture points:

First, emotions run wild when there are market swings like we’ve seen lately, and fear can tempt you to pull out all or much of your stock-market holdings. Don’t.

“If you are still working and healthy, stay the course,” said Williams. “Markets do recover.”

Try not to pull back on 401(k) contributions at work, even if your employer is one of the growing numbers cutting back or temporarily halting investment matches for employees.

In short, stay focused on your long-term financial objectives and how to reach them.

Second, talk to a financial adviser who can help you weather the storm. I recommend working with a fee-only financial adviser, rather than one who charges commissions, and one who is a fiduciary (which means the adviser puts your interests first).

My adviser helps ease my mind when markets gyrate.

“These are clearly stressful times,” Williams said, “and investing is stressful even in the best of times. So, having a plan, talking with someone and getting a roadmap can boost confidence right now.”

By Kerry Hannon

Kerry Hannon is the author of Never Too Old to Get Rich: The Entrepreneur's Guide to Starting a Business Mid-Life. She  has covered personal finance, retirement and careers for The New York Times, Forbes, Money, U.S. News & World Report and USA Today, among other publications. She is the author of a dozen books including Money Confidence: Really Smart Financial Moves for Newly Single Women and What's Next? Finding Your Passion and Your Dream Job in Your Forties, Fifties and Beyond. Her website is kerryhannon.com. Follow her on Twitter @kerryhannon.

Virtual Connections Have Never Been More Popular

April 17, 2020

As people shelter in place, more are using smart devices to reach loved ones
By Michelle V. Rafter

Part of the The Coronavirus Outbreak: What You Need to Know Special Report

Rich and Kirsten Meneghello and their daughter Lucy have dinner with Rich’s mom Margaret “Marge” Meneghello, 75, every Sunday, trading off between gathering at their house in southwest Portland, Ore., and Marge’s apartment a few miles away.

But they’ve been hunkered down in their respective residences since mid-March because of the COVID-19 pandemic. So, they had to figure out a different way to commune. Now they have a standing Zoom call every night at 7 p.m; Zoom is a popular videoconference service.

Some nights they talk for a few minutes. Other nights they dial into Zoom to play Yahtzee, using separate sets of dice and adjusting their laptops so the built-in webcams show what they rolled.

“I’ve been using Zoom for work for a while, so for me it was a natural suggestion,” Kirsten Meneghello said. “It’s been lovely. Video is so much more valuable than the phone. You can see the person’s energy and mood.”

As people practice physical distancing in the wake of the pandemic, connecting virtually has become the next best thing to being there for staying in touch with older family members, whether they’re a few miles away or across the country.

“It’s been a lifesaver on both ends during this quarantine,” Elizabeth Vowles said. “She loves being able to see us and  interact with us.”

Video-calling services, connected tablets, smart-home assistants and other online devices have become lifelines for older people whose regular routines have been disrupted and for whom social isolation can lead to physical and mental health problems.

“The virus has been a way to prove that connecting virtually can decrease social isolation,” said Liz Hamburg, founder of Candoo Tech, a company that provides tech support to older adults. “It has been a testing ground to prove that this can be done.”

Activating the ‘Granny Cam’

Some families were connected long before the outbreak, of course. Last year, Marian Dolan was stuck in the Philippines for a month after her mom was hospitalized unexpectedly while the two women were there to visit family. Her mom, Luz Reyes, 81, recovered, but needs kidney dialysis three times a week.

Dolan set up in her parents’ house in San Francisco a connected video camera she got at Costco for $69 that she calls “the granny cam”  — to keep an electronic eye on them from her own home in Portland, 600 miles away. A mobile app connected to the device streams real-time video to Dolan’s phone.

Since the outbreak, she checks in on her mom and dad, Vicente Reyes, 83, every day. “Sometimes in the middle of the night, I look at it to make sure they’re okay,” Dolan said.

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The camera’s audio channel lets her pop in to talk instead of calling on the phone, which her folks find more intrusive. “When I call, they want to get off the phone because they’re in the middle of a Filipino soap opera,” Dolan said.

When Brett and Elizabeth Vowles moved his 86-year-old mother into an assisted living apartment in the Seattle area last year, Brett set her up with an Amazon smart-home device with a small screen and an Alexa digital assistant so they could make video calls.

The virus outbreak has hit Seattle especially hard — 2,580 cases and 132 deaths as of March 25 — and people have been sheltering in place there longer than almost anywhere else in the country. “It’s[the video calling] been a lifesaver on both ends through this quarantine,” Elizabeth Vowles said. “She loves being able to see us and interact with us.”

Getting Tech Support

Other families saw the coronavirus outbreak as a sign to get connected. Hamburg deals with a lot of them. Candoo Tech, which is New York-based, teaches older adults how to use smartphones, tablets, computers and safety devices such as fall detection devices and home sensors. It also provides subscription-based in-person and remote tech support.

Normally, the two-year-old company’s concierges make house calls across the tri-state area. That stopped in mid-March because of the outbreak. Since then, Candoo Tech ramped up online support for people who need help and created free online tutorials for FaceTime and Zoom and online shopping apps for using Amazon and Seamless.

The company is fielding a lot of calls from people who now need help getting tech things set up. One woman wanted assistance learning WhatsApp, the Facebook-owned messaging service, so she could use it to talk to a son living in Europe.

Candoo also assists its partner organizations helping their members stay connected. One is a New York City synagogue that switched all its in-person adult classes to online learning. “One of our last in-person sessions was at one of their classes to teach them how to get on Zoom,” Hamburg said.

Stumbling Blocks

Despite the best intentions, however, this kind of technology doesn’t always cooperate, as I can attest from personal experience.

Close to 20 family members dialed into a Zoom party I hosted for my dad’s 84th birthday on a recent Saturday night. One of my siblings gave my father and mother a quick lesson before the big day. My parents used the assigned link and access code to call in at the appointed time. But a bad Wi-Fi connection in their condo made it hard for other partygoers to see or hear them.

And establishing a solid virtual connection isn’t always about the technology. Some older adults need a little coaxing — not because they’re technophobes, a tired stereotype.

Carri Bugbee bought a tablet as a birthday present for her mom Connie, who turned 75 on March 22 and lives in Eugene, Ore., a two-hour drive from her daughter’s home in Portland. But her mom is not convinced she needs a tablet. “She wasn’t happy because she doesn’t like people buying her things,” Carri Bugbee said.

With church services and volunteering canceled, family get-togethers are more important than ever.

Connie Bugbee lives alone, doesn’t have a computer and cut the cord on cable TV after retiring last year. Because of the state’s shelter-in-place order, she can’t see her significant other. She thinks she should be able to get by with a phone, but Carri Bugbee thought it would be easier for her mother to video-chat, read e-books and watch her favorite British murder mysteries on something bigger than a smartphone screen.

So, Carri bought a Samsung tablet, added it to her own T-Mobile account and spent hours downloading apps and setting up accounts in her mother’s name. Then she mailed her the device. Despite the initial misgivings, by the second day, Connie had downloaded a few more apps. “She seems more interested and receptive,” Carri said. “I’ve realized I have to break her in slowly.”

Now Adept at Zoom

When Oregon’s shelter-in-place order took effect, it curtailed an active social life for Marge Meneghello revolving around church, volunteering at a local library and after-school program, as well as seeing friends and family. With church services and volunteering now canceled, family get-togethers have become more important than ever.

Thanks to the nightly calls, Meneghello has become so adept at Zoom, she uses it to chat with church friends, Kirsten Meneghello said.

The stay-home order canceled an early April trip to Alabama that Marge had planned to see a sister whose husband died recently (not of the virus) and another sister who lives there.

Instead, the three sisters connected — how else? — through Zoom.

By Michelle V. Rafter

Michelle V. Rafter is a Portland, Oregon, business reporter and long-time chronicler of the intersection of technology and work.



Trouble Sleeping Due to the Pandemic? Try These Suggestions

April 8, 2020

A variety of techniques can help calm the mind for better sleep
By Patricia Corrigan

Part of the The Coronavirus Outbreak: What You Need to Know Special Report

Sleep is always important for good health, and that’s especially true in this challenging time. When you rest well, you’re better equipped to face the day. But right now, in the midst of the coronavirus pandemic, heightened anxiety and unstructured time may cause insomnia even in those accustomed to a full night’s sleep.

That’s not good, for more than the obvious reason.

“It’s possible that sleep plays a role in strengthening the immune system and its response to infection,” says Dr. Rachel Darken, the sleep medicine fellowship director in the Department of Neurology at Washington University School of Medicine in St. Louis. “That could be part of the reason why sleep has been preserved in our evolutionary development.”

These days, many people who are used to going to work and living active lives are spending more time at home, and that has consequences. Darken says that scientists think there is a “bi-directional relationship” between insomnia and anxiety.

“Anxiety influences sleep and sleep deprivation influences anxiety — they feed on each other.”

“Anxiety influences sleep and sleep deprivation influences anxiety — they feed on each other,” she says. And, “even if you’re not particularly anxious about the new coronavirus, the disruption in your routine can lead to difficulty sleeping,” Darken adds.

More bad news for insomniacs: Losing sleep can lead to a level of immune dysregulation, “a kind of pre-inflammatory situation,” Darken says. “That can put the body in a bad state and keep it from responding appropriately to infection or make you more prone to chronic diseases. That’s not good for you.”

An Expert’s Tips on How to Sleep Better

What can you do about insomnia?

First, establish a routine, even if there is no reason to get up or go to bed at your usual time each day. “It’s important to maintain consistency,” Darken notes. “That may decrease some anxiety and help you sleep better.”

She also recommends these standard “sleep hygiene” practices:

  • Spend time in the sunlight or use a lightbox (of 5,000 lux or higher) each day
  • Exercise early in the day
  • Reserve your bedroom for sleep
  • Spend time winding down before bedtime
  • Put clocks out of sight once you’re tucked in

At the end of your day, Darken suggests, keep the lights dim and avoid anything that involves the outside world. That means social media, news reports and emails. Read a book, she says, take a relaxing bath or listen to music you enjoy or a soothing podcast.

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We are committed to reliable reporting on the risks of the coronavirus and steps you can take to benefit you, your loved ones and others in your community. Read Next Avenue’s Coronavirus Coverage.

“Maybe your mind is going all day, being anxious about the virus, your bank account or whether you will run out of toilet paper, but it’s not helpful to think about all this at bedtime,” Darken says. “If you start to think about your anxieties, tell yourself to stop, that you’ll think about them tomorrow instead, say at 10 a.m.”

Set Aside a ‘Worry Hour’

Leslie Davenport agrees. A licensed integrative psychotherapist based in Tacoma, Wash., Davenport recommends setting aside a “worry hour” each day to address anxieties.

“That helps us develop a strength, just as you would strengthen a muscle, over our mental habits,” she says. “Designate a specific time to let yourself be with your fears, a time when you can write, think or talk with a friend. That allows you to honor your feelings and give them an outlet, and it also gives you more influence over your feelings.”

If your mind is reluctant to restrict gloomy thoughts to just an hour each day, Davenport cautions, you’re not likely to get a good night’s sleep even if you follow the recommended sleep hygiene steps.

She recommends staying attuned throughout the day to when your mind starts to race and then “reeling yourself back” to the present moment.

Davenport offers this metaphor: “If you’re driving 60 miles per hour all day, you don’t keep going at that speed as you pull into your garage,” she says. “Whenever you catch yourself making up a doom story about the future, slow down. Try to let go of projecting, and just be in the moment.”

That can be a challenge, especially because we’re all subject to the “negativity bias,” Davenport says. “Research shows our brains are more tuned in to bad news than good news. And a negative event is amplified five times over a positive one in terms of how our brains or bodies react. That’s another reason why being intentional at this time is so important, so we can get our thoughts and feelings back to a neutral place.”

Try Relaxation Exercises Just Before Bed

A master yoga teacher based in Oakland, Calif., Margi Young teaches classes, trains yoga teachers and leads retreats all over the world. But sometimes, when she slides under the covers at night, her fears for the future rise up.

“Just as we lie down, ready for sleep, sometimes our minds wake up and race toward terrifying thoughts,” Young says. “It’s so easy to put ourselves in a contorted posture and start catastrophizing.”

Young knows how to call a halt to that and her tips are useful for anyone, whether or not you’ve ever practiced yoga. “To calm anxiety and avoid insomnia,” Young says, “I recommend a quieting of the body and the mind through a yoga pose called “shavasana,” which brings mindful relaxation.”

You can do the pose on the floor or in your bed. “With a pillow under your head, lie on your back in a neutral position, with your arms resting slightly away from your body and your legs a little apart,” Young says. “Then scan your body, noticing places that feel tense. Let that tension release until you feel your body softening, melting into the bed or the floor.”

Next, Young recommends, pay attention to your breathing. “This is science; breathing mindfully helps calm your nervous system and helps slow your heart rate and your metabolism,” she says. “Inhale deeply to a count of four, breathing all the way to your fingertips and to the tips of your toes. Then exhale to a count of six. Do this six times, and you should feel yourself sinking into sleep.”

Some people fall asleep easily enough, but awaken long before morning. Others can’t get back to sleep after getting up at night to use the bathroom. “That’s when I always want to think terrifying thoughts, but I make myself breathe with the longer exhale again,” Young says. “Without fail, I put myself back to sleep.”

Rest well.

By Patricia Corrigan

Patricia Corrigan is a professional journalist, with decades of experience as a reporter and columnist at a metropolitan daily newspaper, and a book author. She now enjoys a lively freelance career, writing for numerous print and on-line publications. Read more from Patricia on her blog.

Easing the Isolation During the Coronavirus Crisis

April 3, 2020

Stay-at-home orders can make isolation even worse for many
By Liz Seegert

The coronavirus (COVID-19) pandemic has much of the world sheltering in place. While it may be frustrating and challenging for many of us, this increased isolation is especially hard on the mental and physical health of older adults — the same group most at risk of getting the virus with and severe consequences of infection.

About 28% of older adults in the United States, or 13.8 million people, live alone, according to a report by the Administration for Community Living’s Administration on Aging. While many older Americans say they’re not usually lonely or socially isolated, they now find themselves suddenly cut off from in-person contact with friends, family and activities that help keep them engaged. This increases anxiety and fear and potentially leads to long-term negative consequences, say mental health experts. But there are ways to ease the isolation.

Research links social isolation and loneliness to higher risks for a variety of physical and mental conditions: high blood pressure, heart disease, obesity, a weakened immune system, anxiety, depression, cognitive decline, Alzheimer’s disease and even death, according to the National Institutes of Health. People who find themselves unexpectedly alone due to the death of a spouse or partner, separation from friends or family, retirement, loss of mobility and lack of transportation are at particular risk.

Now, we can add COVID-19 mitigation measures to this list.

One Crisis on Top of Another

“What I have seen in my clinical practice is that disruption in routine and the unknown is very anxiety-provoking,” says Eve Byrd, a nurse-practitioner with expertise in geriatric psychiatry.

Byrd, who directs the Carter Center’s Mental Health Program, says one key strategy for maintaining good mental health in the current climate is limiting exposure to what’s on television. However, TV or radio may be the only sources of distraction for older adults, if poor eyesight limits their ability to read, knit or enjoy hobbies that require visual acuity.

“What I have seen in my clinical practice is that disruption in routine and the unknown is very anxiety provoking.”

What concerns Byrd most is that without people coming to visit or regular interactions with others in the community, it’s hard to know how well an older adult is truly functioning. Things can go badly very quickly.

“When that routine is disrupted it’s very, very scary, because they may not have the wherewithal to be able to reach out, especially if they’re in a building that doesn’t have any kind of services or isn’t checking in on people,” Byrd says.

So, some older people may become depressed, and begin to feel hopelessness about their situation. Some fear going out for groceries or to the pharmacy. They may stop preparing meals or taking their medication. Fortunately, service providers in many communities recognize this risk — and hundreds of volunteers have stepped forward to deliver meals, conduct wellness checks by phone or just leave a note on an older person’s door to let them know they’re not alone.

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We are committed to reliable reporting on the risks of the coronavirus and steps you can take to benefit you, your loved ones and others in your community. Read Next Avenue’s Coronavirus Coverage.

Easing the Isolation

For older adults who suddenly find themselves homebound, there are numerous ways to cope, according to Byrd.

“Scheduling their day, if they’re able to do that, is really important,” she advises. “It’s a technique we use in psychosocial services called ‘behavioral activation’. And what that means is really being very intentional of thinking, what are the things that you enjoy doing, and then adding more of those to your day.”

It’s not about just turning off the television. It’s thinking of things that you enjoy doing, and then adding a couple of those activities to the day just so it’s less monotonous, Byrd says. It can be simple pleasures, like writing letters to friends, sitting on the front porch for 20 minutes, calling a grandchild, looking at an album of family photos, or at a magazine. It’s not as easy as it sounds, Byrd admits, but it really makes a huge difference.

“You have to kind of think of those simple pleasures and try your best to keep those routines up and stay really intentionally thinking about what are things that make me feel better versus sitting and kind of obsessing over these things that we don’t have control over right now,” Byrd says.

How to Be Alone, but Not Lonely

There’s a difference between being alone and being lonely, according to Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College in New York City and a professor at Hunter College’s School of Urban Public Health. Finkelstein is also a Next Avenue Influencer in Aging.

She recently wrote about how social distancing can not only save lives, but can also be an opportunity for those of us who have access to social networks, information and resources to help those who do not.

“For lots of people, getting out and doing errands is an important part of their socialization,” Finkelstein says. “I’ve characterized it as their spiderwebs; it’s in a lower level than a social network.” We can help our older relatives, friends or neighbors figure out how to keep those networks active.

“We need to be more committed in our actions as far as older adults, and we need to look for signs long after the crisis is over.”

If the older adult has internet access, you can help them sign up for services like grocery delivery, even if they normally go out to shop. Regular check-ins from multiple family members can be very helpful, especially if you can conduct Zoom or FaceTime chats. “But sometimes, technology just adds more anxiety,” Finkelstein says.

She suggests older adults even become “virtual” volunteers themselves, perhaps making phone calls to others who may feel isolated and alone. Many senior centers, places of worship or settlement houses welcome the participation.

“It would say to older people who are able, that ‘I’m helping, participating.’ Feeling like you’re contributing is a good antidote to the messages that are making you feel like you have a problem,” Finkelstein says.

The New York Academy of Medicine has compiled this list of additional ideas on how we can help our older neighbors who may be anxious about venturing out or have no one nearby to help.

Even when this public health threat eases, the mental health needs of older adults need to remain in the spotlight, Byrd says. Depression, anxiety and other issues are often overlooked as just something that happens to people as they age.

“We need to be more committed in our actions as far as older adults, and we need to look for signs long after the crisis is over,” she says.

By Liz Seegert

New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, The Los Angeles Times and The Hartford Courant.

A Legacy Lives On: Remembering Ruth F. Anderson

February 14, 2020

Ruth F. Anderson's petite exterior hid a big heart for helping those in need. And it was the residents and team members of Presbyterian SeniorCare Network who benefitted from that kind heart.

 Kathy and Ruth Anderson.jpg

Photo caption: Kathy Anderson (L) and Ruth Anderson (R)

“My mom started at The Woodwell, a senior community, in 1964 as part of the Auxiliary. She was very involved with the organization, and the well-being of the individuals who lived there was so important to her. The group of women who ran The Woodwell, the United Presbyterian Women's Association of North America, took their roles very seriously," says Kathy Anderson, daughter of Ruth Anderson.

The Woodwell was located in Wilkinsburg and served as a safe place for older adults, mostly women, to live. In the mid-1990s, The Woodwell fell on challenging times and reached out to Presbyterian SeniorCare Network for help in managing the property.

Ruth was instrumental in establishing the management contract with Presbyterian SeniorCare Network, who managed The Woodwell for nearly six years. Through her leadership, there were studies done to see what they would need to do to have their building and operations meet the current code requirements. After the studies were complete, The Woodwell Board of Directors decided it wasn't feasible to continue running the community.

“Due to the trust we had built up over the years, The Woodwell Board decided to merge with us," says Paul Winkler, President and CEO of Presbyterian SeniorCare Network. “We committed to taking care of their residents, offering them a place to live at our Oakmont campus, as well as bringing over any team members who wanted to continue working," continues Paul.

The Woodwell Board of Directors was very much involved with the day-to-day operations at the community.

“They wanted to be sure that we would be good stewards of their resources and shared the same values and commitment of caring for their residents, most of them had outlived their means," says Paul.

To ensure a smooth transition, Ruth and a few others joined various Presbyterian SeniorCare Network Boards, including Ruth's daughter Kathy, who joined our SeniorCare Network Board. Ruth initially served on the Presbyterian SeniorCare Board from 2000-2005, and then was a founding member of the Presbyterian SeniorCare Foundation Board since its inception in 2002; she was elected Emeritus Director in 2010.

“Through our partnership, there were funds that came from the merger that were used to buy a van to bring employees to Oakmont from the Wilkinsburg area where many of The Woodwell team members lived. Other funds went to explore hospice care; that is why our hospice care is called The Woodwell Hospice Program," recounts Paul.

“What I remember most about Ruth, who became a dear friend and colleague, is her positivity, gentility and her steely resolve. Whether at The Woodwell or serving on our Foundation Board, Ruth put all of her effort towards ensuring that we were meeting our mission of serving seniors in a compassionate and caring way," says Paul.

Through her vision to provide for future generations of Presbyterian SeniorCare Network residents, Ruth helped launch what is now the Anderson Legacy Society, which recognizes planned giving donors for their commitment to the future of Presbyterian SeniorCare Network. Today, the Anderson Legacy Society has grown to 56 members.

“My mom knew the importance of keeping something going, and that's why she was so committed to helping launch planned giving at Presbyterian SeniorCare Network," says Kathy. “She knew firsthand that often what you get from state funding just isn't enough to cover what you need. That's why legacy gifts are so important, they allow an organization to continue living their mission. We need to take care of our elders with compassionate care, and my mom believed that Presbyterian SeniorCare Network excelled at that."

Just as important as her commitment to residents, was Ruth's compassion for the team members who cared for them. In 2005, Ruth and her late husband Bill anonymously provided the initial funding for the Presbyterian SeniorCare Network Employee Emergency Loan (PEEL) Program. The program provides no-interest loans for employees in a time of need, and is still in operation today. To date, nearly 300 Presbyterian SeniorCare Network team members have benefitted from the PEEL Program while facing emergency needs.

Ruth passed away in July 2019, and all of us at Presbyterian SeniorCare Network will remember her philanthropic spirit and all of the contributions she made to our residents and team members.

Embracing Home Renovations When You’re Resistant to Change

February 4, 2020

How to overcome mental obstacles putting off an improvement
By Mindy Charski

Embarking on a home renovation is exciting for most of the couples Adam Mandel meets as owner of JRZ Construction, a design-and-build residential construction company in Dallas. Yet, multiple times a year, Mandel comes across resisters: people who don’t share their partners’ enthusiasm. Some balk at the expense or the disruption. But in other cases, it’s at least partly about a resistance to change.

“A lot of times people will say, ‘You know, I’ve been in this house for twenty or thirty years, and it works fine for me. So, what’s the point of making the change?’” Mandel says.

Actually, if you’re a reno resister, there may be good reasons to push through your opposition.

Reasons to Push Through Opposition to a Renovation

Updating your home could help increase its potential resale value. And some changes are necessary to make your home more livable. It’s no good when old grout lets water get behind shower walls, for instance. “You have to take care of this,” Mandel says. “It’s not a safe situation.”

“Change is innately anxiety producing and it’s important to identify, acknowledge and talk about the worry.”

If you’re putting off a renovation because you’re hesitant about making a home improvement, the following insights and advice might help you commit:

First off, recognize that it’s normal to resist change.

“Change is innately anxiety producing and it’s important to identify, acknowledge and talk about the worry,” says Dana Dorfman, a New York City psychotherapist and co-host of the podcast 2 Moms on The Couch.

Dealing With Your Emotions

While you may logically know it’s time for a renovation, your emotions may be getting the best of you. Acknowledge them. “Homes are symbolic representations of our life stages,” Dorfman says. “A renovation may reflect an upcoming stage about which there is inherent ambivalence.”

If you’re having mixed feelings about retiring and relocating, for example, you may not be rushing to do improvements that can help you sell your home faster.

It can be useful to jot down your worries and resistance. Since the brain is wired to protect people from pain and discomfort, it devises excuses for scenarios that could be problematic, Dorfman says.

Undeniably, paying for home improvements and living through the upheaval of a refresh can be stressful and uncomfortable. But irrational concerns can creep in too, Dorfman says — like thinking friends will be jealous of your new space and become less close. Identifying your apprehensions and putting them on paper can help you address them.

The Biggest Hurdle

The biggest hurdle for change is the “amorphous soup of variables and possibilities” it involves, says Nick Tasler, an organizational psychologist in Ponce, Puerto Rico. Renovations, after all, require a whirlwind of urgent decisions that can feel overwhelming.

“You need to zoom out and say, ‘What am I really trying to accomplish here and why?’” Tasler says.

Maybe you want to make changes to better age in place. Perhaps you want to modernize your kitchen so you’re not embarrassed when guests visit.

Says Tasler: “Once you get clear on [your goal], then it becomes much easier to say, ‘Now I understand the change better. I’m willing to do what I need to do to get out of my comfort zone and make it happen.’”

Help From Comforting Renovation Partners

Finding renovation partners you trust can also help get you over the hump.

Vicky Nave, principal designer at Avery Benjamin Interiors in Thousand Oaks, Calif., finds a large part of an interior designer’s job is counseling clients about a change they’ll create together and helping them feel confident the results will look beautiful. Nave looks with clients through design magazines, blogs and Pinterest to understand the design elements that excite them and build their comfort level about a project. She’s also careful not to overload clients with too many choices.

“By talking with my clients and understanding their design goals, I can guide them in the right direction at their own pace,” Nave says.

You might also want to start small. That’s an approach designer Lauren Fasolo of Ellce Designs in Naperville, Ill., sometimes uses with apprehensive clients.

Rather than renovating an entire first floor at the same time, for instance, she’ll concentrate on initially refreshing one area. “A lot of times, after they see it, they’re like, ‘Oh, now I get it,’” she says. “Then they’re more willing to move on together.”

Even just repainting, restaining wood floors or updating lighting can have a big impact on a room’s look.

Dealing With the Disruption

The commotion of a renovation project often requires adjustments to a daily routine. So, you may want to come up with plan to make it through the process.

To avoid the disruption of a four-day flooring job, Mandel says, one reluctant client and her husband went to a local hotel for a staycation. “They ended up having a great time,” he says, “and by the time she got back, the worst of it was done.”

By Mindy Charski

Mindy Charski is a Dallas-based business journalist, content writer and ghostwriter. She covers personal finance, marketing, small business and photography.

Years Caring for His Wife Transformed This Doctor’s View of Health Care

January 31, 2020

This Harvard professor reveals what he learned from the experience
By Judith Graham

Caring for someone with a serious illness stretches people spiritually and emotionally, often beyond what they might have thought possible.

Dr. Arthur Kleinman, a professor of psychiatry and anthropology at Harvard University, calls this “enduring the unendurable” in his recently published book, The Soul of Care: The Moral Education of a Husband and a Doctor.

The book describes Kleinman’s awakening to the realities of caregiving when his beloved wife, Joan, was diagnosed with a rare form of early Alzheimer’s disease that causes blindness as well as cognitive deterioration.

Although Kleinman’s specialty is studying how patients experience illness, he wasn’t prepared for the roller coaster of family caregiving. Each time he adapted to Joan’s changing condition, another setback would occur, setting off new crises and fueling uncertainty and stress.

During 11 years of caregiving until Joan’s death in 2011, Kleinman learned that no one who goes through this experience emerges unchanged. He became less self-centered, more compassionate and more aware of how the health care system fails to support family caregivers ― the backbone of the nation’s long-term care system.

Realities of Caregiving

I spoke with Kleinman in mid-November at a caregiving panel. His remarks below are edited for length and clarity.

About his book: “I wrote it for a specific reason. I had spent my whole career as an expert on care. I myself was a psychiatrist who worked with patients with chronic medical disorders, [such as] chronic pain, diabetes, heart disease and cancer. I thought I knew it all. A veil of ignorance was raised from my eyes by my experience as a primary family caregiver.

“What is that veil of ignorance about? It’s about recognizing just how difficult family care is for [people with] dementia and, not just dementia, but many other problems.”

Daily responsibilities: “Let’s say in the fifth year, what was it like? I would get Joan up around 6 a.m. and take her to the bathroom. I have to handle the toilet paper, wash her hands, dress her to work out, take her to the bath and bathe her.

“Our health care system (is focused on) entirely the wrong issues. Economics is not the most central aspect of care; it’s caregiving.”

“I would shampoo her hair, dry her, pick out her clothes [for the day]. After that, I would prepare breakfast. As she got increasingly agitated, [that] became difficult because I had to sometimes hold her hands [to] keep her from throwing things or getting up and hurting herself. Because she was blind, she couldn’t see where she was. And then I would help her eat ― usually, at the end, feeding her ― and then take her to a room where we would sit and listen quietly to music.

“Maybe six, seven years into this, I would just sit there and hold her hands. And even that became difficult. So, I would tell her stories of the past … our stories. [Editorial note: This is just the beginning of a day full of similar tasks.]

“I discovered early on that the ritualization of acts of caring ― the dressing, bathing, all these things ― is a way of habit formation that keeps you going.”

Challenging masculinity: “We had a great relationship, but it was asymmetrical. For thirty-six years, my wife took care of me. I was raised as a classical male in the 1940s. When I showed an interest in cooking, my grandmother said to me, ‘What are you, a sissy?’ I was a tough kid on New York [City] streets. I had the most unpromising beginnings to be a caregiver. And my wife slowly socialized me to a different kind of masculinity, to be able to care.

“[Pay family members for caregiving] and you’ll see more men do it. Go to Australia, for example, where there’s very good compensation for care, and you’re astonished at the number of men who are caring for children, who are caring for elderly, and the like.”

Asking for help: “I have a wide circle of friends and colleagues, and [after the book] many of them said they had never realized what was involved. Part of that was my fault. I had a lot of trouble asking for help. Actually, at one point, I so exhausted myself that my kids, who are great, said, ‘You really need assistance.’ And they stepped in, as did my mother, who at the time was in her nineties.

“So, I had a great system of care around me, but I [also] needed a home health aide to [help with Joan and] keep myself going. I found an Irish woman … and she was fabulous.”

Maintaining presence: “In spite of that, I found it extraordinarily difficult in terms of other elements of care, one of which is presence. To keep your liveliness, your love, the presence of who you are going while you’re doing all this work of caregiving ― it is extremely difficult and demanding, but it’s crucial.

“When people ask ‘Why do you do [this]?’ the answer of most family caregivers I’ve spoken to is ‘Well, it was there to do. It’s got to be done, [so] you do it.’”

“To keep your liveliness, your love, the presence of who you are while you’re doing all this work of caregiving — it’s extremely difficult and demanding, but it’s crucial.”

Learning about failure: “I was fortunate in life; I had a golden career. I have a personality that is like a bulldog, and when I start something, I finish it. But there’s no finishing care. Every one of us [family caregivers], if we’re honest, you fail at a certain point. The frustrations build, anger mounts, you control your anger so you don’t injure the person you’re caring for. But you’ve got to somehow handle it inside you.”

The soul of care: “I think what lies at the soul of care is a form of love. You will do everything you can for another because they mean so much to you. [But] it is also problematic, because we all have complex relationships and we’ve got other things going on in our lives.

“We endure, we learn how to endure, how to keep going. We’re marked, we’re injured, we’re wounded. We’re changed … [in] my case, for the better. If you had known me before my eleven years of care, you wouldn’t recognize me today. I was your classical hard-driving Harvard professor … as tough as any other professor at Harvard Medical School.

“I’ve redeemed myself through this experience, in a way.”

A call for change: “How do we strengthen caregiving? How do we do those things that will make it recognized as important as it is? It’s going to take a radical rethinking. Our health care system [is focused on] entirely the wrong issues. Economics is not the most central aspect of care; it’s caregiving.

“Do you know not a single one of the senior neurologists I went to with Joan who wanted to do everything diagnostically made the recommendation ‘You want to think about a home health aide now, even though you don’t need it right now. You have to look into how you’re going to reconfigure your house [for] someone who’s both blind and with dementia. [Or] a social worker is a great navigator of what the health care system is about. You want to take advantage of that.’

“So, this is where I believe that our whole health care system has got to be rethought, from the bottom up with attention to care at its core.”

(This article originally appeared on Kaiser Health News.)

By Judith Graham

Judith Graham is a contributing writer to Kaiser Health News and Next Avenue.

 
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