Reverse Magazine March 2023

Critical Transitions Wealth Advisors has a proven process to bring clarity and reduce potential mismanagement. As an advisory fiduciary, we offer advice in your family’s best interest in areas such as consolidating assets, investment management, navigating Social Security & Medicare, your role as Power of Attorney & Personal Representative, and planning for a terminal illness or permanent care diagnosis. Together we can create a plan!

Stephanie Vokral,

6.

LOOKING BEYOND RETIREMENT

A Medicare Q & A for those planning to work after age 65

TALKING WITH AGING PARENTS ABOUT THE FUTURE

Having those difficult conversations about money, health and final arrangements

SWEET SUCCESS

Strategies to help older loved ones live with — or avoid — diabetes

TECHNOLOGY FOR SENIORS

Balancing convenience and safety, for everyone's sanity

THE CRIPPLING COST OF LONG-TERM CARE

Facing the real possibility of a financial catastrophe

FIRST PERSON

A caregiver’s personal story

16. 19.

LEEZA’S CARE CONNECTION

Where caregivers go for care — and so much more

BOOK REVIEW

“Being Mortal” by Atul Gawande

22. 24.

HOSPICE CARE ISN’T A DEATH SENTENCE

It’s a caregiver’s best friend, especially if the patient isn’t dying

WHEN GRIEF COMES KNOCKING

Understanding a universal and healthy emotion 20.

FINDING THE RIGHT LEVEL OF CARE

Tips on how to decide among so many choices

ON THE COVER

Leeza Gibbons with her mother’s former care companion, Pat Watts

MANAGING EDITOR

Anna Gelbman Edmonds

DESIGN AND PRODUCTION

Kristina Parella

ASSISTANT EDITOR

Amy Stokes

CONTRIBUTING WRITERS

Karen Campbell

Megan Flowers

Leeza Gibbons

Earl Gregorich

Heather Leigh

Jeanne Reynolds

Melissa Sprouse Browne

Caroline Ward

Moving Forward in Reverse

During an editorial meeting for my magazine The F-Suite, a colleague suggested the topic of adult children caring for their parents, specifically focusing on the stressful aspects. From there, related topics bubbled up. Suddenly, someone piped up saying we should publish a specialty magazine covering all those topics and more. So, we did — and here it is!

Being the main caregiver for my mother during the last few years of her life was a rewarding experience, and it was very difficult. I made mistakes. I lost sleep, gained weight and cried many tears. Nevertheless, I’m confident that, with the help of my siblings, I provided my mom with the best care I could, and I know she trusted me. Our relationship changed drastically during those years. She and I were able to talk about the reversal of roles because I was making so many decisions in her daily life. I went to every medical appointment, purchased her clothes and hygiene products, monitored her diet, picked out her books and puzzles, advocated for her, made sure she got exercise and saw that her hair and nails were kept trimmed — all the same things she did for me when I was a child.

(Volume 1, No. 1)

Reverse Magazine is a bi-monthly publication published by The F-Suite, LLC. Please email Anna@ reversemagazine.us for advertising rates and information regarding mail subscriptions and purchase of bulk copies.

Copyright ©2023 The F-Suite, LLC. All rights reserved. Reproduction in whole or in part without permission is prohibited. The publisher is not responsible for the opinions or comments of the authors or the subject matter of advertisers. We welcome your comments and questions by email at info@thefsuite.com or mail to The F-Suite, LLC, 317 Bradford Lane, Columbia, SC 29223. Tel. (803) 216-1902

That was the easy part. Maybe we should have included an article titled “You Don’t Know What You Don’t Know” in this issue. I can say unequivocally that if I had to do it all again, I’d do many things differently from the start. By the time I (and my siblings) learned the legal, physical, financial and institutional ins and outs of caregiving, we’d already made mistakes. And it was either too late or very expensive and time consuming to correct them. The person who suffers the most through all that is the aging parent. It hurt me to see my mother increasingly confused and frustrated any time we made changes to her routine and accommodations.

The senior care industry is a huge machine with endless moving parts, many of which are regulated by local and state government agencies. Navigating Medicare, a chaotic healthcare system, senior living facility options and jumping through endless legal hoops is not for the faint of heart. COVID has complicated matters exponentially. Helpful information on every aspect of caregiving is desperately needed.

Reverse strives to provide credible and insightful information to those either embarking on the journey or continuing on the road of caring for an elderly parent. We wish you Godspeed and grace!

Sincerely,

Anna Gelbman Edmonds Publisher & Managing Editor

Looking Beyond Retirement

Answers to healthcare questions for those planning to work after age 65

By Caroline Ward

Age 65 used to be the “magic age” for retirement and receiving Medicare health insurance. However, many people today are working past 65 to accrue additional income to make retirement a more affordable option. If you are planning to work past 65, consider these points regarding your health insurance:

Does your company have more or less than 20 full-time employees?

Your company is only legally required to provide health insurance for employees age 65 and older if they have 20 or more fulltime employees.

When do you need to sign up for Medicare?

• If you WILL NOT receive group benefits, you need to sign up for Medicare Part A (hospital) and Part B (medical) when you turn 65. You also have the option to sign up for Medicare Part D (prescription drugs).

• If you WILL receive group benefits, you only need to sign up for Medicare Part A when you turn 65. You do not need to sign up for Parts B and D.

Will you contribute to a health savings account after 65?

If yes, you will need to delay signing up for Part A until you retire.

Will you receive Medicare penalties if you delay enrollment in Part A or B? No. At the date of your retirement, you have eight months to sign up for Medicare Parts A and B. However, you only have 63 days to sign up for Part D, so this has a major effect on your Medicare decisions.

What happens when you retire and lose group benefits?

• If your company offers a retiree group Medicare plan, you need to compare the retiree plan with your options on the private market. You may choose to stay with the retiree plan or purchase your own plan. Although, if you drop the retiree plan, you cannot get it back.

• If you choose a Medicare plan on the private market, you need to evaluate three options: (1) Original Medicare, with or without a drug plan; (2) Original Medicare plus a Medicare supplement, with or without a drug plan; (3) Medicare Advantage, which includes prescription drug coverage.

As you can see, Medicare is not a onesize-fits-all insurance plan. That’s why working with a professional is vitally important.

Caroline Ward is an independent senior insurance advisor. Learn more at AskCaroline.net

Talking with Aging Parents About the Future

By Megan Flowers

Families often spend time during casual get-togethers reminiscing and reliving fun experiences. But these times can also be used to talk together honestly about the future. Aging involves a host of questions and issues that many of us are uncomfortable facing. Procrastination will not make them go away, and there is no better time to address these issues than when families are all together.

One of the most complicated realities of aging is cognitive decline. As parents age or suffer illness, they frequently face periods of memory loss, confusion or changes in personality. These may be temporary, prolonged or permanent, depending on the circumstances. Check in with your loved ones, and pay attention to noticeable changes in appearance, lifestyle or behavior. Are they having trouble keeping up with things around the house? Are things out of place or unusually messy? Take note if one parent seems to cover for the other by finishing sentences or correcting lapses in memory. This can

Tackling difficult issues now makes things easier down the road

often be a sign of decline in cognitive ability.

Planning ahead for these issues can provide vital safety nets that will be needed when a crisis arises or when your loved one can no longer make decisions on their own. Legal authority to make decisions for another is vital. Generally, this is done in the form of a power of attorney. Power of attorney allows a trusted child, friend or family member to step into the shoes of an elderly person to help manage important affairs when he or she is unable to do so. Acting as power of attorney, an adult child can pay mom’s bills, deposit her checks, arrange for necessary care or do a host of other tasks that will arise. However, such plans must be made before your loved one is in a prolonged state of confusion or memory loss. Once cognitive decline has set in, it is more complicated and costlier to make the necessary legal arrangements to help a loved one in need.

The possibility of needing long-term care or relocation to a senior living facility is another difficult topic for many families. A good starting point is to simply ask your loved one their thoughts and feelings on long-term care. Cost is the biggest concern

for most families, and adult children are often in the dark about their parent’s financial situation and assets. Take the time to broach these topics and discuss the range of options for care. One is budgeting for in-home assistance for those who don’t need to relocate to a senior living facility but who need help with household chores, running errands or administering daily medications.

Finally, it’s important to talk about the “little” things adult children simply don’t know. Do their parents have long-term care insurance? Life insurance? What are the details of their Medicare plan? Do they have a prescription plan? Where are their important documents kept? Consider keeping a list of your parents’ current medications in case of emergency.

An open and earnest discussion among the family about aging and care planning is not only practical and necessary, it gives everyone involved peace of mind.

Megan Flowers is an elder law attorney at Gelbman Law in Charlottesville, Virginia, where she works on matters of estate and long-term care planning.

Tough Topics

It's not recommended that all these topics be tackled at once. An ongoing dialogue is encouraged so everybody knows what parents' wishes are, what's been pre-arranged and who will make what decisions if parents become incapacitated.

Do parents have an estate plan devised by a financial advisor or attorney?

Do parents have a durable power of attorney?

Do parents have (adequate) life insurance? Longterm care insurance?

Do parents have a current will, living will and advanced health care directive?

Where do parents keep legal documents, and are they accessible? Children should keep an updated list of parents' doctors and medications

Where do parents want to live if staying in the home is not possible?

Where will parents be laid to rest, and have arrangements been made?

Sweet Success

Strategies to help older loved ones live with — or avoid — diabetes

By Jeanne Reynolds

There’s no sugarcoating this truth: Diabetes is a growing problem in the U.S., especially among older adults. The Centers for Disease Control and Prevention (CDC) estimates 11.3% of us have diabetes now, and some experts say that number will nearly double to 20% by 2050, with older adults appearing to lead the way. The National Center for Biotechnology Information (NCBI) reports the prevalence of diabetes in older adults increased by 62% from 1997 to 2010, and 40% of the adult diabetic population is 65 or older.

Diabetes can contribute to a host of physical and mental problems for older adults, including heart disease, stroke, kidney disease, eye problems, nerve damage, cancer, Alzheimer’s disease and other cognitive impairment, chronic pain, functional limitations, frailty and unintentional weight loss. Then there’s the price tag: The NCBI estimated the direct medical costs (mostly due to hos-

pital stays) of diabetes care for older adults at $104 billion a year in 2012 — a number expected to triple in the next decade. And that doesn’t include the significant costs of private or informal caregiving.

“There’s going to be a huge jump in the amount of money spent for diabetes-related health care,” says Kay MacInnis, RDN, LD, a diabetes educator at Lexington Medical Center in South Carolina. “It’ll have a massive impact on the health care system.”

But there is a sweeter side to this story: If you’re helping care for an older adult, there are many steps you can take to reduce their risk of developing diabetes or to improve or preserve their health if diabetes is present — and they apply to you, too.

DIABETES TAKES MANY FORMS

Diabetes can sound like a catchall term for problems with glucose and insulin levels, but there are important differences in the types of diabetes.

People with type 1 diabetes don’t make any or enough insulin. It begins most often in

More Resources

The internet and local chapters of national organizations have a wealth of information about diabetes in the aging population and how to help your loved one:

American Diabetes Association (800) 342-2383

askada@diabetes.org www.diabetes.org

Centers for Disease Control and Prevention

800-232-4636

888-232-6348 (TTY) cdcinfo@cdc.gov www.cdc.gov

National Institute of Diabetes and Digestive and Kidney Diseases

800-860-8747

866-569-1162 (TTY) healthinfo@niddk.nih.gov www.niddk.nih.gov

National Institute on Aging

800-222-2225 (English & Spanish)

800-222-4225 (TTY) niaic@nia.nih.gov www.nia.nih.gov

children and young adults, so it’s sometimes referred to as juvenile-onset diabetes. Older adults can develop this type of diabetes, but it’s not common. Type 1 diabetes is much less common than type 2, affecting only 5 to10% of diabetes patients, according to the CDC.

People with type 2 diabetes don’t make or use insulin well. It’s most often diagnosed in middle-aged or older people, usually due to lifelong eating and lifestyle habits leading to being overweight or inactive or to having a family history of diabetes. Seniors are at a greater risk of developing diabetes because they’ve been exposed to sugar longer than younger generations, according to the website aging.com. Women with a history of gestational diabetes (a type of diabetes that develops during pregnancy) also have a greater chance of developing type 2 diabetes later in life.

In addition, millions of older Americans have prediabetes, reports the National Institute on Aging. Their glucose levels are higher than normal — but not high enough to be called diabetes — increasing their chances of developing type 2 diabetes and having a heart attack or stroke. CDC statistics show nearly half of Americans with prediabetes are 65 or older.

Still others have insulin resistance, meaning their bodies don’t respond normally to the insulin they make or get. That can lead to elevated blood glucose levels and, over time, to prediabetes and type 2 diabetes. Insulin resistance can be temporary or chronic and is treatable in some cases.

LOOK FOR THE SIGNS

Nearly a quarter of people with diabetes are undiagnosed, according to the CDC. That means many people don’t know they have it and are missing the opportunity to begin treatment and lifestyle changes as early as possible, while they’ll do the most good. Some symptoms can be dismissed by older adults (and their caregivers) as simply symptoms of “getting old,” or may develop so slowly they go unnoticed. Symptoms of type 2 diabetes include feeling tired, increased hunger or thirst, losing weight without trying, urinating often or blurred vision. Older adults may also get skin infections or heal slowly from cuts and bruises.

An annual physical usually includes a blood glucose test, but as MacInnis points out, “If you see the results creep up over time, take action.” Other ways to test for diabetes are the A1C test, fasting plasma glucose test or oral glucose tolerance test. A doctor may want to repeat one or more tests before making a diagnosis.

TREATING — AND “PRETREATING” — DIABETES

A diabetes diagnosis doesn’t automatically equate to an insulin prescription. “Insulin is one of the safest medications out there,” MacInnis says, “but there are so many great options and medications now.” Treatment plans for type 2 diabetes and prediabetes can also incorporate other oral medications, as well as healthy eating and exercise.

“Diabetes is a lifestyle disorder: It’s 80% lifestyle and 20% genes,” MacInnis says. “It’s related to inflammation caused by sugar and processed foods. Obesity trends are still ticking up, and we’re more sedentary than previous generations. Our diets include sweet tea, carbonated beverages, skipping

breakfast — one thing leads to another.” Caregivers, friends and family may unintentionally contribute to diabetes risks for older adults by bringing them sugary treats or convenient processed foods. And especially for older adults with mobility problems, it can be easy to make time together focused on food rather than other activities. But there are many steps MacInnis says you can take to help an older adult manage or prevent diabetes. Here are some tips she recommends, whether your loved one is living with you, independently or in a care facility:

• Bring healthy treats. “Try a fruit salad with lots of color, including fruit with skin or peel or whole berries. If that’s difficult for your loved one to eat, consider a vegetable soup with lots of colorful vegetables.”

• If you’re picking up a frozen meal at the grocery store, add a vegetable. “Even if it’s just a bagged salad, make sure it’s a bulky one with other vegeta-

MUSC HEALTH HOSPICE CARE

bles and fiber, not just iceberg lettuce.”

• Keep meal times consistent. Four to five hours apart is ideal.

• Quality is as important as quantity. “Keep food as close to natural as possible. Fresh or frozen is better than canned.”

• Help with grocery shopping. “Look for produce already cut up, such as sliced or matchstick carrots instead of whole, or small packages of a variety of frozen vegetables. Make it an outing and let your loved one have control.”

• Encourage more water consumption. “Water is a huge issue. A lot of people carry around a water bottle and say they drink all day, but they’re just sipping. I’ve seen blood sugar levels drop 100 points just by adding more water.”

• The more movement, the better. “It’s been said ‘sitting is the new cancer.’ Exercise is one of the best tools in the toolshed, but the least used. Movement drives down blood sugar for the next 12

to 24 hours. It can be very simple, even sitting in a chair or standing beside it for support. If they can walk, be sure to go at their pace, not yours.”

THINK ABOUT IT

In addition to the physical aspects of preventing or living with diabetes, experts say there’s an important mental component to consider. Older adults with diabetes are at higher risk for depression or cognitive impairment compared with others their age who don’t have diabetes, according to the National Institute on Aging. Because suffering from these conditions can make diabetes self-care more challenging, doctors sometimes recommend a screening for depression or cognitive problems for older adults diagnosed with diabetes.

It’s also important to focus on the positive, MacInnis advises. “When you have diabetes, it’s all about deprivation and what you can no longer have. Instead, I talk to people about what they can add to their lifestyle. Focus on making just a few small changes.”

MUSC Health Hospice has been serving patients with life-limiting illnesses in our Midlands communities since 1978. We are committed to providing compassionate quality care to our patients and their families through dedicated professionals who are always there.

To find out if you or a loved one qualifies for MUSC Health Hospice services, or have questions, contact us as 803-425-1182.

Technology for Seniors

IT convenience vs. IT safety and everyone's sanity

By Earl Gregorich

Technology is helpful, but what happens when smartphones and other mobile devices become a source of frustration or a safety risk for the seniors we care for? How do we protect them from scammers, while still giving them the technology that keeps us all connected and entertained? This can be a delicate balancing act.

Fraud targeting adults over age 50 amounted to over $3 billion in 2021, according to the FBI. The Federal Trade Commission estimates an annual increase in senior-related fraud of 47% in recent years. This fraud is conducted by phone and online, and there is no measure of the stress and anguish associated with it. To help protect against senior-related scams, we assembled the following tips to help you combat scammers.

SAFETY FIRST

The objective is to keep your loved one safe. There is no foolproof solution to guarantee they won’t become a victim. However, precautions help mitigate the risks. The following steps are listed from the most restrictive and secure to the easiest and least secure.

Internet Lockout: Apple and Android phones both have settings to disable cellular data and Wi-Fi access to the web. Google your device for instructions.

SECURITY SOFTWARE: Antivirus and malware detection can be installed or enabled on most devices. Family plans may allow caregivers to keep protections up to date remotely. Popular package providers are Norton, McAfee and Bitdefender.

CONTACT WHITE LISTING: Configure phones to only receive calls from numbers in the contact list. This stops fraud calls at the source. Using this setting may result in a complete block or silencing of ringtones for unknown numbers.

REMOVE FINANCIAL ACCESS: While it’s best to not connect banking apps to your loved one’s device, it may be needed in some cases. If you require banking abilities on a device, set up an account strictly for online use. Keep minimal funds in this account, and set up transaction notifications.

ENABLE SECURITY SETTINGS: You should turn on the device’s screen lock and, while you’re at it, enable remote shut-down and findmy-device settings in case it goes missing.

FLIP PHONES: Flip phones are much simpler and usually don’t accommodate services that can be problematic. However, they may not screen or stop inbound scam calls, which is the primary method fraudsters use with the elderly.

DEVICE CHECKS: This is only effective if you know what to look for. Make a checklist that includes the items outlined here, and test the device each time you visit your loved one. It may be painfully inconvenient, but taking the device to a dealer to walk you through the security settings might be a good start.

SANITY SECOND: DEVICE CONFIGURATION

You may think a device with one button to navigate everything is awesome, but it may be a nightmare to someone used to working with keyboards and keypads. Remember, the device is for your loved one, not you. Features and apps that you think are great may be confusing and difficult for the elderly. Keep things simple, and customize the device for your user. This minimizes “How do I?” phone calls and frustrations for everyone.

Work through the device settings to enhance safety, and turn off features that could cause anxiety or provide openings for fraudsters. Take screenshots of these settings and double-check them when you visit. Also, remove or hide unneeded or rarely-used apps. Less is more when it comes to app choices.

THIRD … HAVE THE “TECH TALK”

Listen to your loved one without assumption or projection of your beliefs for what is best. Ask questions about what their device will be used for and what features they prefer. Get an understanding of how knowledgeable your loved one is regarding fraud and scams. While educating them on what to avoid, it’s important to share your concerns without causing undue fear.

Taking their input into account, find reputable sources for cybersecurity information, and stay updated on common threats and defense methods. (See sidebar.) Then set up the device, and use it yourself for a while before giving it to them.

Listening to what is needed and setting up the device to accommodate specific needs will create a more comfortable atmosphere. It also ensures everyone is on the same page regarding the balance of security and usability. When you are both comfortable with the technology, it’s easier to discuss the latest threats and how to avoid them. And your loved one is more likely to ask for help should something go wrong.

Getting Help

The internet is full of resources on device security. You can also get help at local device retailers, and we recommend using a major carrier’s store. Online guidance should focus on reputable mainstream periodicals like PC Magazine, Consumer Reports and AARP. Government sites are also good resources. Here is a list of links to get you started:

Cellphone Guide for Seniors

aginginplace.org/cellphone-guidefor-seniors/

Phone Security for Seniors

www.verizon.com/personal/info/ digital-security/phone-security-forseniors

The Senior’s Guide to Online Safety connectsafely.org/seniors-guide-toonline-safety

Cybersecurity Awareness cisa.gov/publication/cisacybersecurity-awareness-programolder-american-resources

Improving Personal Cybersecurity ncoa.org/article/how-older-adultscan-improve-their-personal-cybersecurity

Staying Safe, Protecting Your Digital Life us.norton.com/blog/how-to#

The Crippling Cost of Long-term Care

ty over the next 30 years. What the average American doesn’t know is how costly it is to live in such communities, even at the lowest level of service and amenities offered.

The big problem is that only a small fraction of Americans who will need long-term care currently carry insurance coverage to help with the costs involved. Since 2008, there has been no increase in the 7.5 million Americans holding a long-term insurance policy, despite the ongoing and future growth of our aging population. Confusion or ignorance about long-term care and the lack of insurance means millions of Americans will experience financial disaster. What people fail to understand is that employer-provided health insurance does not cover long-term care, and that the Affordable Care Act (Obamacare), Medicare and Medicaid will not cover many of their needs.

By Anna Gelbman Edmonds

The largest living generation, the baby boomers, are now aged 55 to 75. Most are vibrantly independent and healthy, many are caring for their much elderly parents and some already need some level of care themselves.

The effects of COVID-19 on the current senior population clearly revealed just how critical quality long-term care is for this vulnerable and huge demographic. Long-term care is a blurry euphemism for anything from minor assistance with household chores to medical support.

Seniors (and their children) notice areas where help is needed as they crop up slowly, one by one: mom is no longer able to drive, a trip-and-fall incident or dad is becoming extremely forgetful. Small annoyances maybe, but all are the beginning of the deep dive into the need for long-term care, whether in-home, with family or in a senior living facility.

It’s estimated that 50% of seniors will at some point require some level of long-term care. We all see the senior retirement, assisted living, skilled nursing and dementia care facilities popping up like weeds in every community, with rooms just waiting to be filled to capaci-

Private long-term care insurers have bolted from the market in recent years, and no public option exists. In 2000, we had more than 100 long-term policy providers from which to choose. Today we have fewer than one dozen. Now, coupled with that problem, we’re in a pandemic that’s pulled back the curtain on the entire senior care crisis. All this is wrapped up in the nation’s failure to re-examine Medicare and the inefficient and costly healthcare and health insurance industries.

So, what can you do? First, don’t be lulled into thinking any of these trends affecting seniors will resolve themselves, because they won’t. Next, pick up the phone and call both your insurance agent and your financial advisor to talk about long-term care. Ask questions, take notes and then make good decisions based on the information they give you. Then, call, write or email your state and federal senators and congress people, demanding they begin acting on these issues.

Let’s talk about the real possibility of a financial catastrophe

"Don’t be lulled into thinking any of these trends affecting seniors will resolve themselves, because they won’t."

When the Caregiver Role Sneaks Up on You

C

By Earl Gregorich

aregiver. The responsibility of becoming one can hit you instantly. Or maybe it was expected. But, sometimes it just happens gradually without any sudden realization. No matter how it finds you, it usually begins with a phone call. Why the phone rings is of little consequence, since the reason merely determines the amount of responsibility about to impact you.

Our situation is mild, compared to many others. “Caregiver” was not a title used in our household, but when we paused and took in the situation, it occurred to us that we somehow fell into this role. The dynamics of our situation are manageable. Both sets of parents live over eight hours away and are adamant about staying where they are. Our siblings stepped up and took the lead in many ways. We simply woke up one morning and realized we’d merged with the caregiver team.

At the stage we are in, at the pace we are progressing, our responsibility is to provide support from afar and visit more often. This required changes in our work schedules and even in the type of work we do. Not all jobs allow one to drop everything (literally), drive eight hours and call in with no firm date of return. Our days are now filled with anxiety, especially when hearing the ringtone assigned to our parents’ numbers. Siblings we grew up with are taking on new, unfamiliar roles. Topics that used to make for casual conversation are more businesslike and emotionally charged. For the team members closer to the situation, stress and burnout are real and added sources of tension.

We are confused when our loved ones don’t want our help, but at this point in the journey, we consider it a good thing. Our parents’ defiance and will to fight are, in some strange way, encouraging. We are communicating, and they are engaging. We know it won’t always be that way. In our case, this is just the beginning of what we hope is a long conversation.

Caregiver. One day we woke up and became one. We were weeks into this new way of life before we even knew it had happened. We started making extra trips and adjusted career paths and life choices. We started packing go bags and studying flight schedules. However, for now, our responsibilities are light, and our support team is strong. We wish the same for those about to get the phone call and soon realize they, too, are caregivers.

Leeza's Care Connection

Where caregivers go for care — and so much more

By Leeza Gibbons

Wouldn't it be great if caring for someone you love gained you access to some elite club where membership is exclusive and desirable? What if being a caregiver gave you elevated status and respect? Well, that’s a fantasy! We all know not only is that NOT the case, but most often we’re drafted kicking, screaming and resisting into caregiving, certain our lives are coming to a sad and lonely place.

Like millions of others trying to make sense of their new caregiver identity, I've been there, looking down a long, dark road with no exit. That's why I created Leeza's Care Connection when my mom had Alzheimer's disease. As our family watched her begin to disappear from her own life, memory

Photos Courtesy Leeza's Care Connection

by memory, we each went to our respective corners to lick our wounds.

Regardless of one’s intelligence level, financial status or education level, such circumstances can render a person feeling helpless and hopeless. Leeza’s Care Connection became what we wished we'd had at the time: a place to been seen, supported and held up when everything seems to be falling down. I always say we are on loan to each other in the community, so we created a 501(c)(3), supported and funded entirely by sponsorships and donations in the Midlands. While I provided the seed money to get us going, we have been grateful that businesses, friends and neighbors quickly saw the value in what we were doing and wrapped us up in support.

With a sense of family, community and a path forward, we offer free services to care partners and their loved ones facing a chronic illness or disease. These services

I created Leeza's Care Connection 20 years ago. In my work today, I still see the following caregiving lessons in action every day:

1. Hit the reset button. Plan, prepare, research and get ready. You can't always anticipate where you're going next or what you'll need, but keep moving anyway, making sure to release and reset expectations along the way.

2. It's OK if you're not OK. It's time to walk away from that cape-wearing, tough-as-nails, I-can-do-it-by-myself version of yourself. Admitting you need help is courage in action.

3. Me first. Those who have been caring long-term know this is non-negotiable. Learn ways to nourish, replenish and refresh yourself. And NEVER apologize for doing those things.

4. Hang on to hope. Getting caught up in all the stuff that needs dealt with and managed can cause us to lose sight of how important it is to stay hopeful. We're not machines. We are feeling, caring, emotional humans who need to believe we'll get through it.

5. Burn your people-pleaser card You’re the one on the front lines, not the myriad of others weighing in on everything you do. Trying to please them only results in frustration, anxiety and compromised care for your loved one. Listen to well-meaning input, consider what’s best and then set your course — without apology. Use my mom’s advice: Show up, do your best, let go of the rest.

range from our education series and support groups to movement and art classes. We gather virtually and in person to remind our community that you can hold on to yourself even as you’re forced to let go of someone you love.

Peggy Jones and her mother, Phyllis, became familiar faces at our South Carolina center after Peggy began caring for her mom. "I felt welcomed and relieved to be able to get my mom involved in the activities, learn as much as I could about dementia and to have a safe place to voice my frustrations," said Peggy, who calls Leeza’s Care Connection her “comfort zone.”

Most of our guests tell similar stories of resilience and finding strength through vulnerability.

“I felt like I walked into a big hug,” said volunteer and caregiver Mary Ann Hutcheson, who helps provide care for her best friend. “What they do at Leeza’s Care Connection is extraordinary in a world that has almost forgotten what real giving and caring is all about.”

It's true. After all, “Care” is our middle name. We know that better care for caregivers creates better outcomes for care receivers, and that no one should walk the path alone. We connect our guests to resources, to each other and to their own courage and strength through three primary categories: education, empowerment and energy. We

also know many of those who are called to care don’t know where to begin and often become overwhelmed. That frustrates the process, so we begin to chip away at it by creating a sense of confidence and competence through education. We help with empowerment in many ways, but it all comes down to our programs that bolster a sense of community, validation and self-esteem. Built-up stress in the body creates mental and physical illness, and finding outlets to release it is essential. That’s the energy portion of our offerings, which can be anything from drum circles, to tai chi, to art, to humor. Caregiving is a marathon, not a sprint, so we make sure our guests have the energy to sustain themselves on the journey.

We are part of a movement focused on honoring the journey of all care partners. This means elevating the status of caring by creating a culture of caring, kindness, diversity and inclusion. Always seeking ways to be of service, we extend hope to those caregivers lost, angry, frustrated or afraid. They’re often running out of resources, strength and money — and sometimes even faith. When they fall apart, we help put them back together and back on track so they can breathe, believe and receive.

If you need us, we’re here.

For more information, visit LeezasCareConnection.org.

“Being Mortal: Medicine and What Matters in the End"

by Atul Gawande

AREVIEW BY HEATHER LEIGH

tul Gawande reflects in “Being Mortal” on how society can better cope with age-related frailty, serious illness and approaching death. Through interviews and stories, Gawande calls for a change in healthcare and clarifies this new way of thinking. Physicians and medical staff may find end-oflife conversations with patients and their families tough and uncomfortable. However, having them offers time to prepare for what is coming.

Gawande, himself a surgeon, brings attention to the much-needed shift in conversations so that focus is on aiding in the quality of life rather than using all means extending it. This shift helps the reader come to terms with the inevitability and reality of the body’s natural decline. Gawande’s thinking stems from his personal journey during his father’s decline and death — not as a surgeon but a son seeking answers and comfort. The doctors offered comments of unrealistic hope. Downplaying the truth about the measures available to provide comfort hindered the family’s discussion about death, prompting Gawande to ask his father, “How much are you willing to go through just to have a chance of living longer?”

This and similar questions are what families should be asking their ailing loved ones. How can physicians aid in comfort measures? Set expectations? Help define hope in the moment? Gawande reflects on how his experience exposed his ignorance as a physician facing mortality, giving false hope and denying patients and their families an opportunity to control their final days together.

Gawande discovers that difficult conversations give permission and power to those facing death. Being given choices on how to spend one’s final days is key for the peace and comfort of all involved.

by Melissa Sprouse Browne, founder of

Finding the Right Level of Care

Seniors have never had so many choices before, so how do you decide?

By Melissa Sprouse Browne

Nursing homes: the dreaded end no one ever wanted to see. Years of hearing your loved one say “Never put me in a nursing home” gives the proper amount of guilt to hold back from seeking care outside of the home.

Things have drastically changed. The nursing homes of old are no more. As our aging population has grown, so have the myriad choices in senior living and types of care. From

independent to assisted living, memory care to skilled care, opportunities exist along a full range of services for seniors to enjoy this special season of life.

While these broad categories may seem daunting, they exist to help make sure the appropriate assistance is available when needed. If circumstances change, the next level of care may be sought to keep safety and comfort at the forefront.

When you want or need to transition from home, knowing how to evaluate the choices is critical. The main categories you’ll encounter are independent, assisted, memory and skilled care. Having someone help you walk through the steps leading to the correct level is huge. In South Carolina, in the greater Columbia area, one such guide is Laura Glenn, the director of sales and marketing at The Pines Assisted Living in West Columbia.

Working in the senior care industry for the last 15 years, Glenn has the added experience of taking care of her own family members. “My role is to meet with families and

discuss if we are a right fit for each other for their mom, dad or loved one to move to assisted living,” she said. Educating families on the various aspects of senior care and sharing her expertise with the community is something she enjoys.

INDEPENDENT LIVING

Ideally, the journey begins at independent living. As you’d expect, independent living means that services to help with activities of daily living are not a part of the care — you’re on your own for everything. Independent living can mean you’re living in your original home. Or, it can mean you’re living in a congregate living situation, such as in an apartment building with other seniors. These typically include custodial services, such as housekeeping and meal preparation. Help from family members or professional caregivers can sometimes be enough to keep you in your own home. Many organizations provide nonmedical in-home care on an hourly or even daily basis.

ASSISTED LIVING

You’ll encounter several levels under the umbrella of assisted living. While these levels vary from community to community, you can generally expect that the more hands-on care you need, the higher the level and the greater the monthly expense.

The facility will assess the amount and frequency of assistance you need to see where you fit into the system.

“An assessment is based on a points system. We have a series of questions to see what the person can do on their own,” Glenn explained. “We encourage independence and understand the person is coming because they need services. We evaluate their abilities with dressing, medication, toileting, bathing — all those things. We offer assistance to that person, and our assessment is based on the frequency of that touch. If someone needs to be checked every hour, we will incorporate those details into the care plan.”

At The Pines, the care provided is framed into four different levels. “At level one, you’re pretty much independent; you

may just need help with a shower three or four times a week, or may need help getting to the dining room but are still able to drive,” Glenn said. “We realize that not everyone fits in the same box, so we tailor our approach to the individual.”

The medication list is an important part of the evaluation. “We see the senior in person, and the med list helps us determine a lot, based on the meds the doctor prescribes. We also ask them to demonstrate what they can do, whether it’s standing, pivoting, getting in a wheelchair on their own — or are we helping lift or transfer them? All of that gets incorporated into the care plan,” Glenn shared.

At level two, a person with failing memory may need a little redirecting. Staff may give reminders to come exercise in the courtyard or provide help with medications or showers. “The majority of our residents are at level one; some are level twos. We have a younger, more active population at The Pines who can age in place,” Glenn said.

Levels three and four require more assistance with more frequency. “The other scenario is someone with health concerns who doesn’t want to sit in the emergency room every night. A resident at a level three or four will have a reduced likelihood of emergency room visits with a nurse on site. At The Pines, we have three nurses on site who can determine if the person can be treated here or moved out for emergency care,” explained Glenn. In South Carolina, assisted living facilities are not required to have a nurse in-house.

Any major change can be challenging for a senior, but often moving to assisted living effects a positive change. “We see typically that someone improves over time once they're here,” Glenn said. “If they weren’t getting their meds on the right schedule, not eating properly, not socializing, all those items are incorporated into their care plan. Assisted living is the perfect culmination of those things they're missing when home alone. Now that they’re getting the right meds on schedule, being engaged, getting a shower, being active, sometimes they get better.”

MEMORY CARE

A person with cognitive impairment needs specialized care that can change as their abilities and understanding declines. Some but not all assisted living communities offer a special section for those with dementia, while others are dementia-specific communities that only admit residents with dementia. A hallmark of memory care is security. Wandering is a common behavior among people with dementia. You’ll want to ensure your loved one is safe and can’t suddenly leave the facility without assistance. The best dementia care takes into account the individual’s remaining abilities and allows them as much freedom and engagement as possible. If you tour a memory care community, look for an open floor plan without long, narrow hallways. Not being able to pass through a locked door often frustrates people with dementia, which leads to negative behaviors.

SKILLED CARE

In assisted living, residents must be able to feed themselves. If a resident has a colostomy bag or other medical device that can't be self-managed, they likely qualify for skilled care. The highest level of care facility, skilled care is what many would consider a nursing home. A person’s need for medical intervention on a continuous basis would require this level of care.

Seniors often graduate over time to higher levels of care, from independent to assisted to skilled. However, an intervening event such as a fall or other health emergency could permanently change one’s abilities to perform the activities of daily living and require an immediate level upgrade.

Finding the right solution means knowing what to look for in senior care. Understanding the different levels of care is the first step in making your loved one safe and happy. “I always tell people I want to be a resource. Whether we’re the right place or I help them find the right fit elsewhere, that’s my goal,” Glenn shared. “I didn’t know assisted living existed and wished I’d had a ‘me’ to navigate for my dad when he needed care. He could've had a lot more quality of life.”

Hospice Care Isn’t a Death Sentence

By Anna Gelbman Edmonds

When people hear the phrase hospice care, it literally rings like a death knell in their ears. However, when I learned why my mother was a candidate for hospice care and about all the benefits it offered us, I popped open a bottle of champagne. My life and hers improved dramatically once arrangements were made.

That’s because hospice care, contrary to popular belief, is not only for people who are expected to pass away within days or weeks. The goal of hospice care is to maintain or improve the quality of life for someone whose condition is unlikely to be cured. In my mother’s case, she had severe short-term memory loss and kidney function of 20% and declining. This condition affects all the other organs and would likely be the ultimate cause of her death, whether in three months or three years.

Ironically, it’s not at all unusual for some hospice patients to live longer than initially expected due to the improvement in their quality of life. The main focus is no longer on curing your senior, but keeping them comfortable and offering the family support. Hospice

It’s a caregiver’s best friend, especially if the patient isn’t dying

addresses all the medical issues of the patient and provides comfort and support to both the patient and family. Though my mother was the patient, I probably benefitted more from the service than she. I’ll explain that in a moment.

To determine eligibility for hospice, the patient is assessed by a doctor who certifies that the patient might not live beyond six months. The doctor isn’t saying they’ll definitely die within six months, only that the possibility exists. Eligible patients are re-evaluated every six months, and some are actually released because their health improves so much that they no longer qualify.

Hospice candidates are typically people in advanced stages of incurable illnesses or advanced dementia, or who are extremely frail. Hospice patients receive visits by the hospice doctor and nurse in their home or senior living facility, not a doctor’s office. What many people don’t realize is that hospice includes more than medical care. Other support includes:

• daily assistance with bathing and personal care tasks

• regular visits by a chaplain and/or social worker, if desired

• family and patient access to grief counseling

• 24/7 on-call service by hospice professionals

Both Medicare and the Veterans Administration cover the cost of hospice care. If your senior isn’t eligible for those federal benefits, check with his/her medical insurance provider.

Once my mother qualified for hospice, my caregiving duties and worries lessened dramatically. Her morning attendant let me know if Mom lacked any personal hygiene products or if she noticed a marked change in behavior. I no longer had to coordinate doctor appointments or transportation. The social worker and nurse reported to me regularly. I still visited my mother frequently, but more as a daughter than a caregiver. And that was lifechanging.

Maybe it will be for you, too. Ask your senior’s doctor or senior care facility manager about hospice care. It may not be necessary now, but make sure they know that it’s an option you’d like to consider in the future if circumstances warrant.

Hospice Pondering Points

You should ask a lot of questions when seeking hospice. These points will get you started.

Get references from both people you know and professionals in the field (hospitals, nursing homes, physicians, nurses). Anecdotal references won’t provide all the answers, but this is a starting point.

Check for Medicare certification, which is essential if the patient is a Medicare beneficiary.

Accreditation is not required, but if a hospice has it, a third party determined it provides a reasonable standard of care.

Ask what the hospice expects from family members. Is it consistent with what the family can do?

Facilities for inpatient care can vary. Visit the facilities to ensure that they are conveniently located and you’re comfortable with what they offer.

There should be a clear process for sharing family concerns with hospice staff to ensure they are addressed.

What are your general impressions at initial contact? What is your reaction to the people you talk to?

Grief support can vary widely among hospice providers, offering individual counseling, support groups, educational material and/or outreach letters.

When Grief Comes Knocking

GUnderstanding a universal and healthy emotion

By Karen Campbell

rieving is our natural response to loss. We are constantly tested by losing people, pets, jobs, homes, relationships, health — and simple things like car keys. No matter the gravity of the loss, grief comes knocking. How we meet it at the door makes all the difference.

In 1969, psychiatrist Elisabeth Kubler-Ross introduced the stages of grief (denial, anger, bargaining, depression and acceptance) based on her studies of terminally ill patients. Over time, these stages have been applied to general loss and negative life changes. We may experience all or none of them, and in any order. “There is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives,” Kubler-Ross once said.

My husband lost his job twice in five years due to downsizing. He was devastated, embarrassed, sick and devoid of bravado. He felt like a failure. What happened next is what mattered: He confronted the grief, polished his resume, hit the pavement and found employment. Eight years and many lessons later, he has tougher skin, and his health and self-esteem are intact.

My son called one night after an intramural football game: “Hi, Mom. I’m okay, but I have some bad news: I lost Grandpap’s cross.” His voice oozed sadness and guilt with traces of anger. I encouraged him to pray, rest and know that morning would bring light and a clear head. He didn’t sleep, set out early to retrace his steps and found the cross in the grass, shimmering in the sun. The relief in his voice and tears of joy ended a brief but full gamut of emotion.

Grief knocked on my door upon learning of my mom’s cancer diagnosis. When she passed

18 months later, I sank to my knees and sobbed. Within hours a strange calm swept over me. Life resumed, work consumed me and life’s distractions hijacked my mourning. Weeks later, and with a vengeance, deep bouts of sadness began to wake me at night and hit me while in church, at dinner and at work. The real grieving began, testing my resilience. I have learned there is no real timeline for grief.

Bereavement never really ends, though it does wane, and it is influenced by the strength of our attachment to the loved one who has passed or is terminally ill. Caregivers get a front row seat to these emotions. Experts say managing grief well means knowing that anything is normal. They suggest we maintain personal interaction and express our feelings, seek support and lean on family and friends. Praying, meditating, attending religious services, exercising and preparing for triggers like holidays and anniversaries is also encouraged.

Not dealing well with loss can disrupt physical health by causing fatigue, weight loss or gain, poor immunity and insomnia. Mishandling our grief interrupts normal life and relationships and can lead to serious and prolonged depression. Mental health professionals tell us that those feeling isolated, disconnected and unreceptive to support are more prone to clinical depression. For this group, professional treatment, therapy and medication can be helpful.

In her article “Change is Loss and Loss Requires Grief,” Licensed Professional Counselor Melinda Seley outlines that change, even in the best of circumstances, means unknowns and having to relearn something; it requires us to lose something and to realize we are not in control. All of this is healthy, but it does test our resilience.

I once read, “When things change inside you, things change around you.” That’s pretty powerful. In the Hootie & the Blowfish song “Change,” Darius Rucker’s buttery voice croons, “And I pile my expectations/ But winds of change come in and blow ’em down.” We can all relate to that. If we can adjust our sails to meet grief at the door when it knocks, if we allow ourselves to feel, perhaps our response to loss will become a test we can all pass.