When the Caregiver Is Sicker Than the Loved One

Caregiving is difficult, making it vital that caregivers focus on themselves at times

By Toula Wootan

 

caregiving

 

Have you ever asked someone you know who is caring for a loved one how they are, only to hear the standard response, ”Everything is fine, I’m doing well,” when you know that’s not really true?

To be honest, I understand that response. I’ve been there myself.

I am the primary caregiver for both of my parents. Two years ago, I was in the middle of a caregiving crisis for months. My parents were still living by themselves at home, but mom was hospitalized twice that year for high blood sugar — four times the normal level.

Dad was doing his best to care for her, but the stress of caring for someone with dementia coupled with other illnesses was wearing on him. He had a previous stroke, so I worried about his blood pressure. He called me frequently at work, exasperated, asking for help. Then he fell and hurt his hip. He was hospitalized for several days.

A Moment of Truth

As I was trying my best to give them the care they needed and still meet my work responsibilities, I realized that I, too, was suffering. The stress I was under caused me to have a careless accident; thankfully, the injury was minor. I had also missed several medical appointments of my own that year.

The accident was my wakeup call. I decided to take some of the advice I give caregivers all the time in my role as a radio show host for caregivers to “take care of yourself so that you can take care of your loved one.” (Too bad I had to experience this to realize that my words of encouragement were accurate.)

Caring for someone is an act of love. With the rapid aging of our population, it is a role that will touch all of our lives like no other social issue yet. Because we are all living longer, the caregiving years can last up to 20 years or more. It is not uncommon these days to encounter caregivers in their early 80s still caring for a parent.

The Emotional and Physical Cost of Caregiving

Caring for a family member often takes a tremendous toll on the health and well-being of the caregiver. Research bears out that many caregivers neglect their own health while caring for their loved one. It fact, studies show that caregivers are at a much higher risk than others for diabetes, depression, stroke and other illnesses.

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.

Those percentages alarm me. Why is this happening?

Putting Your Needs Second

I believe there are several factors at play. Many caregivers find it hard to carve out time for themselves, to go to their doctor or to other medical appointments. I’ve talked to so many who have told me, “Sometimes it’s just easier to ‘back burner’ my own health; I’ll take better care of myself when I’m no longer caring for my loved one.”

Let’s face it, when you’ve been to eight or nine  medical appointments in a month for your loved one, the idea of going to another, even for yourself, is sometimes just too much. (Yes, I’m guilty.)

When you’re working full time and caring for aging relatives, you ask yourself “How much more time can I take off from work?”

For many, caregiving is a 24/7 role, one that encompasses all aspects of their lives. For those over 70, spousal caregiving is most common. It is this group that often suffers the most.

‘Didn’t Know Where to Start Looking’

I recently talked to a 93-year-old man who had been caring for his wife for five years in their home, following her devastating stroke. He never went anywhere other than to her medical appointments or the grocery store. He had no outside assistance, and didn’t know where to start looking.  

Like many spouses caring for their loved ones, he had illnesses that he was ignoring. It was difficult, but I finally managed to get him to agree to have an outside agency come into the home and support him.  

Sadly, even with this assistance, he died before his wife. I often wonder if the outcome would have been different if he had been able to get help earlier, and find the time to care for himself.

So, how can we help caregivers who are not doing well themselves, yet are determined to stay the course and care for their loved ones no matter what?

Doctors: Listen to the Caregivers

My first recommendation is for doctors to listen to the voice of the caregiver when he or she brings a loved one in. The caregiver can provide valuable information that may not otherwise be apparent or that the patient may not choose to divulge.

Treatment should be a collaborative process, or to put it another way, “patient- and family- centered.” There should be open sharing of information and shared decision-making. The family should be supported.

Physicians and other health care professionals must look beyond the patient, to the caregiver. They should ask how the caregiver is doing and what the caregiver needs. Often, it’s just assumed that the caregiver chose this role and wants to continue in it. An assessment from the caregiver may reveal something entirely different.

Prepare Caregivers Better

Secondly, since most caregivers don’t have time to plan this role, but are thrust into it, it would be great to see hospitals and other health care organizations give proper instruction on how to care for their loved ones. In that way, they could be better prepared.

Lastly, I’d like to see preventative care for caregivers. It could be as simple as classes on how to cope with the stress of being a caregiver, emphasizing self-care and respite. There is an excellent opportunity for private, public and nonprofit institutions to engage in pro-active partnerships to address this need.

To quote Susan Reinhard with AARP Public Policy Institute, “We have to do something to address the needs of caregivers in our nation. If we don’t, we may be headed towards a new public health crisis.”

 

Toula Wootan headshot

Toula Wootan founded the Caregiver Coalition of Northeast Florida in 2008. The Caregiver Coalition is now comprised of 15 nonprofits that combine resources to provide free “Caring for the Caregiver“ conferences, an annual Caregiver Expo, “Caregiver Connections" newsletter, a robust website and more. She works closely with local, state and national organizations and with elder care professionals to continue this important work. Since 2010, Toula’s weekly radio show, “Toula’s Tips for Caregivers,” has offered advice to caregivers. It can be heard on I-Heart: https://www.iheart.com/show/53-Toulas-Tips-for-Caregivers/and http://www.toulastipsforcaregivers.com/. Toula is also the primary caregiver for her parents.

 

 

TOO MUCH OLD STUFF: HOW TO BUST THE CLUTTER

By Linda Abbit 

 

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It accumulates. Over the years, a combination of sentimental objects, things we’ll use one day, the vestiges of a former life and too many years of tax returns, newspaper clippings, little gifts we never used… the list goes on and the house fills up.

There are obvious reasons to declutter. Safety: clutter can trip us up. Efficiency: with declining eyesight, it gets hard to find things we use everyday. Focus: messy environments can make it hard to process information.

But the best reason to declutter comes from “Ms Fix-It” Jennifer Phelps in Houzz, the online resource for home design and organization:  “When your house is full of things from your past, things that only remind you of who you were, you very literally have no room for who you are now and who you are becoming.”

Why Is It So Hard to Do?

Whether you want to pare down the stuff in your home, garage, or even your computer storage, one problem is knowing where to start. The more we have, the more overwhelming it is.

A lot of what we hold on to is loaded with meaning. You might not even like that big ugly vase, but it was a gift from someone you lost touch with and you feel guilty.

For some of us, getting rid of stuff is actually painful. A recent Yale study found for some of us, parts of our brains react the same way to the anticipated loss of valued possessions as they do to the idea of quitting an addiction. A deep and gut-wrenching anxiety sets in.

 

How to Start Decluttering

Enter Sara Getzkin, President of Hands On! Organizing. As a professional organizer, Getzkin has been been on the TLC show “Hoarding: Buried Alive” five times – soon to be six. In the course of that work, she has come across everything from sex toys and firearms to marijuana brownies! One of Getzkin’s cutest finds was a dance card belonging to a client’s great aunt.

Getzkin has some tips from her ten years of experience as a Professional Organizer:

1. Don’t try to tackle too much at once. Getzkin tells her clients, “Let’s carve out three hours and see what we get done. Then you are going to rest and not even think about this.” Very few people can sustain focus for more than three hours and stopping before you get stuck means you can start again tomorrow feeling positive .

2. To start, Getzkin, recommends preparing three bags or boxes and labeling them Keep, Toss, and Sell/Donate. You might add a fourth box for things that need repairing, mending or dry cleaning, but don’t add more options than that. Put away what’s in your Keep pile at the end of the day and throw out what’s in your Toss pile. (We’ll tell you how to use online resources to sell or donate next week.)

3. Decide what you really use and consider what storage space is available. Be relentless in your decision-making and follow through.

4. Find local consignment stores to sell stuff that’s in great condition (do a Google search for [your city] + consignment stores) or sell your stuff online. Craigslist is a good option for selling locally; eBay is good for more valuable stuff. Stay tuned for a Senior Planet guide to selling and donating online, coming next week.

Paul Foreman, the creator of Mind Maps, gets deep into the decluttering problem with the fantastic map below. “As you move up a gear in de-cluttering you may hit some tough questions and need to battle some gremlins,” he writes. “Are you hanging on to the past? Do you need to move on? Whether you spend 20 years, 2 years, 2 months or 2 minutes the end result is the same – you have to let go. Deep down you know this – holding on, is simply delaying the inevitable.”

 moreclutter

Decluttering Challenges

  • Medications and medical apparatus  Medical needs vary as we age:  the medications and dosages change, but all too often we don’t throw away prior drug prescriptions. Time to get rid of them. Find out if your pharmacy has a take-back program; if not, figure that most prescription drugs can be put in the garbage. The FDA advises taking the pills out of the containers and mixing them with coffee grounds or vegetable peelings; then use a marker to black out the label – or scratch it out – before you put the container in the garbage. Some substances, such as narcotic pain relievers, should be flushed; check the label for instructions. Old crutches from 10 years ago? If you need crutches again, you’ll want to get a new and improved pair. Donate the ones you have.
  • Eyeglasses and hearing aids  We keep them because they were expensive purchases. “But they are not doing you any good sitting in the drawer if you’re not wearing them,” says Getzkin. Keep you last pair of glasses for use in an emergency, and recycle or donate the rest.
  • Nostalgic objects In Psychology Today, Jim Davies, Ph.D. recommends photographing some of those keepsakes you’ve been holding on to for years. “I take a picture, and save it in a folder called ‘nostalgia.’ Once I have this picture, I feel better about giving or throwing away the object, because part of why I wanted to save it was because I didn’t want to forget.”
  • Inherited Items  Things we inherit from parents or grandparents, can be hard to part with. “You feel like you are throwing away a person, but you’re not. You’re throwing away a possession of that person. Part of my job is to give you permission to let things go,” Getzkin explains. “In the old days when we didn’t have a lot of storage or big houses, we had one set of china and it was passed down from generation to generation,” she says. Nobody really needs multiple sets.
  • Clothing  On Houzz, Jennifer Phelps tackles a closet edit. Phelps recommends discarding clothes that make you feel bad about yourself: clothes from working days past; clothes you’ve “grown” out of. And she relates an exercise in editing she used with a client: She taped to the wall a picture of a jacket that the woman very much wanted to buy, and then hung each piece of clothing alongside it. Would her client choose this over the jacket? If there was no contest, it went in the giveaway pile.
  • Old gadgets  Jim Davies in Psychology Today refers to the “endowment effect”: he explains that “When we own something, we value it more than we would have been willing to pay for it when we didn’t have it.” In his decluttering, he asks himself if he would be willing to pay what a gadget is worth – say, $20 for his old point-and-shoot. If the answer is no, he sells or donates it.
  • Utensils On Oprah, Peter Walsh came up with the “cardboard box test” for utensils. You could use the same test for those pens and pencils that have been accumulating in cups and jars. Take all the utensils out of the drawer and put them in a cardboard box. For the next month, each time you use one, put it back in the drawer. At the end of the month, whatever you haven’t used, you don’t need.
  • Paperwork  We live in a world of digital files and virtual paperwork. Having a real paper trail is wise under certain circumstances, but we don’t need 30 years of financials. “There are some papers you need to hang on to for life, some you can relinquish after a set amount of time and some papers that you can throw out the same day they arrive” says Getzkin. Your attorney or accountant can tell you which papers fall into the different  categories. Making the effort a few minutes each day to sort and toss incoming paperwork keeps piles from forming. “Eighty percent of what we keep, we’ll never look at again,” Getzkin estimates. “It’s just taking up space in our homes.” Some paperwork can be scanned and saved on your hard drive.

 

Linda Abbit

Linda Abbit is a California-based freelance writer, editor, and eldercare content specialist.  She has a BS in Education from Adelphi University in New York and an MS in Education from Lesley College Graduate School in Boston.

What Your Parent Remembers (For Now, Anyway) Could Fill A Book

By Michael Levin

ML photo

Took my oldest daughter to London as a graduation present, and I gave some photos of the trip to my mom, who is 81 and suffers from a stroke and dementia.

            The next day, I called Mom just to say hi.

            “I don’t know who the young woman is in the photo,” my mom began, sounding happier than I had heard her in a long time, “but she’s so sweet, and the two of you look so happy together! It looks like you finally found the one!”

            Um, mom, that’s my daughter…I’m 40 years older than she is…and I’ve been married to that girl’s mother for almost 18 years…

            Of course, I didn’t say any of that.

            I just told her I agreed.

            It’s heartbreaking to witness the mental erosion of a loved one.

            It’s even harder to realize that all of her memories—and what are we if not our memories—are clicking off, one cluster of brain cells at a time.

            I have four children, ages 9 to 16.

            They are vaguely aware that the sweet old lady who sits immobile, watching old movies on her wide screen all day long, escaped Europe with her family in the horror of World War II.

            She was born in Belgium in 1936, and her family was on the run by the time she was three and a half.

            Her baby sister was born in occupied France in June, 1940.

            Two months later, the family escaped France into Franco’s Spain…in a hay wagon.

            My mother still remembers, or at least she did six months ago, fighter planes overhead as they made that dangerous and illegal crossing.

            From Barcelona they sailed to Havana.

            My grandfather bribed someone and they were able to stay in the infirmary instead of below deck.

            The family spent six years in Havana, initially living in an apartment where different families used the same beds during day and night shifts.

            By 1946, their papers were in order, and they made the 30-minute flight—their first—from Havana to Miami.

            My mother, then 10, was the family’s only English speaker.

            Just six months older than my youngest, she stepped up and answered the questions for the immigration and passport officers while her family waited, frightened, a few steps back.

            I don’t know how much of her own story she remembers today.

            Five years ago, I hired a freelance writer—I run a book ghostwriting company—to interview my mother and draft a short book about her early years, from Belgium to France to Cuba to New York.

            At the time, she was quite lucid and remembered events in great detail.

            We published her story as a short book.

            It cannot be found on Amazon and we’ve never sold a copy.

            Of course, that’s not the point.

            My children are growing in age and wisdom, even as my mother slips further into the fog of Alzheimer’s.

            It’s likely that the time will come, sooner than later, when she no longer recognizes us.

            But because we took the time to get her story down, we will always have it.

            Even as my mom loses the knowledge of who she is, my children will always know who they are and whose they are, thanks to her book.

            You don’t have to do it as a book – just get a recording app running on your smart phone and get the stories from your aging parent.

            Video may be most desirable, but it can feel like an intrusion, so audio alone may be best.

            Get the stories transcribed.  Get them down on paper.

            If you haven’t taken the time to interview, record, and one way or another capture the recollections of an aging loved one, this is truly the time.

            There may not be another chance. 

 

ML Headshot 2017 New York Times bestselling author Michael Levin runs BusinessGhost.com, America’s leading provider of ghostwritten books

I’M NOT AGING “WELL” — I’M GETTING OLD, GODDAMMIT

senior woman skiing

by ERICA MANFRED

 “I’m taking a page from Martin Luther King: ‘I have a dream that one day elders will live in a nation where they will not be judged by the tautness of their muscles but by the content of their character.'”

People used to think of growing old as part of the natural progression of life from birth to death. Not anymore. Now we go directly from middle age to you’re-just-as-old-as-you-feel.  “Old age” has been dropped from our vocabulary. “You’re not old!” people say when I describe myself that way. I’m 74 with an assortment of age-related ailments and a generous complement of sags and wrinkles. If I’m not old, who is?

Today, we’re supposed to age “well.” The term is fraught with expectations that I, for one, can’t meet. If I’d belonged to an earlier generation, I’d have been expected to retire to the proverbial rocking chair on the porch — but my age mates are not going gently into that good night. Older people in the 21st-century expect to be able to ski, play tennis, run marathons, bicycle, swing dance and even sky dive indefinitely. These days, if you slow down with age it’s your own fault. It means you’re not eating right, working out, taking the right supplements, thinking positive enough.

The Boomer generation was going to live fast and die young. We’re still living fast but we’re not dying young — so we live as fast as possible as a way to pretend that we’re not going to die at all. Unfortunately, those of us who are suffering the physical and mental ravages of age are an uncomfortable reminder to our more youthful peers that they, too, will one day grow old.

I am assailed daily with stories of elders who do amazing things at advanced ages — run marathons at 85, teach yoga at 90, bungee jump at 96. These stories are supposed to be inspiring. I find them depressing. I will never do any of those things. The rest of us old folks — those who actually suffer from common ailments of aging such as arthritis, heart disease or emphysema — feel left behind in the mad rush to never get old. I wind up wanting to stay home, because in this age-well-or-you’re-worthless world, struggling to keep up is humiliating.

Many people in their 70s do not have physical limitations. They can do everything they did at 50, and more power to them, but not being one of them makes me and a lot of other seniors feel like pariahs among our peers.

I have a 77-year-old friend with spinal stenosis, a common and painful ailment of older people. She is unstable on her feet and can’t get around without a walker. She is very sociable but refuses to go out because she’s ashamed to be seen with her walker. The ageism that makes her afraid to be seen with a walker winds up further marginalizing older people who are already segregated from the mainstream. It’s no wonder that loneliness is becoming an epidemic among seniors.

Even retirement communities advertise themselves as for the “active senior.” If you’re not active, you’d better find somewhere else to live.

It’s time that the media stop fishing for clicks with their stories of older people engaging in extreme sports and focus on celebrating seniors who find a way to live well despite physical limitations — people like Carmen Herrera, who sold her first painting at 89, or Barbara Beskin, who landed her dream job as an industrial designer in Silicon Valley at 90; or even seniors like Joe Bartley, who got bored with retirement and was thrilled to be hired as a waiter at a local diner at age 89.

It’s also about time we seniors stop judging each another by how “youthful” we act or look.

I’m taking a page from Martin Luther King: “I have a dream that one day elders will live in a nation where they will not be judged by the tautness of their muscles but by the content of their character.”

 

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Erica Manfred is a journalist, essayist and humorist who writes about everything from dentistry to divorce to fantasy fiction. 

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