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“Hospice Care: It’s About How You Live,” is the theme of National Hospice Month. And no words could be more appropriate for Fairview Lakes HomeCaring & Hospice client Gayle Johnson of North Branch, who became a hospice patient in February 2004.

“Hospice has changed my life completely,” says Johnson.

The change for Gayle has come in the form of regular nursing visits, emotional support and pain control. Gayle suffers from two extremely painful conditions, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and a related, rare hereditary condition known as Madelung’s disease.

The Madelung’s disease causes fatty tumors to form on the upper portion of Gayle’s body. Although Gayle has had the disease since birth, the rare condition went undiagnosed for years. She was born with a fatty tumor on her back and underwent her first surgery to remove a 40-pound tumor at age 17. Since then she has undergone 40 more surgeries for the Madelung’s disease and other health problems.

For most of her life, Gayle has been determined to live fully despite her illness. She pursued a career in bookkeeping and accounting, started---and played the bass guitar in--her own band, known as Wildwood Express, and, to the immense benefit of all those around her, responded to a life of pain with a delightfully dry and witty sense of humor.

Because her condition is rare and difficult to diagnose, Gayle suffered for years without knowing exactly what was wrong. “I had no fever, and my symptoms didn’t fit M.S. (multiple sclerosis) or M.D. (muscular dystrophy),” she says. When normal doses of medication didn’t help Gayle’s unbearable pain, “They thought I was looking for drugs,” she says. Then, at last, a nerve biopsy showed that her nervous system was, as Gayle puts it, “all messed up.”

When Gayle’s condition prevented her from continuing regular employment, she offered to help a friend of her mother’s whose husband was dying. She understood the moods and the needs of someone whose health was deteriorating and assisted the family until the husband’s death. A short time later Gayle began to see Dr. Paula Rehder of Fairview Lakes North Branch Clinic. As Gayle’s condition continued to deteriorate, it was Dr. Rehder who referred her to hospice for at-home care and assistance and pain control.

For Gayle, there is no cure in sight; and only adequate pain control is enabling her to live her life with dignity. Today, with the help of a power wheelchair, a trained service dog and regular visits by Fairview Lakes HomeCaring & Hospice, Gayle continues to reside in her own home. The dog, who has been specially trained to meet her needs, helps her pick up items she drops, pulls clothes from the dryer and sounds the alarm when the doorbell rings or the oven timer goes off. He will “brace,” standing stiffly to help support Gayle when she stands and to help her get up again when she falls.

HomeCaring & Hospice’s home health aides come twice a week to help Gayle with personal care, and housekeeping services help Gayle keep her house spic and span. Gayle’s HomeCaring Hospice case manager Lynn Morrison, R.N., visits regularly to deliver medications and to check on dressings and supplies. Regular calls and visits from Gayle’s mother and sister, who live nearby, round out Gayle’s day.

“This is the best quality of life I’ve had in 10 years,” said Gayle. “If I need a helpful device, Hospice usually has it or will find it. I have no doubts that I will get the medications that I need.” As a hospice client, Gayle has also seen a wound care specialist and received home physical therapy.

And when even Gayle’s amazing sense of humor is no longer enough to sustain her, HomeCaring Hospice social worker Gretchen Kirvida provides emotional support.

“We try to do some problem-solving and a little counseling together,” says Kirvida. “And at those times when Gayle questions the purpose of her life, we talk about what a personal inspiration she is for me and for others. From Gayle I have learned how to cope with tremendous challenges.”

Hospice care has so changed her life that Gayle says, “I would dread it if I couldn’t have it. Everyone who has long-term health problems should check it out.”

Fairview Lakes HomeCaring & Hospice Director Karen Brohaugh cites the 2004 hospice month proclamation, which states, “Hospice care provides patients and families the highest quality pain management and symptom control, caregiver training and assistance, and emotional and spiritual support, most often delivered in the home. Hospice allows people to live fully until the final moments, surrounded and supported by loved ones, friends and committed caregivers.”

For people like Gayle Johnson, that proclamation is more than words. It’s a promise she can rely on.

To learn more about home health and hospice services, call Fairview Lakes HomeCaring & Hospice at 651-257-8850.

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