"Walk A Day In My Shoes"

My story...
"David never forgets the holidays and makes sure I remember to celebrate them too," says Richard Margeson of his care provider of four years, David Jenkins.

Richard enjoys his independence and until he can no longer decide for himself about his care, he will have it no other way. Richard, a former Insurance Director from Boston, must now depend on David for his very survival.

David Jenkins has come to play a key role in the 79-year old's life. "He does everything for me, even things that I am greatly embarrassed about like providing intimate personal care," says Richard.

When David noticed the rapid deterioration of Richard's physical condition, a result of both heart problems and a new bout with cancer, he made a commitment to become his care provider. Luckily for Richard that decision changed his life.

Richard explained, "Before I had a pacemaker, I had collapsed and fainted on the floor several times, David was there and helped get me medical assistance. He later insisted that I receive enhanced medical treatment and facilitated the entire process. If it weren't for his quick and analytical decision making skills, I may have died."

" I used to bike ride 26 miles on the beach almost daily, now I can barely walk more than 10 steps without a cane and David's help," said Richard. David provides 24-hour care although he only gets paid $7.50 per hour for 70 hours monthly.

" David works part-time at nights specifically so he can care for me during the day, with doctor visits, preparing my meals, helping me with my baths, and with all my personal hygiene needs. If his wage is cut, he will not be able to continue caring for me; I can only stand for a few minutes. What will I do? I will be left alone and confined," said Richard.

" Knowing I can count on David is so important because I know that if anything happens, someone is there. He helps me with everything." Richard added that David never forgets his birthday and sees to it that he has a cake!"

" I think any cuts to this program by the Governor would be tragic for all of us," says Richard, whose only family members reside outside of the State. "David has become my family."

Before cutting home care, "Walk A Day In My Shoes."
Richard Margeson
Santa Monica, CA

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My story...
Ilene Navarro loves food and she loves to cook. But for the last 13 years, she's learned to push those urges aside because for her, "Eating is excruciating." Ilene suffers from the chronic, degenerative illness: Chron's Disease - an inflammatory disease of the bowel which often renders her immobile with pain.

She spends most of her days in the bathroom (at least 50 visits a day, she says) struggling to manage the pain brought on by this digestive disease. "I'm fatigued and in extreme pain all the time, and I'm getting worse," says Ilene, who at 53 weighs just over 90 lbs. "I need help with everything because I'm so weak."

Her home care worker, Charles, has been authorized 91 hours every two weeks to help her, but, as her condition worsens, she realizes it's not enough. For years now, Charles has been putting in extra, unpaid time to help her.

"I don't have family. He's my savior," she says. "If Charles doesn't come over, then I don't have help to go to the store or to get my meals prepared...and then I don't eat."

"I'm scared to death about home care being cut," says Ilene. "Nobody's going to want to care for me for $6.75 an hour! I'm so scared I'll end up in a nursing home, or dead."

"Why is the Governor picking on the poorest and most vulnerable?" Ilene asks. She lived homeless for a year while waiting for disability paperwork to be processed during a severe illness years ago. "Don't we have it hard enough?"

"Our disabilities have forced many of us into poverty," says the former production manager and ESL college teacher. "We have some of the most challenging lives you can imagine, struggling every day to fight pain and depression. For me, the companionship of my home care worker can mean the difference between a day wrought with thoughts of suicide or a day full of hope for a better tomorrow." Ilene says her home care worker gives her the strength to contribute to other people's lives.

"Charles helps me with everyday tasks that would otherwise leave me without any energy," she explains. Ilene's home care worker enables her to use the little energy she can muster to do social outreach with a community of other disabled home care recipients.

My story...
"I always knew that she is very special, a sweet and gentle sprit full of life," says Lesbia of her 14-year-old daughter, Nancy.

At birth, Nancy appeared to be of normal health. Four teen years ago, shortly after a sermon at church, a man approached the new mother and noticed what she failed to see, saying "This child should be sitting up."

Nancy, now in the 9th grade at Widney High School, is described by her mother as a vivacious and gifted adolescent with a vivid imagination. Although Nancy has a distinct speech impediment, she can communicate and can be found talking on her imaginary phone to her imaginary boyfriend. "She doesn't do it in front of anyone except me," says er mother and adds that Nancy would get terribly embarrassed if someone else was to catch her in action.

"I don't want to say that being her care provider is difficult, because she brings me such joy," say Lesbia. She previously worked as a custodian at The Children's Hospital in Los Angles for four years until a debilitating kidney disease forced her to leave. Lesbia receives dialyses treatment three times weekly.

"We have it rough," says Lesbia who must bathe, groom, dress and feed Nancy. Her new husband is worried about his wife's illness and tries to make a point of her getting
needed rest.

"We are a family unit trying desperately to stay together," she says. "Despite the challenges, and the fact that we are struggling - we depend on my income - my daughter needs my care and I need my job," she adds. "The Governor's cuts would hurt all of us and tear our family apart."

Before cutting home care, "Walk A Day In My Shoes."
Home Care Worker
Lesbia and Nancy Hernandez
Los Angeles, CA