Focus on the Caregiver

 

Lotsa Helping Hands

Lotsa Helping Hands is a free Web site designed to provide volunteer coordination for friends, family, colleagues, and neighbors to assist loved ones in need. Developed by the The Rosalynn Carter Institute for Caregiving, Lotsa Helping Hands is a simple way to organize assistance. A private group calendar designed for coordinating helpers allows volunteers to pitch in with preparing meals, providing rides to appointments and activities and other tasks necessary for life to run smoothly during a crisis. Go to www.rci.lotsahelpinghands.com and follow the directions to start a calendar.

Tips from Caregivers

  1. Laugh about something everyday.
  2. Take care of yourself physically.
  3. Eat a well-balanced diet.
  4. Talk with someone every day.
  5. Let family and friends help. Give them printed material on memory disorders so they can better understand your relative. Give them a chance.
  6. Give yourself permission to have a good cry. Tears aren’t a weakness, they reduce tension.
  7. Exercise. A brisk walk counts.
  8. Get adequate rest.
  9. Try a bowl of Cheerios and milk before bed to promote sleep.
  10. Avoid noisy and/or tension-filled movies at night. The late news itself can add to stress. Skip it.
  11. Reduce daily caffeine intake.
  12. Get professional help if you feel your support system isn’t adequate or if you feel overwhelmed.
  13. Take a break every day, even if it’s only 10 minutes alone in the backyard.
  14. Explore community resources and connect yourself with them.
  15. Listen to music.
  16. Learn relaxation techniques.

These tips were collected from caregivers and care managers of the Medicare Alzheimer’s Project in Broward and Dade counties.

Georgette Rott

Soap Operas are Georgette Rott’s life.

The 50-year-old was born mentally challenged and cannot read, write or tell time. Yet, she knows that lunchtime is after “All My Children.” Her afternoon is filled by watching “One Life to Live” followed by “General Hospital.”

“She thinks the Soap Operas are real,” said her sister, LuAnne Tonioli, 53. “She lives through their experiences. One day, she was upset because one of her favorite characters died.”

Rott spends much of her life sprawled on her trundle bed or confined to a wheelchair. She’s very social but her rapid-fire speech is difficult for anyone but family members to understand.

The petite woman weighs just 78 pounds and her skinny legs can no longer move. She walked until the age of 16 when she was hospitalized with stomach problems. A drug overdose put her in a five-month coma and doctors told her mother to let her die in a nursing home.

Her mother never gave up and Rott emerged from the coma with her legs stuck in the fetal position. Hospital bills caused the family to lose their home in Cherry Hill, N.J. after Rott’s father died from multiple sclerosis. Mother and daughter lived in an apartment on the pair’s social security benefits.

Eight years ago, Rott’s mother died and no one had made plans for Georgette’s future. She moved in with her older sister and her husband in New Jersey. Five years later the Toniolis decided to retire to Florida so they could be near their three grown children. But the move meant that Rott’s state benefits ended and she was placed with 10,000 others on a waiting list for Med-Waiver benefits in Florida.

Rott receives $600 a month in social security benefits and the check pays for three days a week to the Abilities Resource Center (ARC) in Vero Beach, where she socializes and takes part in a work program designed for the developmentally disabled.

Georgette looks forward to the days she spends at ARC because she gets out of the house, her sister said. Yet the couple does not have the funds to pay the $47 a day fee five days a week.

LuAnne Tonioli travels 36 weeks out of the year with her job planning meetings for pharmaceutical companies. Her husband is a retired truck driver who fixed and resold houses until the market slowed down. Now he is left in charge of his wife’s sister.

“My husband and I love her (Georgette) but we’re getting tired and are starting to fight a lot due to the stress,” said LuAnne, who added that family members do not help as much as they had hoped.

The couple, who have been married 30 years, talks about divorce or separation but if one left, there would be no one to care for Georgette. They have health problems of their own and worry about the future.

The couple had planned a trip to the Grand Canyon this summer and paid $1,400 so Georgette could spend two weeks at Camp Challenge in Sorrento. But after their plane tickets were purchased, the camp’s staff walked out and the Toniolis were left with no place to leave Georgette. They had to pay a caregiver $25 a day just so they could go on their first vacation in years.

The Tonioli’s were told five years ago that Georgette was one of 5,000 waiting for state benefits, now she is one of 10,000. They have emailed congressmen, social service agencies and health care providers but cannot find any respite from the 24-hour a day care Georgette needs.

“Some days, I just break down and cry,” Tonioli said. “There just seems to be so little hope and so much frustration.”

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