Tampilkan postingan dengan label caregiving. Tampilkan semua postingan
Tampilkan postingan dengan label caregiving. Tampilkan semua postingan

Selasa, 23 April 2013

Beleaguered Caregivers Getting Help from Apps

Beleaguered Caregivers Getting Help from Apps

Via http://www.wirelessdesignmag.com/news/2013/04/beleaguered-caregivers-getting-help-apps


NEW YORK (AP) — As her mother and father edged toward dementia, Nancy D'Auria kept a piece of paper in her wallet listing their medications.

It had the dosages, the time of day each should be taken and a check mark when her folks, who live 10 miles away, assured her the pills had been swallowed.

"I work full time so it was very challenging," said D'Auria, 63, of West Nyack.

Now she has an app for that. With a tap or two on her iPhone, D'Auria can access a "pillbox" program that keeps it all organized for her and other relatives who share in the caregiving and subscribe to the app.

"I love the feature that others can see this," D'Auria said. "I'm usually the one who takes care of this, but if I get stuck, they're all up to date."

From GPS devices and computer programs that help relatives track a wandering Alzheimer's patient to iPad apps that help an autistic child communicate, a growing number of tools for the smartphone, the tablet and the laptop are catering to beleaguered caregivers. With the baby boom generation getting older, the market for such technology is expected to increase.

The pillbox program is just one feature of a $3.99 app called Balance that was launched last month by the National Alzheimer Center, a division of the Hebrew Home at Riverdale in the Bronx.
"We thought there would be an opportunity here to reach caregivers in a different way," said David Pomerantz, executive vice president of the Hebrew Home. "It would be a way to reach people the way people like to be reached now, on their phone."

The app also includes sections for caregiving tips, notes for the doctor and the patient's appointments, plus a "learning section" with articles on aspects of Alzheimer's and an RSS feed for news about the disease.

Trackers are also important tools for Alzheimer's caregivers.

Laura Jones of Lighthouse Point, Fla., says she was able to extend her husband's independence for a year and a half by using a program called Comfort Zone.

"He was just 50 when he was diagnosed," she said.

Jones said she went to work so he would continue to get insurance coverage.

"Day care was not appropriate, home care was not affordable," she said. "Even when he stopped driving, he would ride his bike all over town, to the gym, for coffee, errands. He would take the dog for a walk and be out and about when he was alone and I was working."

Using Comfort Zone, which is offered by the Alzheimer's Association starting at $43 a month, she was able to go online and track exactly where he was and where he had been.

Her husband carried a GPS device, which sent a signal every five minutes. If Jones checked online every hour, she would see 12 points on a map revealing her husband's travels. She would also get an alert if he left a designated area.

Eventually, the tracking revealed that Jones' husband was getting lost.

"He would make a big funny loop off the usual route and we knew it was time to start locking down on him," she said.

Mended Hearts, an organization of heart patients and their caregivers, is about to start a program to reach caregivers by texting tips to their phones.

"We hope this will be the beginning of several patient- and caregiver-based texting programs that reach people where they are," said executive director Karen Caruth.

Lisa Goring, vice president of Autism Speaks, said tablets have been a boon to families with autistic children. The organization has given iPads to 850 low-income families. And the Autism Speaks website lists hundreds of programs — from Angry Birds to Autism Language Learning — that families have found useful.

Samantha Boyd of McConnellstown, Pa., said her 8-year-old autistic son gets very excited when the iPad is brought out.

"There's no way he'd be able to use a keyboard and mouse," she said. "But with the iPad, we use the read-aloud books, the songs, the flash card apps."

She said the repetitiveness and visuals help. "He catches a word and repeats it back. He says the name of a picture, and the iPad says it back."

Boyd said the iPad also works as a reward: "He likes to watch Netflix on it."

One of the most popular online tools for caregivers is one of the oldest: the message board, available all over the Internet and heavily used by caregivers of dementia and autism patients, who perhaps can't find the time for conventional support groups.

"It's a place for families to talk about the strengths and the accomplishments of their child with autism but also talk about some of the challenges and be able to find the support of other families," Goring said.

Some tools are not specific to a particular disease or condition.

CareFamily, which prescreens in-home caregivers and matches them to customers over the Internet, has online tools that let a family remotely monitor a caregiver's attendance, provide reminders about medications and appointments, and exchange care plans and notes via email, texting or phone.
"We're in the infancy of what technology can do for caregiving and it's only going to grow," said Beth Kallmyer, a vice president at the Alzheimer's Association.

But she cautioned that it's too soon to depend entirely on online tools.

"It's not a good fit for everybody," she said. "When you're looking at people impacted by Alzheimer's disease, including some caregivers, you're looking at an older population that might not be comfortable. We always have to remember technology is great — when it works."

Jumat, 05 April 2013

How care at home helped Kathryn live her life to the fullest, despite #ALS

How care at home helped Kathryn live her life to the fullest, despite #ALS

Via ALS Association Greater Philadelphia website: http://www.alsphiladelphia.org/document.doc?id=1654

"A Lady in Red Brings Tender Care"
The following article on Kathryn Voit is from Bayada’s Website:CARE Connection Vol1 Number1.Jan 2012; by Caroline Graham. Sadly Kathryn lost her courageous battle with ALS on March 8th, 2012. She was loved and admired by all of us at The ALS Association Greater Philadelphia Chapter, and she will be deeply missed.

How care at home is helping Kathryn live her life to the fullest, despite ALS


Kathryn V. celebrated her 75 h birthday in a house filled with laughter and love, courtesy of her husband, Gerry, 80, the couple‘s four children, and 10 grandchildren.

―We thought about going out to a restaurant, but it‘s getting harder for Kathryn to chew and swallow, so we specially prepare her food for her,‖ says Gerry. ―It‘s much easier to stay home.‖

Diagnosed with amyotrophic lateral sclerosis (ALS) in 1998, Kathryn has defied the odds, as her disease has progressed much slower than anticipated. ALS causes nerve cells to waste away or die, preventing them from sending messages to the muscles.

This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. When the muscles in the chest area stop working, it becomes difficult or impossible to breathe on one‘s own.

―The symptoms came on gradually,‖ says Gerry. ―At first she simply couldn‘t walk as fast, then she started to trip while walking. We were in the airport in San Francisco on our way home from a vacation when she realized she could barely walk at all.‖

Kathryn, who worked for years as a math professor at numerous colleges and universities, did not let her diagnosis stop her from teaching. At first she used a cane, then, a wheelchair. But after three or four years it got to be too much, and she had to stop working.

The disease had progressed to the point where Gerry knew he couldn‘t handle her care on his own.

Gerry contacted BAYADA Home Health Care and found out that a home health aide (HHA) would be able to meet Kathryn‘s needs and improve her quality of life.

HHA Connie Smith was carefully matched with Kathryn and Gerry. Kathryn shares that she had always been concerned that having a home health aide would ruin her privacy, but with Connie‘s discreet presence, she didn‘t feel that way. ―We can be silent together or we can talk and laugh together. It‘s fun to have this sisterly contact that we can enjoy, from politics to clothes, to what‘s on the menu today."

―Connie and Kathryn are like peas in a pod," says Gerry, describing the friendship that has developed in the eight years since Connie began caring for his wife.

ALS has robbed Kathryn of the use of her legs and arms. What‘s more, her trunk muscles are too weak for her to sit up on her own, so her wheelchair needs to be in a tilted back position.


Connie has adapted to the differences in the level of care that she provides to Kathryn with compassion, patience, and skill. ―As I become more and more disabled with ALS, Connie has become my hands," says Kathryn.

During a typical day, she will bathe and dress Kathryn, wash and style her hair, feed her, and help with toileting. Connie also takes her clothes shopping or to ceramics class. And thanks to a special stand used to prop up books, Kathryn is able to continue her love of reading, while Connie helps by turning the pages.

Modern technology has also opened a world of possibilities for Kathryn. At first, voice activated software helped Kathryn stay connected. Then, when her voice became unrecognizable because of the disease, Gerry connected their computer to the flat screen TV. A reflective dot placed on Kathryn‘s nose interacts with a sensor, which, in turn, interacts with the computer.

Connie learned how to set up the equipment for Kathryn, who can then control the mouse with the movement of her head.

―We have always been able to adapt to each new challenge as her disease progresses," says Gerry.

Last year, as ALS took away her voice, Kathryn found that writing poetry became a way to communicate with the world. During her birthday weekend, Kathryn participated in a special poetry reading at her church. Kathryn wrote this poem about Connie and her care:

A lady in red Brings tender care, Fills my needs, Answering a prayer.


Married 51 years, Gerry describes his wife as a gutsy, determined lady who insists on living life as fully as possible. Fortunately, Connie is there by her side, helping her have the best quality of life, despite her diagnosis.

In 2008, Connie‘s exceptional care and compassion for Kathryn earned her the distinction of being named BAYADA Home Health Aide Hero of the Year in front of thousands of employees at the company‘s annual Awards Weekend in Philadelphia.

Connie‘s husband, sister, father, mother, and of course, Gerry and Kathryn, were there to support her as she accepted the prestigious award.