How caregivers cope with stress

How caregivers cope with stress

Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.

Small treats

After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb

I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen

I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya

Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola

I cope with God, wine, and music!!! – Mayra

A nice long drive in my car 🚗 – Naomi

Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary

Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim

Yoga. Prayer. Chocolate. – Carol

Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron

Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan

Bubble bath+ buttermint tea! And shopping!🤣 – Jona

I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol

Hobbies

I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn

I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie

Writing. I hope to one day write a book on my experience as a caregiver. – Sara

Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey

Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy

Long hikes in the woods is the best way for me right now. – Penny

Pets

Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra

I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem

I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty

Sleep

I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine

Real time off

Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne

I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan


You can read all the responses on our Facebook page.

In Remote Idaho, A Tiny Facility Lights The Way For Stressed Rural Hospitals

In Remote Idaho, A Tiny Facility Lights The Way For Stressed Rural Hospitals

By Anna Gorman

Just before dusk on an evening in early March, Mimi Rosenkrance set to work on her spacious cattle ranch to vaccinate a calf. But the mother cow quickly decided that just wasn’t going to happen. She charged, all 1,000 pounds of her, knocking Rosenkrance over and repeatedly stomping on her. “That cow was trying to push me to China,” Rosenkrance recalls.

Dizzy and nauseated, with bruises spreading on both her legs and around her eye, Rosenkrance, 58, nearly passed out. Her son called 911 and an ambulance staffed by volunteers drove her to Lost Rivers Medical Center, a tiny, brick hospital nestled on the snowy hills above this remote town in central Idaho.

Lost Rivers has only one full-time doctor and its emergency room has just three beds — not much bigger than a summer camp infirmary. But here’s what happened to Rosenkrance in the first 90 minutes after she showed up: She got a CT scan to check for a brain injury, X-rays to look for broken bones, an IV to replenish her fluids and her ear sewn back together. The next morning, although the hospital has no pharmacist, she got a prescription for painkillers filled through a remote prescription service. It was the kind of full-service medical treatment that might be expected of a hospital in a much larger town.

Not so long ago, providing such high-level care seemed impossible at Lost Rivers. In fact, it looked as if there wouldn’t be a Lost Rivers at all. The 14-bed hospital serves all of Butte County, whose population of 2,501 (down from 2,893 in 2000) is spread over a territory half the size of Connecticut. Arco, the county’s largest town, has seen its population drop 16 percent since 2000, from 1,026 to 857 last year. “Bears outnumber people out here,” is how hospital CEO Brad Huerta puts it.

The medical center nearly shut its doors in 2013 due in large part to the declining population of the area it serves — almost becoming another statistic, another hospital to vanish from rural America. But then the hospital got a dramatic reboot with new management, led by Huerta, who secured financing to help pay for more advanced technology, upgraded facilities and expanded services. He also brought in more rotating specialists, started using telemedicine to connect the hospital to experts elsewhere and is now planning to open a surgery center and a long-term care rehabilitation wing. If Lost Rivers had closed, the alternative would have been hospitals in Idaho Falls or Pocatello, each more than an hour away across high-altitude prairie. Instead, “I don’t have to go across the desert for hardly anything,” said Rosenkrance, resting at the hospital the morning after the cow attack.

Rural hospitals are facing one of the great slow-moving crises in American health care. Across the U.S., they’ve been closing at a rate of about one per month since 2010 — a total of 78, or about 6 percent. About 14 percent of the U.S. population lives in rural counties, a proportion that has dropped as the number of urban dwellers grows. Declining populations mean a smaller base of patients and less revenue. And the hospitals are caught in a squeeze: Because many patients in the countryside are older and sicker, they require more intensive and often expensive care.

Faced with these dramatic economic and demographic pressures, however, some hospitals are surviving — even thriving — by taking advantage of some of the most cutting-edge trends in health care. They are experimenting with telemedicine, using remote monitors to track patients and purchasing high-tech equipment to perform scans and other types of exams. And because many face physician shortages, they are partnering with universities and increasingly relying on nurse practitioners, paramedics and others to deliver care. In parts of rural Oregon and Washington, veterans can get counseling through a tele-mental health program. Physicians in Iowa and North Dakota have access to virtual emergency room support.

At Lost Rivers — a dramatic rural health turnaround story — Huerta’s strategy was to use technology and innovation to offer the kind of high-quality medical care that would keep patients like Rosenkrance coming back. “Necessity is the mother of invention,” Huerta said. “Small hospitals like mine are always going to be under the gun. You have to get really creative.”

In the decades to come, America’s heartland and hinterlands will continue to be home to the people who run the country’s farms, forests and fisheries, and its wilder regions will continue to draw visitors who crave nature and recreation. And those people will need medical care. As a result, rural health researchers say hospitals like Lost Rivers are important test cases. They show that, despite daunting obstacles, rural America need not be left behind when it comes to health care. In fact, because they are being forced to innovate faster than their urban counterparts, they can provide a glimpse into the future of medicine.

“Being in a rural place does not preclude high-quality medicine,” said Tom Ricketts, senior policy fellow at the Sheps Center for Health Services Research at the University of North Carolina, Chapel Hill. “They are under a lot of pressure, but there are rural places you can point to as places you would say, ‘This is how things ought to be done.’”

Where Folks Wear ‘Multiple Hats’

It’s a Tuesday afternoon at Tara Parsons’ flower shop. She cleans up as she waits for customers — or for an emergency call. Parsons, a fourth-generation Arco resident, is not just the town florist; she is also the county coroner, a sheriff’s dispatcher and a volunteer emergency medical technician. This afternoon, she is on ambulance duty.

“We all wear multiple hats out here,” she said.

The town of Arco was founded in the 1870s as a junction for horse-drawn stagecoaches. Its quirky claim to fame is that in 1955, it became the first town in the world to be powered by nuclear energy, a credit to the Idaho National Laboratory down the road toward Idaho Falls. Every summer, to celebrate its history, the town puts on a celebration that features a rodeo and a softball tournament.

The streets are lined with shuttered and boarded-up storefronts, some with their signs still on display: the Galloping Goose, the Sawtooth Club. Residents talk nostalgically about the town’s heyday, when there were banks, a bowling alley and a movie theater, back when residents drove to Idaho Falls only twice a year, to get school supplies and do Christmas shopping.

Now, most of the businesses are gone. The town still has a lumber shop, a hardware store and a few auto garages. There’s also a bar, a gym and a dollar store. And around the corner there’s the local diner — Pickle’s Place — where people come day and night for fried pickles and biscuits and gravy.

Like so many other residents, Butte County clerk Shelly Shaffer has a personal connection to the hospital: Her mom worked there, her sister was born there, and she used to take her children there. Lost Rivers Medical Center — which also has two outpatient clinics — is one of the town’s biggest employers.

“It would be devastating if we didn’t have our hospital,” she said.

That was the direction they were headed. When Huerta, the CEO, arrived four years ago, he found the nearly 60-year-old hospital in disarray — dilapidated facilities, fearful employees, reluctant patients and a financial mess left behind by the former CEO. The hospital’s bank account held just $7,000 and morale was at an all-time low. “We were the poster child for everything that was wrong with rural health care,” he said. “It had been a slow, steady decline from neglect.”

Shannon Gamett, 28, a nurse at Lost Rivers, said paydays were nerve-wracking: “We would run as fast as we could to the bank to cash [a paycheck], or it might not clear.”

After borrowing money to pay his employees, Huerta campaigned to pass a $5.5 million bond for Lost Rivers. He asked locals if it was worth $5 a month — one six-pack of beer or two movie rentals — to keep the hospital running. They answered “yes” at the polls, and the hospital emerged from bankruptcy. Next, Huerta set his sights on overhauling the badly outmoded facilities. One of his top priorities was the laboratory, which he said looked like a high school science classroom from the 1950s.

He instituted a new philosophy: If it doesn’t happen at a “real” hospital, it doesn’t happen at Lost Rivers. That meant ending some local practices, nixing little things like letting staff members wear scrubs of any color they fancied, and big things, like allowing people to bring their horses in for X-rays. “I said, ‘I have no problem doing this, but you tell me what insurance the horse has,’” he recalled. “The practice stopped immediately.”

To bring in more revenue, he applied for grants and got the hospital a trauma center designation (the first level IV trauma center in Idaho) so it could get paid more for the care it was already providing. He saved money by inviting the town’s residents to help renovate clinic exam rooms and by moving the medical records to a cloud-based system that didn’t require more information technology employees.

Prognosis Unclear

Despite Huerta’s efforts, however, the long-term success of Lost Rivers is not guaranteed. “If you don’t have enough people to support a clinic or a hospital, it has no economic reason to be there,” said Ricketts, the Sheps Center fellow. “It just disappears.”

Arco and Butte County officials hope the local economy will get a boost from a planned expansion of Idaho National Laboratory, which conducts nuclear energy testing and research. Residents also are mounting a campaign to get the Craters of the Moon, a national monument in Butte County, designated as a national park.

“It would literally put us on the map,” county clerk Shaffer said.

But even if that happens, Huerta knows he can’t expect a big influx of new residents. Rural parts of the United States saw an absolute decline in population following the 2008 financial crisis, a trend that has since stabilized. But there is little or no growth. So Huerta has to concentrate on keeping the patients he has — and giving them a reason to keep coming. And it’s working: The hospital is now making a small profit and has some reserves on hand for future projects.

“If you are not offering the services, people are going to go somewhere else,” Huerta said. “And as medicine advances and reimbursement is still pegged to volume, you have to find ways to keep that existing population here.”

One big challenge for Lost Rivers and many other rural hospitals is that their patients tend to be older — and thus sicker and costlier to treat. People 65 and older account for about 18 percent of the rural population, compared with 12 percent in urban areas, according to the National Rural Health Association. An older patient base can strain hospitals because Medicare, the public insurance program for the elderly, doesn’t pay hospitals as well as private insurance does. Elderly patients also may need more intense care than small hospitals can provide.

Rural hospitals have a higher percentage of patients on Medicaid, the public insurance for poor people, which pays notoriously low rates to providers.

Some seniors move to Arco precisely because there is a hospital in town. But for others, what Lost Rivers offers simply isn’t enough.

Residents Ray Westfall, 82, and his wife, Winona, recently put their house on the market after deciding it was time to move to Utah, closer to family and more specialized health care. Westfall has neuropathy in his legs, which causes numbness most of the time. He gets around with a walker. Winona has dementia.

“We can get some care here at the local hospital, but mostly we have to travel to Idaho Falls,” he said.

Westfall is a regular at Parsons’ flower shop. On a recent Tuesday, he bought a bouquet for his wife — carnations, her favorite.

Parsons said many of the emergency calls she responds to are for older folks who’ve suffered strokes, fallen at home or are struggling to breathe. One 99-year-old woman she took to the hospital on this morning had fallen in her living room.

Parsons said she has known many of her patients for years, through her parents or grandparents. As they grow old and get sick, she picks them up in the ambulance and drives them to Lost Rivers.

“And before long, I’m doing their funeral flowers,” she said.

Telemedicine: A New Frontier

At first the Bengal Pharmacy, on the bottom floor of Lost Rivers Medical Center, looks like any other pharmacy, with racks of over-the-counter cold medications, bandages, reading glasses and medical supplies. Shelves of prescription medications sit behind the counter. But it has no pharmacist on site; instead, technicians and students from Idaho State University in Pocatello shuffle about, filling prescriptions.

Their supervisor is a pharmacist at the university, about 80 miles away, who checks their work remotely. Patients who want to talk to him go to a small private room with a phone and video link. The pharmacy is named for the university’s mascot.

For rural hospitals, telehealth can make otherwise faraway services accessible to people where they live, said Keith Mueller, director of the Center for Rural Health Policy Analysis at the University of Iowa. That can be critical, especially during the winter when snowstorms sometimes cut off access to rural towns.

“We can, in effect, bring the provider to the community without physically doing so,” Mueller said. “Even in urban areas, people want more and more convenience in how we receive our services. Here we are talking more about necessity.”

At Lost Rivers, patients can have telemedicine appointments with a psychiatrist. And doctors can get virtual guidance from specialists in trauma, emergency care and burns. But new technologies sometimes take getting used to. “When you lose that hometown community pharmacist, that human touch, when you turn it over to computers, that’s a concept that people have difficulty with,” said Martha Danz, who sits on the hospital’s board.

Leon Coon, 83, said the concept is a bit foreign to him. “I just don’t do that stuff,” said Coon, who works loading hay. “I’m a little old-fashioned.” Sipping coffee at the truck stop early on a Wednesday morning, Coon said he doesn’t even text, so he’s a bit wary of technology that puts him in touch with a pharmacist all the way in Pocatello. But then again, he said he doesn’t rely on the medical system much at all.

“Anytime you go to the doctor, it’s just like a mechanic,” he said. “They’re going to find something wrong. I feel good most of the time, so I just don’t go.”

Shane Rosenkrance, whose wife got trampled by the cow, said he remembers when there were five community drugstores in the valley. Now, he is grateful to have the one pharmacy — even if the pharmacist isn’t actually behind the counter. “To have health care, you have to have a pharmacy,” he said. “And through technology, they are able to do it.”

Telemedicine is hardly a panacea. The projects often depend on grants or government awards, because rural hospitals’ operating margins are slim. And some of the telemedicine and remote monitoring technologies require high-speed internet, which isn’t always reliable or cost-effective in rural areas.

“You can’t do home monitoring everywhere,” said Sally Buck, CEO of the National Rural Health Resource Center. “You can’t do telehealth everywhere.”

Telemedicine also may raise more questions than it answers for some patients, and even create a need for in-person follow-ups. Orie Browne, the medical director for Lost Rivers, said he tries to keep patients from having to travel. But if someone needs more advanced medical care — or a specialist that Lost Rivers doesn’t have — he will refer them to another hospital. The hospital has a helicopter pad, and patients with emergencies that can’t be handled at Lost Rivers can either be flown out by helicopter or transferred by ambulance.

“Ego is a dangerous thing,” he said. “If there is anyone who can do a better job, I’m going to get [my patients] there.”

Nevertheless, Huerta said, he hopes to expand telemedicine, including such services as oncology. Huerta recognizes that Lost Rivers doesn’t have the staff or the expertise to do it all. He believes the hospital should try to do more when it can, and refer out the rest.

“We aren’t trying to do brain surgery,” he said. “We’re not doing Level I trauma. But colonoscopies? Tele-oncology? People in rural areas get cancer too, and it’s demanding driving hours back from a chemotherapy session.”

Rounding Up Doctors

Browne started work at Lost Rivers one recent day in March, then drove 45 minutes to one of its outpatient clinics in Mackay, 26 miles away. One of his first patients was Elizabeth Galasso, 59, who was worried because her heart rate was racing.

“I was scared,” Galasso said, speaking with a hoarse voice as she sat hunched on the exam table. “I felt my heart pounding clear down into my stomach.”

An EKG showed her heart was beating normally. Browne told her it was likely a panic attack, but suggested a stress test just to make sure. He told her that her age, her smoking history and anxiety all put her at risk for heart disease.

“But I think things are going to be just fine,” he said. Galasso reached over and hugged him.

Browne, who took over as Lost Rivers’ medical director in 2015, said he was drawn to the outdoor activities in the area — and the variety of rural health care. He used to have a private practice in Idaho Falls and rotated into Lost Rivers for a week at a time. Now, he spends his days bouncing between the emergency room, the hospital inpatient beds and the primary care clinic. “That’s good for a person who gets bored easily,” he said.

Many doctors, however, don’t feel the same pull. Rural hospitals and clinics have long struggled to recruit doctors. In rural areas, there are roughly 13 physicians — of any kind — per 100,000 people, compared with 31 in urban areas, according to the National Rural Health Association.

Doctors and other medical providers can be enticed by programs that repay their school loans if they work in a rural area. Some medical schools have programs designed specifically for students who plan to practice in rural or underserved communities. Another way to make treatment more accessible in rural areas is to expand the responsibilities of nurse practitioners, physician assistants and even paramedics.

Lost Rivers relies on nurse practitioners and physician assistants to provide care for patients in the clinics and the hospital. In addition to Browne, the medical center has four part-time primary care physicians, some who live hours away and come in once a week. Various specialists, including a cardiologist and an orthopedist, also rotate into the medical center’s outpatient clinics about once a month. And an MRI machine gets driven to the hospital once a week.

Tim Tomlinson, a podiatrist who lives in Twin Falls and drives 100 miles to Arco once a week, spent a recent morning seeing a lineup of patients. One was a man who had to have a toe amputated after a horse stepped on his foot, another a diabetic who needed a skin graft checked on his foot.

Tomlinson said he’s gotten paid late before, and he has seen the hospital nearly shut down more than once. But he keeps coming because he has developed a practice — and he thinks its important patients have access to specialty care. Lost Rivers isn’t unique in its difficulties, he noted. “All those small towns are struggling as young people move out, leaving mostly old people,” he said. “That puts a drain on the hospitals.”

Patients are living longer with chronic diseases now, so the demand for elderly care is only going to increase. If not the rural clinics and hospitals, Tomlinson said, “who’s going to deliver it?”

Even with the decline in the nation’s rural population, many people are rooted in rural America because of family or because they like the outdoors and a slower pace of life. One of them is Gene Davies, who has lived in Arco more than 60 years, runs a mechanic shop straight out of a different era. Handwritten signs sit on a wooden chair next to the door: “Gone to Dr.” “Be back tomorrow.” “Hope to be back Monday.”

Davies said he appreciates the remoteness of the region. “I ain’t got no plans to go anywhere else,” he said. “I’ve seen enough of the other world. I don’t want it.”

Rosenkrance, the cattle farmer, said she’s not going anywhere, either. She’s been coming to the hospital since she was a child, when she ran through the halls while her father worked in the pharmacy. Now her husband teases her about having a standing reservation in the emergency room.

Just before discharging Rosenkrance, nurse Celeste Parson told her she needed to rest physically and mentally. The accident had left her with a concussion, a lacerated ear and a black eye. Then Parson issued her the most important instruction: Don’t do anything that could cause another blow to the head.

“We would really like you to rest up for at least a week,” Parson said. “But the doctor knows for you, two or three days is more realistic.”

As she grabbed an ice pack and her purse, Rosenkrance reflected on the importance of Lost Rivers for residents across the whole valley.

“This hospital is a big deal,” she said. “It’s saved a lot of lives.”


KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Identify the Sources of Caregiver Stress

Identify the Sources of Caregiver Stress

Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress.  Some family members may think you’re exaggerating. What’s all the fuss about?

“I’m not rushing you,” my husband declared. “Take your time.”

My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.

Knowing the sources of stress helps caregivers to cope with it.

Whether you’re a professional or family caregiver, grief is woven into your day.  I grieve for my disabled husband, who spends his days in a wheelchair. If I’m honest with myself, I wonder how long he will live. Author Eleanor Silverberg, in her book, Keeping It Together: How to Cope as a Family Caregiver without Losing Your Sanity, thinks grief is an integral part of caregiving.

“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she  writes. And grief takes many forms.

Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.

Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.

Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.

Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?

We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”

I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!

Geriatric ERs Reduce Stress, Medical Risks For Elderly Patients

Geriatric ERs Reduce Stress, Medical Risks For Elderly Patients

The Mount Sinai Hospital emergency room looks and sounds like hundreds of others across the country: Doctors rush through packed hallways; machines beep incessantly; paramedics wheel stretchers in as patients moan in pain.

“It’s like a war zone,” said physician assistant Emmy Cassagnol. “When it gets packed, it’s overwhelming. Our sickest patients are often our geriatric patients, and they get lost in the shuffle.”

But just on the other side of the wall is another, smaller emergency room designed specifically for those elderly patients.

Patients like Hattie Hill, who is 105 years old and still living at home. A caregiver brought her in one rainy day in late spring because she had a leg infection that wasn’t responding to antibiotics. Hill, who also has arthritis and a history of strokes, said she prefers the emergency room for seniors because she gets more attention.

“I don’t have to wait so long,” she said. “And it’s not so loud.”

Packed emergency rooms are unpleasant for everyone. But they can be dangerous for elderly patients, many of whom come in with multiple chronic diseases on top of a potentially life-threatening illness or injury.

“Who is going to suffer the most from these crowded conditions?” asked Ula Hwang, associate professor in the emergency medicine and geriatrics departments at the Mount Sinai School of Medicine. “It is going to be the older adult … the poor older patient with dementia lying in the stretcher with a brewing infection that is forgotten about because it’s crazy, chaotic and crowded.”

Seniors who come into traditional emergency rooms are frequently subjected to numerous and sometimes unnecessary tests and procedures, according to research and experts. They stay longer and their diagnoses are less accurate than younger patients. And they are more frequently admitted to the hospital by ER doctors overwhelmed by the constant influx of very sick patients.

“You’ve got this surge of more and more older adults coming to the emergency departments,” said Kevin Biese, co-director of geriatric emergency medicine at the University of North Carolina School of Medicine. “Yet there hasn’t necessarily been this recognition that [they need] different screening, different treatment and they are going to have different outcomes.”

Geriatric emergency rooms, which are slowly spreading across the country, provide seniors with more expertise from physicians, nurses and others trained specifically to diagnose and care for the elderly, researchers said.

The staff in these specialized ERs collaborate closely not only to treat the seniors’ immediate health problems but also to reduce their risk of confusion, bed sores and over-medication. Senior ERs are designed to be more quiet and tranquil.

Geriatric ERs have the potential to lower health care costs because staff can more carefully discern who needs to be admitted and who can be cared for outside of hospital walls, Hwang and others said. That tends to reduce hospitalizations among the elderly.

Mount Sinai, which opened its geriatric emergency room in 2012, is part of a nationwide effort to find a better way to treat elderly patients. The first geriatric ER opened in New Jersey in 2008, and now there are more than 100 such units nationwide.  Several others are being planned, including in California, North Carolina, Connecticut and Texas.

Geriatric ERs vary widely. Some are separate units with trained staff; others are merely sections within traditional emergency rooms with extra hearing aids and other senior supplies. But professional medical organizations have developed guidelines to standardize design, staffing and patient screening.

The boomlet in geriatric emergency rooms stems in part from an increase in older patients with complex conditions who are seeking care in regular ERs. That has caused some providers and hospitals to seek more effective and efficient ways to treat them.

About 20.4 million patients over the age of 65 were treated in emergency rooms in 2011, up from 15.9 million a decade earlier, according to a national hospital survey conducted by the Centers for Disease Control and Prevention. As the population ages, older patients are expected to make up an increasing share of ER patients.

The Affordable Care Act also has fueled the expansion of senior emergency rooms. The law assesses penalties when too many patients return to a hospital too soon after discharge. Facilities have tried to reduce readmissions in part by providing better emergency care and triage.

Now, that growth could continue as hospitals face additional pressure to provide more efficient and less costly care to their Medicare patients. The Centers for Medicare and Medicaid Services announced in January that within two years, half of all traditional Medicare payments will go to providers based on quality of care rather than quantity of services.

Emergency departments are the perfect places to make changes that could help control spending, because they are gateways between home and costly hospitalizations, Hwang said. About 60 percent of elderly patients who get hospitalized come through the emergency room, according to a 2013 Rand Corporation study. A quarter of those hospitalizations are preventable, according to one 2012 federal study.

“Hospitals that before didn’t think there was any need for this are saying, ‘Can you help us create a geriatric ED?’” Hwang said.

Hospitals also may view specialized emergency departments as a marketing tool to reach the growing elderly population.

The geriatric emergency room at Mount Sinai is set up differently than traditional emergency rooms. It has thicker mattresses to help reduce the chance of bed sores, raised toilet seats, hand rails in the hallways and reduced-noise curtains.

The department is allotted 20 beds, but the main hospital sometimes steals them for other patients. That leaves some older ER patients waiting in the hallway.

Over a two-day period in May, dozens of older patients were treated for falls, dizziness, severe pain and shortness of breath.

John Fornieri, 80, came in after falling on his floor at home. Fornieri, an artist with arthritis and a heart condition, said he nearly lost consciousness. An x-ray showed he had broken a hip.

Fornieri said he was grateful that the geriatric emergency room staff was trained to care for the elderly. “Seniors need a different kind of attention,” he said. “We can’t see and we can’t hear like we used to. We can’t even talk the same.”

Denise Nassisi, a physician who runs the geriatric ER, said her patients are at greater risk of falling, medication errors and infections than younger patients. Seemingly routine injuries can have devastating effects. Broken arms, for example, can make it difficult for elderly people to care for themselves.

Many also have dementia or other cognitive impairments that make it harder to get an accurate account of their medical history and the reason for their ER visit, she said. About half of the patients arrive unaccompanied by relatives or caregivers.

In the past, Nassisi said, doctors frequently just admitted the patients, leaving it to the hospital staff to do a more complete workup. But now, Nassisi and her team of social workers, therapists, nurses and others try to screen, diagnose and treat patients more thoroughly in the ER, she said.

Part of their job is to determine whether older patients can be safely discharged. That means they aren’t automatically admitted to the hospital, which would raise their risk of confusion and loss of independence. “We are trying to change the culture of just admitting,” Nassisi said.

A patient doesn’t need a clean bill of health to be discharged. One 81-year-old patient came in for a toothache but also had a long list of illnesses: coronary artery disease, chronic pulmonary disease, arthritis, high blood pressure, prediabetes and high cholesterol. She was released with pain medication, antibiotics and an appointment with a surgeon.

Another patient, who was 83 and had high blood pressure, anxiety and cancer, had fallen in her kitchen. She, too, was discharged after staff ensured she could walk on her own and had help at home.

As providers determine where the patients should be treated, they also try to prevent them from becoming delirious, developing additional problems or taking potentially harmful medications.

Physician assistant Jaclyn Schefkind evaluated Hill, the 105-year-old patient.

“How are you doing?”

“Bad,” Hill said, wincing in pain.

Schefkind looked at Hill’s leg, red and swollen. She said they were going to get her some stronger antibiotics and something to relieve the pain.

“Let’s start with Tylenol,” Schefkind said. “I don’t want to give you something too strong because it’s not safe when you’re older.”

Shortly afterward, the team decided the best place to admit Hill so doctors could get her infection under control. A nurse pulled Hill’s blanket up to her chin, packed up her belongings and rolled her through the door toward the main hospital.

This story was reported while participating in a fellowship supported by New America Media, the Gerontological Society of America and The Commonwealth Fund.

KHN’s coverage of aging and long-term care issues is supported by a grant from The SCAN Foundation, and its coverage of late life and geriatric care is supported by The John A. Hartford Foundation.

By Anna Gorman

Featured image: Ponpirun / Shutterstock.com

Simple, stress-busting tips for seniors & caregivers

Simple, stress-busting tips for seniors & caregivers

Caregiving for your loved ones is exhausting- both mentally and physically, as well as time-consuming. But the reward of satisfaction that comes with caregiving is incomparable and unmeasurable. As parents age, they lose control over their mobility, and face challenges with activities of daily living sometimes due to a physical or mental disability.

If you are the caregiver or want to hire a caregiver, firstly assess your parent’s needs, arrange for medical care and associated services, cover transport to medical or therapist appointments and co-coordinate related issues. That means – caregivers need and should take advantage of all the help and support one can get.

Stress can be harmful to a caregiver’s and senior’s physical and mental health, and can lead to physical ailments, chronic disease, cognitive decline, as well as depression and anxiety. Most elderly people prefer to remain in their homes as they age. By taking steps to ensure that your loved ones are safe and well taken care of at home, are socially connected and are involved in activities that keep them occupied, you can play a vital role in boosting your loved one’s mental health.  

Here are some ways in which caretakers and family members can aid in senior care:

Delegate responsibilities

Work as a team, and delegate tasks to other family members if you are the caregiver of your aged parents, so that you get valuable insights into what needs to be done. Be realistic about who, how and when a member is ready to take up responsibilities, keeping emergency situations in mind, and recognize someone must in charge.

Recognizing the signs of stress

Common signs of stress in seniors include changes in eating habits-reduced appetite, changes in sleep patterns, memory issues, frequent illness, and social withdrawal. Take steps to help reduce stress to improve their mental and physical well-being.

Bridge the generation gap

Encourage seniors to participate in community activities that bring generations together, or plan a family get together so that grandchildren can spend quality time with their elders and also gain from their experience.

Get involved in activities that allow for creative expression

Encourage seniors to get creative, which is both engaging and mentally stimulating. Yoga, painting classes, physical fitness class, religious gatherings, brain games, or engaging in social work can all be beneficial for seniors.

Make home modifications to improve accessibility and safety

Challenges in movement, gait and other physical disabilities can restrict adult mobility. Make your home safe and more accessible to seniors by installing safety devices.

Plan shared meal times with friends and family

Sharing meals with family creates time for bonding, sharing stories, and provides a greater sense of belonging. Arrange for periodic family and friend’s dinners at someone’s home or at a restaurant to help keep socially connected.

Consider pet adoption for companionship

Pets, especially furry friends are often used as therapy to provide stress-reduction benefits, lifting seniors’ moods and loneliness.

Make use of technology

The use of technology has eased caregiving chores and worries. There are devices that can check your parent’s vital signs electronically, remind a person to take pills, help locate a person who has wandered from home and mobile phone apps provides patients and caregivers with a valuable feedback loop.

Caring for the caregiver

Taking care of caregiver (or yourself) is important so that you can keep up with other demands of your own life. Juggling with the demands of caregiving can take a toll on your health hence maintaining a healthy diet, getting enough sleep, and finding time for exercise can be helpful. Find ways to reduce stress by practicing meditation, pursuing hobbies that are relaxing like gardening, reading, listening to music etc. Be socially active to avoid isolation and depression.


By Henry Kingston

Henry Kingston is a passionate Health blogger, Loves writing as it’s his obsession. He has written on various topics like health care, non-medical home care for the elderly and about different other aspects of life. Follow @Henrykingston30 for more updates.

Why is caregiving stressful?

Why is caregiving stressful?

Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?

Lack of help

By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.   

Endless tasks

My husband’s aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.  

Financial worries

Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.

Medical tests

Waiting for the results of medical tests can be nerve-wracking. Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.  

Anticipatory grief

Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.

Referral and aftercare

After being hospitalized for eight months my husband was released to my care. He was home a year and then referred to physical therapy. When therapists had done all they could, he was referred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.

“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages in Caregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.


 

Harriet is the author of numerous books, including Affirmations for Family Caregivers.

The science of stress

The science of stress

Does this sound familiar?


Image source: Fix.com by Rick Aroroa.

 

Are you worried about the toll stress is taking on your life?

Caregivers aren’t usually able to address the cause of stress, but we can control how we react to it.

Cut stress in 15-minutes with these mindfulness techniques

Cut stress in 15-minutes with these mindfulness techniques

Mindfulness has ancient religious roots, but today it’s become a largely secular practice that’s been demonstrated to relieve stress, improve attention and memory, and reduce blood pressure.


Source: Fix.com. View the original post.

Nicola Brown

Nicola Brown is passionate about travel, food, digital media, and psychology. An award-winning writer and communication consultant, she is owner and principal of Think Forward Communication and Editor-in-chief at AnewTraveller.com

3 ways to get rid of stress – no judgements!

3 ways to get rid of stress – no judgements!

Among the lists of things that are common to humans, stress is one of them. We have all gotten stressed out at one point or the other; even babies feel stressed. I do three things to relieve stress depending on the nature of the stress, and the time and convenience I have.

Dancing

Dancing is one of things I do to relieve stress when I am at home, the location is convenient. It could be as simple as swaying to a slow rhythm or dancing to a pop song. I am not a very good dancer, but it doesn’t matter, I am not doing it to become a professional. I find dancing really helps relieve my stress. Sometimes I stand in front of a mirror to watch myself dance, I give myself little tasks like how many new dance moves I can invent or the different ways I could move my body. Seeing the different bizarre dance moves I come up with makes me laugh and before I know it, I’m not so stressed anymore. Other times, I play the song in my head without listening to it and just shake my body however I want, I make funny faces while dancing and just think of how people will laugh if they should see me right then, it makes me laugh even more. Dancing is a great remedy for relieving stress, especially if you are a goofy dancer like me, it works if you’re good at it too.

Talk it out…to myself

The other thing I do to relieve stress is talk about it to myself. Now I don’t want to look crazy talking to myself in public, not that I don’t do it sometimes, but I send myself text messages instead. Or write in the little notepad app on my android phone. It’s like having a friend you tell everything to the moment it happens, but when I actually think of ranting to my friend every single time I’m stressed, I also think of losing a friendship, so I rant to myself instead. I text myself short messages, it’s like checking on myself, I receive the messages and I respond. I use the notepad when I have a lot to say, I just keep on writing and writing till I’m sure I have fully vented. This works best when I’m on the train or in any sitting position, I just take out my phone and write about the issue. I also find it helps me put things into perspectives, for example I have found solutions to problems that give me stress by writing about it. Each thought I’m trying to write or text takes a while to process and within those little moments, things become clearer, it’s either I solve the problem or I just feel better about it. One day, I was on the train for two hours and I felt like I have really written a lot on my notepad app, so I decided to transfer it to Microsoft Word on my computer, just to see how much I had written, and I found that I had written five pages worth of materials about the situation, I was amazed and that alone made me feel great!

Daydream

Lastly, I daydream when I am stressed. I could be home or in public, but I am careful not to miss my stop while daydreaming on the train and I’m careful not to burn my food while daydreaming at home. There are other hazards I try to avoid while daydreaming, so generally, I daydream while laying on my bed or watching television, it’s safer that way. Usually, I would create characters my head and put them in my situation, rather than put myself in my daydreams. I would then think of happy stress-free ways in which my characters are resolving the situation or simply magically getting out of it. It makes me feel better to think of other people that might be facing the same issue, I don’t feel so alone and it’s just good to think of the fact that there might be a way for the issue to be resolved realistically or magically. Therefore daydreaming helps me in that sense. Sometimes I put myself in the daydreams and think of the farthest thing from the situation that is stressing me. This is what most people would do, it helps a lot too.

 

There are many unique ways in which people relieve stress, it might have become a habit or routine that we just do automatically without even thinking about it, but if we really think about it, we’d find we have our own individual ways of relieving stress. It could be universal too, it just means the method is so good, other people are using it.

How do you keep stress from getting you down?

Adrienne plays Words With Friends, Jonah plays pool, Ed works out (of course!), Harriet writes… share your favorite stress buster in the comments below or on the forum.

How I used billiards to cope with my stress and anxiety

How I used billiards to cope with my stress and anxiety

From a very young age I’ve valued the sacredness of being alone.

As a self-identified introvert I learned early that I function best when I’m able to steal away time for myself to recharge and gather my thoughts. I had the usual childhood stresses you could expect of any awkward middle schooler and the added instability growing up in a divorced family: constantly jostled between two homes. Amidst all the flux around me, I found solace in a practice and place that was entirely my own. At 13, I took up the game of pocket billiards (or pool in it’s more common day usage). My interest in the game wasn’t peaked by the usual connotations of seedy back room hustlers, cigarettes, whiskey and high stakes gambling, I found in the game purity, comfort and a safe place to cultivate my curious mind.

Pool was my escape and refuge from all the stresses and insecurities I wrestled with growing up.Jonah

I found beauty in the myriad of shots that lay before me every time I chalked my cue and stepped to the table. The table bed, the lay of the balls after the break, it was a place where I knew I could resolve the disarray before me, weaving my way in and out of clusters of balls with the most basic of tools: the power of my mind to conceive of the shots and my body to execute each careful and precise stroke.

As I grew through high school, I turned to the game more and more as a respite to clear my head from everything that felt hard, overwhelming or disappointing. I was lucky to have a Boys and Girls Club located right across the street from my Dad’s house. Even on my most busy days, spending 45 minutes as a study break to get on a table, was exactly what I needed to put everything that was cluttering my thoughts on hold. Somehow in the midst of shifting my gaze and mental focus to my practice drills, I was also letting my subconscious take over, mollifying all the worry and anxiety that was ready to detail me. Pool became a sort of social anxiety medicine for myself. I stepped out of my crazed environment, and took hold of something that I had a firm grasp of that I wanted to explore deeper.

I began to claim pool as an almost spiritual like practice.

My family and peers began to recognize the unique relationship I formed with the game. It was a breeding ground for deep self-investigation and a remedy or coping tool for the most difficult times in my life. I found time for competition too as I honed my skills, finding a mentor at 16 and going on to qualify and compete in the junior national 9 ball championships two years later. The benefits though of the game have always come back around to caring for my mind.

The benefits of discovering an outlet to manage overwhelming times in my life have been tremendous.

I’ve dealt with the sadness and disappointments of breakups and deaths, anxiety attacks and depression. Having learned now what it takes to be a caregiver, I’ve begun muse and reflect on the pool practice that I discovered so long ago because it’s proven to be a rock that I can continue to return to again and again.

Ways caregivers can cope with stress

As a caregiver, have you been stressed lately? In this video, PhysEd focuses on defining stress and techniques on how to deal with it. PhysEd emphasizes that exercising is the key to cope with anxiety, stress, and depression. PhysEd suggests that performing aerobic exercise for about thirty minutes a day can make a big difference. PhysEd also review questions that caregivers may be concerned about, such as, who will take care of a loved one if something happens to a caregiver? Lastly, it is always best to maintain a positive mindset as a caregiver.

Send out an SOS when you feel stressed

Send out an SOS when you feel stressed

At the beginning of your caregiving journey things were pretty simple. You provided a comfortable bed for your loved one, did the laundry, made medical and dental appointments, fixed nutritious meals, provided taxi service, and daily companionship. By itself, each task is simple, but life can change simple things to complex ones.

Your loved one may get a cold and be bedridden for days. She or he may develop a second chronic disease. A sudden toothache can change caregiving plans in a flash. Already short on sleep, you may become cranky, sleep deprived, and discouraged, so discouraged you want to send out an SOS distress call, the international signal for distress. While other caregivers are willing to help you, there are steps you can take to lower your stress.

Go to bed at the same time.

This recommendation comes from sleep experts and, though you may not be able to follow it every night, it is a worthy goal. Going to bed at the same time helps to program your body clock and expect sleep at that time. A good night’s sleep helps to prepare you for the next day.

Eat regularly and eat right.

Tempted as you may be to eat on the run, this isn’t good for digestion or overall health. Sugary snacks give you a temporary burst of energy, but this burst fizzles quickly. A wiser step is to keep healthy snacks – carrot stocks, apple wedges, and grapes – on hand when you need to munch on something. Almonds and walnuts may also quell your hunger.

Discuss thorny issues.

Diana B. Denholm, PhD, LMHC, offers this advice in her book, The Caregiving Wife’s Handbook. “Even in households with the best communication, some issues are daunting to raise,” she writes. Not discussing issues leads to stress build-up, according to Denholm. Her advice: answer questions yourself, prepare for conversations, use communication tools, set a discussion date, prepare yourself emotionally, and “create understandings.”

Stay physically active.

Several years ago, when my husband’s aorta dissected for the first time, I was so stressed I could hardly make conversation. He was hospitalized for days and I visited him every day. After the visit, I went to the athletic club and walked on a treadmill. A staff member recognized me and asked about my husband. I summarized the situation and she replied, “I love it when people use exercise to cope with stress.”

Schedule daily “Me Time.”

Writing is my special time. What is yours? Doing something for yourself each day renews your spirit and your energy. Your “Me Time” can be working on a hobby, reading, or going to a museum. While you’re caring for a loved one you need to care for you.

Care for your spirit.

You may do this with meditation, prayer, reading spiritual and religious books, attending church services, and volunteering in your community. In her book, Passages in Caregiving, author Gail Sheehy asks caregivers to explore and affirm spirituality. “Believers of all faiths can find solace in their own creeds and rituals,” she writes. “But even nonbelievers, faced with existential issues, may find that talking with a trained spiritual counselor . . . awakens feelings of compassion and communion with all humans facing the same issues.”

Connect with other caregivers.

You may also care for your spirit and yourself by logging into The Caregiver Space website regularly, reading the blogs, and posting blogs of your own. You are not alone. Thousands of caregivers are ready and willing to answer your distress call. Don’t feel guilty about asking for help. You are not a failure, you are a realist – a dedicated, loving caregiver adapting to life. We are in the caregiving trenches together, and can support and learn from one another.


What does caregiving feel like?

What does caregiving feel like?

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Is there a better term for caregiver burden?

Is there a better term for caregiver burden?

You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.

I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.

Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?


I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.

Jerry



It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.

My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.

I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.

Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.

Mimi


How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!

Ashley


As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.

Teresa


There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)

Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.

I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.

Sylvia



I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.

Donna


It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.

Kim


I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.

I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.

Sherelyn



It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.

Diane


I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.

My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.

I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.

If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.

Genie


My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.

Linda


I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”

My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.

Kellie


Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.

And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.

Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.

Jeananne


It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.

Michaela


You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.

Penny


 

How to Help Parents Stay at Home Longer

How to Help Parents Stay at Home Longer

As aging parents creep past retirement age and into their 70s and 80s, adult children are faced with the same conundrum: how can they enable their mothers and fathers to stay in their homes longer, rather than send their loved one to a retirement home or similar facility?

According to the AARP, 30 million households provide care for an adult over the age of 50, and that number is expected to double by 2040. Failing to plan ahead now could cost tens or even hundreds of thousands of dollars, not to mention precious time, comfort, and dignity. Take the following tips to heart so you can create a caregiving strategy for your loved ones that will keep them living how they want for as long as possible.

Starting Out

No one wants to have the care discussion with their parents, many of whom want to maintain their independence. Nonetheless, in order to avoid costly, embarrassing, and potentially fatal consequences, this necessary conversation must begin with honesty and compassion.

Work Together

Effective caregiving plans include family members, close family friends, and other loved ones; they also designate a single “team leader” or point person who facilitates discussions and keeps communication forthcoming. Remember not to make any decision unilaterally. Apart from creating negative emotions, legal consequences may follow if the parent disputes the child’s action.

You may want to consider hiring someone to help with this planning. A geriatric care manager can assist your family with this.

Make a List, Check It Twice

Create checklists for personal information, home maintenance, health, finances, and transportation. These checklists should include all essential information, any necessary phone numbers, the location of documents or other important paperwork, and a division of labor. Allow multiple people — including your parents themselves — to divvy responsibilities where appropriate to ensure that no one person feels the full burden of caregiving.

On the topic of lists, good protocol calls for creating what’s known as a Vial of L.I.F.E. (Lifesaving Information for Emergencies) checklist. Be sure it includes hospital preferences, allergies, medical conditions, insurance information, and emergency contacts. This list can prove essential information in critical situations if the parent cannot respond or otherwise provide the necessary details.

Invaluable Resources

There are organizations available to handle questions about elder care, such as the AARP, or your local government. The Eldercare Locator can provide a variety of services in your neighborhood, and the official Medicare website will inform on free or reduced-cost healthcare offerings.

Should you choose to hire an in-home care provider, there are additional things you want to consider to make sure your loved one is best cared for.

The Power Is Yours

One of the most important and immediate tasks to complete when planning your loved one’s transition plan is designating a power of attorney and arranging for decision-making processes to occur in the event of incapacity.

The documents that must be created are the Durable Power of Attorney for Health Care — which you probably know as a “living will” — as well as a Physician’s Order for Life-Sustaining Treatment (POLST), the Durable Power of Attorney for Asset Management (or Finance), and the will itself.

  • The powers of attorney provide for a trusted person like a child to make legal and health care decisions for a loved one who is physically unable.
  • The POLST replaces a Do Not Resuscitate directive and allows individuals to decide whether or not emergency responders and other medical professionals should provide certain treatments.
  • A will establishes how one’s assets and estate will be distributed. It’s quite possible your loved one already has a will in place.

Many families will also want to create a living trust, which places the control of an estate’s assets with a legal entity. Both of these allow for assets to bypass legal probate, which can be a lengthy and stressful process.

Make Use of Technology

Technology has made it easier for families to anticipate and ameliorate concerns for elderly family members. Try utilizing these techniques to provide convenient care for your loved one.

1. Home Delivery

Amazon Prime or similar home delivery services are fantastic ways to ensure that household goods never run out. Paper products, incontinence products, hygiene items and toiletries, cleaning supplies, and even some dry goods can be delivered right to the doorstep in just a day or two. A “wish list” can be created to provide a handy source for the necessary items, and family members can order off the list and pay directly, circumventing any complicating factors.

2. A Pre-Paid and Pre-Programmed Phone

Gone are the days of leafing through books filled with chicken scratch handwriting, trying to find the right phone number. Buy an inexpensive phone and pre-program essential phone numbers with simple, easy-to-understand labels. For example, emergency services, doctors, family members, and neighbors can be programmed, saving valuable time in a critical situation. Keep it simple so you can teach your loved one how to operate the device.

3. Keep Pills on Lockdown

Many senior citizens take multiple pills a day, and forgetting dosages or mixing medicines can be a fatal hazard to the elderly. Even though most pill containers are labeled, aging parents become easily confused; these containers are also unsafe for visiting children. Buying an automatic, lockable pill dispenser means medicines are tamper-proof and only accessible when needed. Many of these also alert the parent (or caregiver) when pills are running low to make re-ordering easier.

4. Keep Information Managed and Centralized

Google Drive has an assortment of invaluable, accessible, and free tools to organize, manage, and share important materials within a family. Living wills, power of attorney documents, medication lists, pharmacy prescriptions, home security system passwords, and other important lists and information can be accessed by multiple family members. Google has downloadable apps that allow this data to be retrieved on mobile phones, convenient for trips to the pharmacy, doctor, or attorney.

Other Tips

A caregiver is essential for handling much of the mail delivered to the home of an elderly family member. The generation going through these life changes often relies on physical mail, instead of email, but may find it increasingly difficult to organize all they receive. Designate someone to sort important bills and other financially important items from the catalogs, magazines, and junk mail received on a daily basis. Another option is to have the important mail, such as information from banks and brokerage accounts, forwarded to the physical address of a trusted family member or power of attorney.

One out of three people over the age of 65 will experience a fall, which is the leading cause of serious injury among seniors. Purchase a monitoring system that has a medical alert button can be invaluable. It will alert emergency responders in the event of a major fall or other injury. Some come with buttons that can be worn on the body for easy accessibility, and others offer two-way communication to keep the fallen person on the line while medical assistance arrives. Consider also purchasing grab bars and benches in potentially hazardous areas, like bathrooms, foyers, and steps.

And finally, seniors with dementia are prone to wandering off. If this is a concern you have for your loved one, consider purchasing an inexpensive door chime to ring when the front door is opened. This will alert others in the house before he or she can get very far.

What steps can you take this week to create a caregiving plan for your parents? Let us know in the comments section.


Kathleen Webb co-founded HomeWork Solutions in 1993 to provide payroll and tax services to families employing household workers. Kathy has extensive experience preparing ‘nanny tax’ payroll taxes. She is the author of numerous articles on this topic and has been featured in the Wall Street Journal, Kiplinger’s Personal Finance, and the Congressional Quarterly. She also consulted with Senate staffers in the drafting of the 1994 Nanny Tax Law.

Is becoming a caregiver a choice?

Is becoming a caregiver a choice?

Becoming a caregiver just happened

I was 23, had a five year old and a 2 month old. My mother was diagnosed with stage IV colon cancer, and her “husband” decided he didn’t want to clean up crap, and I was already an “expert”. Sadly, she passed away 2 months later, and her “husband” left before her funeral. Look ahead 30 years later, and it was my turn at stage II colon cancer, and my two girls were thrust into being my caregivers. My oldest had three little ones under 10, including a newborn. My hope is that the pattern doesn’t continue. But … if it does, I know my grand daughters will pull their sleeves up and take care of their mom, too. – Joyce

It just happened, my sister asked if I wanted to quit my job to take care of mom and I said yes. I had 5 great years with her before she passed. 😇 – Terry

I went to visit my mother after I graduated high school and her caregiver said “oh thank god you’re here” and left and never came back!! So I got thrown into the role and did it for 10 years!! – Koren

It happened but i am thankful because no one would’ve took as good of care of them as me. God bless the staff at their nursing home. – Stacey

Just happened as my grandmother got financially destroyed by her youngest child/son! Her place was so in ruins & she was fallin fast in her health dementia/alzheimer’s! Its been a constant uphill battle not only with having to redo her home, but taking care of her & her health! Its 6am to midnight daily! I agree, we are so tired, my wife is now by my side through this journey! Never give up! 😥☝🏽🙏🏽☝🏽❤️ – Duane

My 26 year old daughter requires 24/7 care now due to Muscular Dystrophy. She does have nurses, but I am also a care giver for her. I had to give up my career. I love her more than anything in the world – but I will be honest – I am tired. I am 63, went through breast cancer treatment two years ago. I can’t afford the medical coverage or the medications. I have about $8000 worth of dental work that needs to be done. I took care of both of my parents until they passed. I have taken care of everyone through the years and not having any brothers or sisters – I have no one to take care of me. Yep. I am tired. – Debi

I was 25 newly married and my mother was getting lost driving to the same job she had for 20 years. 3 years later I’m sitting here frustrated I can’t get the stupid railing together from her falling out of bed. She doesn’t even know I’m her daughter these days. – Shanna

It just happened for me, when my husband had an accident and lost his job and went into severe depression. Neither of us asked for it. We don’t really want it now, either, but we have learned to accept. We are some of the lucky ones, as we are doing things that we love. Hubby potters in his garden, and in his shed making things. I do some sewing, making things for family and others. But, oh my, the years have taken their toll. Hubby’s physical health has taken a battering, and my physical and mental health has too……after all the stress of having to make some very big decisions on my own, which was new to me. We are coming out the other side, not sure of what the future will be for us, yet. Hubby is nearly retiring age, but I do hope his mental health continues to improve. – June

It just happened, I was a friend and saw someone needed help. I think God puts people in our lives for many different reasons and this must be the reason I’m there. – Mary

In my case, it just happened. I’m blessed that I am able to stay full time with my dad which enables him to stay in his home. My mother is in a nursing home and we visit daily. – Marie

An old roommate suggested I try in home care and that was 3 years ago. Now I’m HCA certified working towards CNA. – Jean

My son was born with a rare genetic disease; and now he is 22 years old and he is living at home and I was awarded the privilege to be his full time caregiver. – Brenda

It just happened. My husband had 2 strokes one week apart. I wasn’t prepared. – Tanya

It just happened….although frustrating at times, I wouldn’t have it any other way. Blessed to still have all these moments with my mom. – Penny

At a early age I had to take care of my little brother ,then my great Grandma, just over the years I became a CNA and Caregiver. – Anna

My husband became a wounded veteran. Life happens. We don’t choose for illness, disability, or old age to remove ability to daily living activities. It just happened to all of us. – Mary

When I got married and spoke my vows “In sickness and in health for richer or poorer until death do us part”. It’s been 8 years since my Bill’s illness and 5.5 years since he passed away. I had no help and held down my full-time job in the process and I was his primary caregiver and I’d do it all over again if I had to. – Lucy

It just happened! I did work as a caregiver and companion for the elderly about 11 years ago. Here I am doing it for my husband, and soon my mother. – Donna

My daughter was fell ill five years and was undiagnosed two of the five years. We found she had a rare genetic syndrome. She was only 13-1/2 at the time. Normal child until then. Something came and took her in the night…it seems. Sad, we try all the time to help her come back to us. But it is as if she is missing and everyone called off looking for her because she is rare and in a league of her own. I must cry every single day. The amount of daily grief is almost unbearable. But even worse is knowing how much she has lost. How much she suffers. How very hopeless the future looks. We just keep moving forward and praying for answers. Praying for her to recover. Praying for her not to suffer. It’s not as if I can say she lead a long happy life…ugh. This is her story and she is my hero. I pray God gives me the strength to continue walking with her until we get back her life. – Faith

It just naturally happened and was such a blessing. It allowed me to have more time with my best friend. Even on the hardest days, it helped me grow. Then God chose him to go to heaven. This is much harder now not being one. – Christy

Just happened found out my son had muscular dystrophy at 5 but our lives changed most at 9 when he lost the ability to walk. And now he is 20 and full time care. But I wouldn’t change a thing. This world could not handle my boy on his feet the place would be on fire. His wheels keep him grounded. – Erika

Just happened when hubby got cancer and now terminal. Then Mom got sick, too, and lives with us. So I have two now. – Cathleen

It happened when my husband was diagnosed with Alzheimers 4 years ago. We don’t have any kids so I am the one who is here for him. – Lynne

It just happened when my husband’s dementia was diagnosed and got worse. I love him and would do anything for him “till death do us part”. – Jenny

Caregiving just happened. I was 12 when my mom had her first massive heart attack and open heart surgery. When I was 18 I became a live in caregiver for a lady and lived with her almost 7yrs. Afterwards I became a live in for another lady for almost 4yrs. I just went from one person to the next leaving no space between patients and began caring for another woman for 2 1/2 and am currently a live in since Jan for another lady. This just seems to be my life’s purpose. I’m not married and have no children just a long list of “lil old lady loves” and wouldn’t know what to do if my life didn’t revolve around caring for someone. – Cameo

Just happen this time, my mother-in-law had a stroke, we moved in with her to take care of her, she now is in stage 3-4 dementia. I have been a caregiver 3 other times in my life to family members. – Diane

It just happened slowly. My husband stated to decline and I was there. 20 years later I am still taking care of him and trying to work part time. Not how we pictured our “Golden Years”. – MaryBeth

It just happened, hubby had a stroke July 2015, I didn’t even think about it, it was a given that I would give up my career to care for him, no way was I putting him in a home, hospital. Staff and social worker said I was “MAD” but I married him in sickness and in health, till death do us part! It’s hard at times but love him with all my heart! – Pauline

Becoming a caregiver was a choice

My husband and I made the choice to take care of his mom. She passed this past Dec. We are now helping out with my mom. You just do what you know is the right thing to do! – Linda

I decided to care for my mom. It was a difficult process but it was the greatest gift I gave myself. – Leuqar

Both I chose to marry my husband in a wheelchair, I chose to be a foster mom to possible special needs child and is getting more complex days before his adoption where we commit to be his forever home. – Kirsten

I made the decision to marry my husband, my prince, my best friend. Knowing that I would have to take care of him. Never occurred to me how much work it would be. Some days I’m physically and mentally and spiritually drained. But I made my vow. – Stephanie

I decided! I gave up nursing school to be the voice and the grunt of the people! I am a helper and always will be! – Michelle

I was an only child, who cared for her parents as they aged, while working full time in a high stress career, managing three daughters and helping in their lives, and married to my hubby, who already had parkinson’s. my parents passed, 5 years apart, while my hubby’s health deteriorated. he had a triple bypass and ablation (MAZE) procedure; later, a deep brain stimulator, shoulder surgery, etc. i retired early, 3 1/2 years ago to care for him. he was no longer able to do his own meds (things kept getting missed or screwed up), and getting his own meals (even after i prepped them) was too much for him. since then, he’s been diagnosed with “mild to moderate” dementia, probably from his parkinson’s disease. that explains much of the losses we’ve seen in his abilities. so, it “just happened”, but this part was anticipated. some days i think his disease is killing me faster than it is him, but we just keep marching on. – Marilyn

I was blessed 21 years ago with the very house next door to the one I grew up in. My Dad, Mom,& Grandmother still lived there. My grandmother then needed round the clock care and I stepped in because I knew it was hard on my mom with her own health problems but she helped where she could. I took care of her to the day she died. I took on a job caring for a woman who was a bit difficult for anyone else but she took up to me real quick, she was 103 at the time and was my dearest friend, I adopted her as my grandma and we were 2 peas in a pod, she passed away right before Christmas last year at the age of 105, I miss her. Then my parents and sister needed more and more care as their health deteriorated, my sister passed away last year on 2/18/2016 which was my other sisters birthday and my dad passed away days later on 3/1/2016 which is my mom’s birthday, we were robbed by our neighbors while we were standing in the room with my dad as he passed, then my mother’s health had gotten so bad this last year I am on 24 hour care at her house, as hard as it is to watch her struggle with her copd among other respiratory issues, I know the end isn’t far, I wouldn’t leave her for the world, for in fact besides my husband and 4 kids, she is my world❤ – Genie

I’ve been a hospice nurse for 7 years in SC/NC. I relocated last summer to be near my parents in Connecticut. They are both in their 80’s in great health. With the work I’ve done for years, I understand too well that one event can change everything. I am positioning myself to be available as their needs progress. Although not officially yet, I am choosing to be a caregiver. ❤️ – Kristie

Something happened and I made a choice

Mom was in the beginning stages of dementia for nearly a year when dad got sick and died last year. I am one of 5 kids, but the only one who didn’t own a home – so I was “free” to move in with mom (if by “free” you mean able to break my lease, move further from my kids and fiancee, and arrange a transfer to another job!). But, once the house is sold, mom will be moving in with one of my sisters, so I will be free to resume my life…but close enough to help sis with mom. – Judi

My brother and sisters had spouses and children, I didn’t want them to have to go through worrying as much keeping as much normally as possible, it’s the best thing I could do for my family and I know as much heartache we share they appreciate my decision. – Sophia

It just happened, but I made the choice to take care of my Mom. I could have put her in assisted living years ago but decided to take care of her in our home instead. – Kathy

I was out of work and my neighbor needed help with all types of things. So I would go there and help her. I also helped her with her dog Snowy. Well she had passed away that’s when I decided to become a care giver and I also took her dog so he would still be loved. She wanted me to take care of her baby. Before she pasted I told her that I loved her and I was taking Snowy home. I still miss her so much and so does Snowy we have a new person next store he still cries. – Peggy

I decided to be my mom’s caregiver, but my husband developed pulmonary fibrosis and later had a lung transplant, so no decision there. – Lucy

For me it was something I never thought I would be able to do. But I got a job at a care home and found something that gives me so much fulfillment and purpose. Side benefits are lots of smiles hugs and love. – Lesley

My husband was a incomplete c5-6 quadriplegic when we met. It was something I accepted from the start. About 6 years into our relationship he fell and broke both of his legs losing most of his independence. With this came a lot of health issues. Then in 2015 I decided to be his mothers caregiver too, she had Colon Cancer. Sadly we lost her in Dec 2015. My husband passed away last month. Now I have to learn to care for myself. – Staci

My husband became ill, my wedding vows said in sickness and health till death do us part.. I had been an EMT and an MA so I chose to do it myself, I have no regrets he passed at home March 18, 2016. – Linda

I decided to be a Nurse as a career, and then my Mom was diagnosed with Alzheimer’s, so that both just happened and I made the choice to move from MA to FL to help care for her and my Dad and continue working. – Stacey

I cared for my grandmother, mother and part-time invalid husband (deceased). Later on, when I couldn’t find an office job, it was suggested I become a private caregiver. God made me for this, and I never looked back! Then disability took my career, and now my husband is my caregiver. I am blessed with a caring hubby, but I miss my job. – Sylvia


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How to Efficiently Make Over Your Closet

How to Efficiently Make Over Your Closet

Let’s face it. We are regular people who do not live the lives featured in glossy magazines. We aspire to be neater, but to achieve this optic we would need to subsist on six interchangeable outfits of monochromatic khaki and white. What about winter clothes? What about navy blue? How can we whittle away our wardrobes to better suit the life we lead?

After moving fourteen times over the past thirty years, I have discovered I have a knack for the packing and unpacking process. When my college roommates marveled at how I organized, they often asked if I could help sort their dresses, tops, and sweaters, too. As I have aged, I have found organizing to be my great stress release.

This closet call for order has continued for decades because many of my moves involved tricky closet negotiation. An unforgiving space requires a “can-do” attitude. I once gave up a generous walk-in closet for a cute neighborhood with an “I Love Lucy” sized closet. The single shelf above a wooden rod that spanned the same narrow width as those 1950s refrigerators reminded me that everything back then was slim.

It was my greatest challenge. But I relished every moment of reimagining how I could make my wardrobe fit efficiently into this unrealistic space for a modern day woman.

Fortunately, by the time my Depression-era mother needed help managing her own home filled to the hilt, I was not at my wit’s end as I took in the mess of five overrun bedrooms and closets. I was in a state of creative delight, setting timers and working feverishly against the clock to clean sweep—ultimately giving her a home that she loved for its order and cleanliness.

Here is my tried-and-true go-to plan for an efficient closet makeover.

Step 1: Sort

The best way to sort a closet is to pull everything out at once. Set 4 zones to Keep, Toss, Dry Clean, and Donate. Set a timer, give yourself a two-hour window and have your sorting crates nearby. An old piece of luggage you want to donate, or a sizable box, or a Hefty sack can be used to stuff inside the clothes you no longer wish to keep.

Pile your contents onto the bed according to categories: all tops together, suits, pants, day dresses, fancy dresses, coats—all in separate mounds.

Do not be afraid of your disaster zone. I have seen this a thousand times before, and it does nothing short of inducing an adrenaline rush most athletes have to run five miles to achieve. I get mine without the sweat, or, sadly, the calorie burn.

Eliminate from your wardrobe threadbare or unnecessary multiples. Be selective. Do you need all of the black tops you have amassed? Keep only what you love and feel great wearing.

My 1950s closet meant that instead of being able to accommodate four pair of black boots (knee-high heeled, ankle-high heeled, knee-high flat, and cowboy style) I would need to make do with one all-purpose pair. I chose to save the knee-high heeled, which looked far better under trousers than the short boots ever did.

Step 2: Set-Up

My favorite 4 closet essentials are always the same:

1) Beige suede hangers, the thin kind. This will help to create a uniform look, and maximize the hanging space you have; bulky wooden coat hangers that curve have no place in a lady’s closet. All crooks to face wall uniformly when rehanging garments.

2) A good shoe organizer is key and the benefit of trial and error keeps me coming back to the same one: a vertical hanging style with twelve shoe-boxed sized compartments. Metal shoe racks on the floor, or hanging pockets over the door all end up hogging precious real estate or become buried beneath a sea of clothes, thus making your shoes inaccessible.

3) Storage boxes with lids. I always pick a couple of oversized hat boxes to contain clutter, or keepsake cards. Lids are key—you don’t want to see the mess. It disturbs the Zen of your new closet.

4) A double-hang rod is essential for keeping shirts and blazers above skirts and folded trousers below. If you are really Type A, you will correlate your wardrobe so like colors hang above like colors.

Step 3: Stage

Create a visual aesthetic. Hide clutter, loose bobbles, or love letters inside storage boxes. Wardrobe moves light to dark, ordered by sleeve length within palette. Top rung—hang blouses, jackets; bottom—skirts, pants, in corresponding hues.

Space beside double-rod is for dresses together according to color (light to dark), style, sleeve length; special occasion dresses come next; then swing coats; then winter coats, if you don’t have a hall closet.

If you have bonus space, move a dresser inside the closet, opening up the bedroom floor. A nice add-on: family and friends in frames of similar colors, varied styles.

With all of your clothes hanging according to style, and color, you have a better idea of what to shop for next, and what to avoid doubling up on.

Your timer should be dinging just about now.

“Managing the Paper Trail” will be the next blog posting here.


Stefania ShafferBy Stefania Shaffer

Stefania Shaffer, a teacher, speaker, and writer, is grateful her WWII parents raised her to do the right thing. Her second book, the Memoir 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind has been called “imperative reading”. Funny and compassionate, this is the insider’s view of what to expect from your daunting role if you are the adult child coming home to care for your elderly parent until the very end.

The Companion Playbook is the accompanying workbook that provides the busy caregiver with the urgent To-do list to get started today.

www.StefaniaShaffer.com

Saving the Caregiver System

Saving the Caregiver System

More families are relying on caregivers to care for a sick relative or friend. This could be a professional certified caregiver or simply another family member taking on the responsibility. However, the caregiver system needs an overhaul to support the growing number of seniors and those with dementia in the coming years.

With a system teetering on the brink of extinction within an industry expecting explosive growth, what can businesses and the public do to recruit and retain certified caregivers?

The Dangers Facing the Caregiver System

Qualified nursing homes, assisted living facilities and other caregiving businesses are competing with one another to find and keep new caregivers. Due to low pay and inconsistent hours, caregiving is facing a high turnover. With a profession that relies on long-term care, many certified caregivers move from one facility to the next for better quality conditions or pay.

It’s estimated that one in five people in the United States will be age 65 or over by the year 2030. This brings the issue of the caregiving crisis into focus as family members take on the unpaid responsibility of caring for sick relatives as well as caring for their own children. Aging parents unable to care for themselves may rely on their adult children for care, especially daughters.

JAMA Neurology points out that more women tend to assume the caregiver role compared to men. This can leave the female head of household having to cut back from a full time position to part time while caregiving.

If the family member suffers from dementia, which as many as 8.5 million of Americans will by 2030, the stress of giving round-the-clock care may be too much without an additional caregiver.

Many state Medicaid programs continue to offer the same flat rate to caregivers that has not changed for years, leaving caregivers looking for better-paying jobs. In some states, the unions that support caregivers are demanding dues from the Medicaid reimbursement, leaving even less in the caregiver’s pocket.

How Caregiver Employers Can Help

Although most caregiving facilities have their hands tied when it comes to raises, employers should consider offering their certified caregiving employees bonuses and/or more paid days off. Some nursing home owners provide their caregiving staff with special lunches or promise not to cut their hours due to the census.

Nursing home owners and caregiving business managers should stress the importance of long-term care with prospective caregivers. Dementia patients require the same caregiver every day as seeing a familiar face will make them feel safe and secure in their environment.

How the Community Can Help

High schools can also get involved in saving the caregiver system by promoting certified caregiving as a profession. Caregiving as a trade now involves training courses consisting of more than 100 hours of training as well as a standardized test in some states. In Arizona, students seeking certification need to train for 104 hours before testing.

The State of Washington requires 75 hours of training before a caregiver can work for a licensed agency, and those seeking the Certified Nursing Assistant (CNA) will need 85 hours. New Jersey requires 76 hours of training, and Nebraska wants 16 out of the mandatory 75 training hours supervised.

Employers of individuals faced with caring for a sick family member or friend should consider offering paid leave to the caregiver. Although it is only a temporary solution, given enough time away, the caregiver may be able to make long-term care plans. One company, Deloitte LLP, has taken this approach, offering employees 16 weeks of paid leave to care for a loved one.

In states with stagnant Medicaid reimbursement rates for caregivers, the public can speak with their Representatives about the possibility of increases.

In Illinois, a bill raising the pay wage from $12 an hour to $15 an hour for caregivers made its rounds through the Senate and the House. If more individuals bring this concern to their state’s legislation, caregivers may receive the much-needed increased pay rate and caregiving agencies may retain their best employees.

Image by Pixabay

Track Your Caregiving Feelings In a Journal

Track Your Caregiving Feelings In a Journal

Caregiving can be so demanding that we lose track of our feelings. When my husband was dismissed to my care after eight months of hospitalization, I felt a dizzying array of feelings. Of course I was elated to have him home, but I was scared too, and wondered if I had the skills to care properly for him.

Totally opposite feelings, such as despair and hope, sorrow and joy, can be exhausting. I’ve found it helpful to name a feeling as soon as I feel it. You may wish o do this too. Why should you bother to track your caregiving feelings?

You’re a caregiver because you care. If you didn’t care you would do something else. Feelings influence your approach to the day, your daily tasks, and the care you provide. Some feelings are pleasant, while others are unpleasant and worrisome. Feelings can divert you and push you off-course, and rob you of sleep. When you awaken in the morning you feel like you haven’t slept at all.

Good feelings lift you up. There are feelings that make you smile, laugh, and remember happy times. Although you can’t control what happens in life, you can control your responses to events. In fact, you can decide how you want to feel. With determination and practice, you can replace negative feelings with positive ones. Admittedly, this takes practice, but the skill is worth your time and effort.

Upsetting feelings pull you down. Caregiving is a rewarding, yet difficult role, and it’s a role that keeps expanding. Frustration, resentment, and other negative feelings make caregiving more difficult. You may find yourself obsessing on one feeling, and think about it all day. Why won’t this feeling leave you alone? You can help yourself by being aware of your feelings, identifying the sources, and naming them.

Your feelings affect your loved one. You may think you’re hiding your feelings, but your loved one can pick up on them. Your feelings may become her or his feelings, an outcome you didn’t anticipate or want.  A development like this can make you feel helpless. Indeed, you may wish you had more time to process your feelings. One of your challenges as a family caregiver is to cope with feelings without affecting your loved one.

Processing feelings takes time. It’s common for family caregivers to feel isolated and alone. When you agreed to be a caregiver, you may have expected help from family members. Help may not arrive—something that can provoke anger. Dealing with anger takes time, honesty, and emotional spadework. Coping with anger now is better than stuffing it.

Feelings take physical and emotional energy. When you least expect it, feelings can drain your energy. In fact, some feelings may perseverate, or stick in your mind. Tracking your feelings, and learning to understand them, helps you conserve physical and emotional energy. You may also learn how to pace yourself. Keeping a Feelings Journal may be helpful. Instead of writing anything and everything, you may wish to use a template, and keep the pages in a three-ring binder. I created this template for you.  

Date ____________

Time ____________

Today’s Main Goal _____________________________________________________________

Today’s Feelings __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

______________________________________________________________________________

Notes to Myself __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Under Today’s Main Goal you may write “Take Jim to the doctor.” Under Today’s Feelings you may write stressed, cheerful, and grateful. Under Notes to Myself you may write “Make follow-up doctor’s appointment.” Tracking feelings in a journal can help you and your loved one. Best of all, you discover someone special—yourself.

5 Ways to be a Happier Millennial Caregiver

5 Ways to be a Happier Millennial Caregiver

When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.

It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.

#1. Self Care

It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously.  In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.

According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.

Take care of yourself.

Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.

Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.

#2. Let Go of Guilt

As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.

On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.

Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.

The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.

#3. Realize that Friendships Evolve

When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.

Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.

#4. Get Support

Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.

Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.

#5. Accept Your Parents for Who They Are NOW

Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.

Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.

How to Address Mental Health Issues in the Family with Your Child

How to Address Mental Health Issues in the Family with Your Child

Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.

By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.

I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.  

If you’re struggling to broach this difficult topic, here are a few pointers:

Don’t Baby Them

Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.

Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.

Use Metaphors

However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.

A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.

Encourage Research

If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.

Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.

dad and his kids working through feelings by coloring together

Ask Their Feelings

The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.

There are a few important check-in points for children:

 

  • When you first offer an explanation, ask how they feel about what you’ve said.
  • After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
  • If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
  • The media can offer negative views of mental health patients.  If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.

 

While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.

Give Them Responsibility

Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.

Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.

Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.


 

Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.

Exhaustion

Exhaustion

Exhaustion.  It can hit out of the blue.  You think you’re doing well and handling everything, and you have a hopeful outlook.  It’s not always physical exhaustion.  It can be mental or emotional exhaustion.  But, mental or emotional exhaustion definitely adds to the physical exhaustion.  That’s where I am this week.  I’m mentally exhausted.  I’m tired of struggling all the time.  I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has.  I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.

Home dialysis was supposed to make things easier for “us.”  They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation.  They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time.  We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing.  It doesn’t include set-up time and clean-up time.  It ends up more like 5 hours a night.  That’s a lot.  They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency.  It’s not easier at all.  It’s harder.

I’m so tired of worrying about money.  I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work.  I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love.  I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying.  But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work.  There just isn’t enough time in the week.

I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out.  People will say, “you don’t have to give them everything they ask for.”  My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss.  I hate that there are times they have to miss out because I’m not available or can’t afford something.  I hate struggling to figure out where the extra money is going to come from.  I hate that I am the only one who worries about it.  It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.

I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick.  He’s sleepy, he’s medicated, his brain is often foggy.  And there isn’t much he can do.  He is exhausted, too.  His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful.  He doesn’t have a solution to any of this.  I’m tired of handling it all alone.  I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness.  I keep him in mind because he has enough to worry about.   He didn’t ask for this any more than I did.  He has it worse.  My exhaustion is nothing compared to his.

This exhaustion has come and gone many times in the last 9 years since he got sick.  We always rally, we always make it through, we always survive.  It’s a matter of plugging along and pushing through.  We have no other choice.


Read more on Renee’s blog.

You can’t be there every second, but this app has your back

You can’t be there every second, but this app has your back

Caring for seniors requires knowledge, skills, and stress resistance. Leaving our loved ones in the hand of others requires trust. It is my honor to talk to Jacqueline Thomas, a professional caring staff who uses her old phones to build a team with the families of the people she cares for.
Her stories have testified that creating and sharing a video connection is an open door that fosters trust between caregivers, patients, and their family members. Let’s take out our old phones lying in the drawers, bring them back to work, and make caregiving a bit easier.

I have been working as a caregiver in nursing homes for years. This job is rewarding because I can care and provide comfort for people who can’t be taken care of at home anymore. However, it comes with many different challenges.
Some of my patients (termed as “consumers” in our service) are non-verbal. They have problems expressing their wishes as well as problems. Even though I am supposed to be available at all times during my shift, I do sometimes have to go to the kitchen to prepare for food, for example. I have learnt that anything can happen in a second in my job, so I need all the help I can get. Alfred is my recent discovery. It is an app that turns spare phones or tablets into cameras. Just sign in with Gmail, and I can watch the patient/consumer or receive Motion Detection notifications even when I am somewhere else in the house.
I set a Camera Phone up in front of a Teddy bear by a non-verbal patient’s head so that I can always keep an eye on him. Lucky for us I did. When I was heating food up in the the kitchen the other day, I saw on my phone screen that he had a seizure. I quickly rushed back to his side and handled the situation. It was a close call!
It isn’t necessarily easier to take care of patients/consumers who are able to speak. Some of them refuse to communicate, so I have to observe them closely. Patients/consumers with dementia could forget where they put things and whether they ate. If they complain to their family, who in turn complain to the nursing home, it could easily cost me my job or even license.
While I installed Alfred to ensure my job security, what I have found is that it fosters trust between me and the patient’s family. Rather than waiting for them to take the initiative to surveil me, I have added them to Alfred’s Trust Circle so that they can check on the patient/consumer as well as my interactions with the patient/consumer. It makes us a team.
My patients/consumers might not get better, but I am proud to provide them with dignity and comfort. It’s great to do this with a little help from Alfred.

Renee YEH is the founder of Alfred, an app that allows anyone with an old cell phone to use it as a motion detected home care camera.
Professional Caring: How To Get Back To Work After Taking Care Of A Loved One

Professional Caring: How To Get Back To Work After Taking Care Of A Loved One

Caring for a loved one who has special needs or has become ill or infirm is a big job. Not only is it physically demanding, it takes a toll emotionally, as well. It can be difficult to watch someone you love suffer through painful issues; yet for many caregivers, knowing that they can provide some measure of relief by helping them with daily activities often makes the job easier.

If you’ve cared for a loved one and had to take time off from the workforce to do so, you might be thinking about finding employment again. Now that you have experience with caring for someone with special needs or an illness, there are many paths you can take that involve helping someone.

There are some steps you’ll need to take first, however. Here are the best tips on how to get started.

Figure out your goals

It takes a special kind of person to take care of someone who cannot take care of themselves. It’s a very demanding job, and it can be difficult to perform physically if you don’t have help. Ask yourself what your goals are and think about how your daily duties might affect you. Patience, kindness, and emotional strength are all required attributes for a caregiver to have.

Do some research

Before making any decisions, do some research on the field you want to enter. Find out what it takes to become a licensed caregiver in your state and decide what area you want to focus on. If you want to provide medical care for someone, you might need a nursing degree. If you’re thinking about taking on a younger patient, you may want to consider taking some child psychology classes. If you want to provide general home care, like cooking, housekeeping and errand-running for someone who still has some independence, it’s important to know what to charge so you’ll be competitive in the market but not sell yourself short.

Talk to someone with experience

You may have experience taking care of a loved one, but providing care to someone you don’t know is a very different job. Learning their likes and dislikes, their habits and needs… it can all be a little overwhelming at first, especially if you are hired by a family who has specific guidelines for their loved one’s care. Talk to someone who has experience in the professional caregiving field and get some feedback. Don’t be afraid to ask questions and find out what they like and don’t like about their job. Again, you have options in how you can help care for someone, so finding out what this kind of job really involves firsthand may help you choose the right fit for you.

Make some contacts

Once you’re fully licensed to become a caregiver, it’s important to start making contacts in the healthcare world. Consult your local department of health services to find out if there is a registry system you can be added to that would allow clients to find you. You can also contact health insurance companies and ask about being added to their list of care providers.

One good thing about pursuing a career in care is that you have plenty of experience under your belt now, even if not formal experience. Surely this will help you as you pursue caregiving in a formal manner. It will certainly help you in any job interview scenarios.

 


By Jim Vogel

Jim and his wife, Caroline, built ElderAction.org after becoming caregivers for their aging parents. He enjoys sharing valuable information with seniors and their caregivers.

Photo via Pixabay by Maxlkt

When is enough, enough?

When is enough, enough?

I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.

I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food, I looked around and started criticizing myself for my obvious incompetence in running a household.  What kind of wife and mother lets her home look like this?  How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.

I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.

I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.

Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something.  I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.

These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?

Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.


Read more on Renee’s blog.

Why a Memory Care Facility was the Right Choice for my Mom at 56

Why a Memory Care Facility was the Right Choice for my Mom at 56

The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.

Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.

My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.

Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.

To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.

We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.

Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”.  My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.

And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.

With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.

I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.

Loneliness

Loneliness

I believe that one of life’s greatest tragedies, now, and perhaps from the beginning of time is, loneliness.

I doubt that there are many people that can say they haven’t been lonely at some point in their life. Sometimes we’re simply victims of circumstance, isolation, or suffered a tragic loss. There are many reasons for loneliness, and it really doesn’t matter why you are lonely, unless you don’t somehow resolve the issue causing the loneliness.

Then it becomes a problem.

Staying isolated or lonely should not be considered an option, but is a huge problem worldwide. And it can lead to various illnesses, untold misery, and even suicide. You must seek help. And that doesn’t have to be in the form of a therapist. Seek out family, friends, someone that will listen to you. If I were walking through the market and a person walked up to me and said, I’m lonely, my immediate reply would be, “how can I help you.” And mean it. His/her words would start a dialogue.

Being a people watcher, I see things that, often times, most people don’t. It’s not uncommon for me to see a distressed looking person, walk over to him/her and ask, “Are you okay?” And in every case so far, the person has said that their okay. And you know they’re not. But for those that are hurting, you at least acknowledged their pain. And that does help them knowing, someone cares.

I’ve written a few compelling articles on loneliness over the past 2 years. And looking through them, I’ve realize I’m really good at identifying problems, but I didn’t offer much help. So I’ve been researching and believe I’ve found some really good help for many of you suffering from isolation or loneliness. They are both 24 hour service’s and you will get a real person. So if you are lonely, feel isolated, emotionally distressed, depressed, or need someone to talk too, make the call. Both these services are provided free of charge.

The neat thing about calling them and having a chat was, their willingness and wanting to help. I told both locations they may get a lot of calls and that seemed to excite them. They truly want to help you. And I do, too.

Institute on Aging is for older adults, 60 and over. Or if your disabled, one can be younger. Check out their beautiful website. It has a wealth of information and some help too. These people do care.

IOA has a friendship warm line you can call when you feel emotionally drained, lonely, anxious, depressed, or just need someone to talk to: 1-800-971-0016 They have no caller ID, so your call is anonymous. I called them at 3 AM, and the lady said she was the answering service and that if I was in crisis mode, or suicidal, she’d connect me to an experienced member. She said they handle thousands of calls a year.

HopeLine has no age group, and provides a wealth of support. They have a website, too. They are a true 24-hour service, and will talk to you if you’re lonely, emotionally distressed, anxious, depressed, or perhaps just need someone to chat with. The phone number is also a crisis or suicide hotline. I called them today, and based on my area code, they hooked me up with a lady in my town, Wichita, Kansas. They have a large building here, open 24/7 with on-duty counselor’s. These folks appear to be the real deal, and have offices throughout the country, fully staffed. If there were to be an office in your area, you’d be onto a good thing. You can tell, I was impressed. The phone numbers are: 1-919-231-4525 and 1-877-235-4525. They also have connections through those two phone numbers for PTSD Veterans.

So, if you’re feeling isolated, lonely, anxious, depressed, wake up from a nightmare in a crisis or feel suicidal, make the call.

Either one of these sites will help you. Through studies and research we know, depression, isolation, or loneliness, can be precursors to suicide.  The chat lines are geared to try to not let your emotions get that far. Make the call!

After I lost my wife Annie to cancer, I was so lonely. In the middle of the night I had no one to talk too, and no guidance as to where I could even call. Well, you’ve got guidance now. Use it, If the need arises.

These emotions I’ve talked about can morph into a huge problem if you’re not careful. Don’t let them. It doesn’t have to be that way. One person can touch a life and change it forever. Maybe that one person will be on the end of the line, you call.  Surely you deserve that. I certainly think you do.

I wish you all, the best.

Can I get paid to be a family caregiver?

Can I get paid to be a family caregiver?

It’s a question I’m asked all the time by family caregivers: Can I get paid to be a family caregiver? It’s usually accompanied by qualifiers: I’m not trying to be greedy, but I had to quit my job to take care of my mom. My husband isn’t comfortable having a stranger...
An open letter to temporary caregivers: how to prepare and what to expect

An open letter to temporary caregivers: how to prepare and what to expect

If your parent is undergoing surgery or is experiencing a prolonged illness, you may find yourself in the role of temporary caregiver. Understanding what to expect during the caregiving period will help you prepare for this role.

Adult children are often pulled among responsibilities to their parents, their own spouses and children, and their jobs. While temporary caregiving can be an opportunity to show your love and concern, it can also be stressful and absorb a lot of your energy. You can minimize the stress with careful planning.

First, set aside some time to make a plan. Does your home need to be rearranged or altered to give care? Does your parent need psychological or physical preparation for their procedure? Do you need preparation?

Organize Your Home

Think first about the type of procedure being done and what the recovery period physically requires. Consult with your parent’s physician if necessary.

A number of surgeries, such as hip and knee replacements, require patients to use walkers as they heal. Does your home allow for walker access? Does your parent need to be accommodated on a specific level of the house to avoid stairs?

Many procedures require special equipment, such as a bathroom bar, a recliner or a lifting apparatus. Be sure to check on all these requirements, giving yourself plenty of time to order and receive special equipment, and, if necessary, to rearrange your home.

Second, make your home safe for your recovering and possibly weaker-than-usual parent. Stabilize or remove any area rugs that might cause them to slip and fall. Make plans for a resting and sleeping area close to a bathroom. Make sure that light is adequate for an older individual to see and easy for them to adjust.

Prepare the Patient

Prepare to help your parent manage anxiety. It is normal to feel some anxiety about any procedure, especially surgery. Acknowledge this as part of your preparation. It can be very helpful to research the procedure together.

If your parent is having knee surgery, for example, it can greatly reduce anxiety to know that over 600,000 people in the United States have knee surgery each year, and fewer than 2 percent have serious complications. To complement the numbers, understanding what happens before and during knee surgery — like if radiofrequency ablation (RFA) will help or what type of metal components will be used — could ease the concerns you and your loved one have about the overall process.

You should also prepare by establishing a good relationship with your local pharmacy. Decide where you will go for needed medications before the surgery, so there will be no delay in filling prescriptions after the procedure. Make sure you have a list of your parent’s existing medications so you can discuss possible drug interactions with the doctor and pharmacist.

Will your parent be able to drive after the procedure? If not, you or someone else will have to drive them to their follow-up appointments.

Also, discuss insurance and finances with your parent. You need to know if they have any concerns about medical bills and charges, as this can impact both stress and recovery.

This is also a good time to bring up living wills and powers of attorney. While the majority of operations are successful, every adult should have their wishes on file in a will.

Understand What to Expect

Many patients spring back from surgery as soon as they start to physically heal, but it’s wise to expect some issues to pop up.

Medical interventions can be complicated. Your mom or dad may just not feel well. The procedure may have made them very aware of their aging body. Stitches might be irritating. They may have difficulty sleeping. Being in unfamiliar surroundings may be stressful. If the procedure requires dietary restrictions, they may feel frustrated — especially if they aren’t allowed to have their favorite foods.

Deal with issues as they come up. Be compassionate to your parent and show you care about them.

  • Acknowledge their feelings and frustrations.
  • Use humor if appropriate.
  • Emphasize incremental recovery.
  • Discuss the future optimistically.
  • Prepare the best meals you can within the indicated dietary requirements and eat the meal with your parent.

If they are having trouble sleeping, could a television, radio or computer provide entertainment late at night? Could the two of you play cards or another favorite game? If the unfamiliar environment is an irritant, could their space be enlivened with favorite pillows or decorations?

One good method to reduce stress for both you and your parent is to set up an online social network. Many older people adapt very well to social media once they see its benefits. Many social media sites like Facebook have groups for people who have particular conditions, such as joint replacements or diabetes. It can be helpful to read those stories.

There are social media sites for temporary caregivers as well. Set yourself up on one of these sites to obtain advice and support.

Temporarily providing care for your mom, dad or another relative can be a time to bond and show your love. But it can also be a challenging time. Prepare your home, your parent and yourself for the caregiving period and know what to expect, both physically and psychologically.

Image by Unsplash

Don’t underestimate the power of caregivers

Don’t underestimate the power of caregivers

The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”

I’m sure all of you can guess what the answer was: a resounding yes.

After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.

It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.

Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:

  • Managing the financial toll of caregiving
  • Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
  • Making sure family has adequate support system

There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.

The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.

Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.

More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.

Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.

I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.