Friday, April 5, 2013

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

Via ALS Association Greater Philadelphia website:

"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.


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