ALS Chapter Also Watches over Caregivers

Daily Herald (Arlington Heights, IL), November 6, 2009 | Go to article overview

ALS Chapter Also Watches over Caregivers


Byline: Maryilene Blondell

"When is enough enough? When is it time to take a break? Am I being selfish if I sit down for 10 minutes?"

These are very real questions caregivers around the country frequently ask themselves.

November is National Family Caregivers Month and, according to the National Family Caregivers Association, there are 50 million family caregivers across the country. Shockingly, 1.4 million of those providing

care are children between the ages of 8 to 18.

Caregiving is as individual as each disease it represents.

The fatal disease of ALS, commonly known as Lou GherigAEs disease, is particularly challenging to caregivers due to the nature of the illness. It is a fatal neuromuscular disorder that causes all of the muscles of the body to deteriorate to the point of paralysis, including loss of the ability to breathe, swallow, talk and walk. The deterioration of muscles and nerves rarely affects the functioning of the mind.

Every 90 seconds someone new is diagnosed with ALS. To date, there is no cause or cure for ALS.

"Even to this day I donAEt have any idea how I did it. I really, really donAEt. When they told me of the diagnosis, I had no idea what was ahead of me," said Carol Brandt, who was the sole caregiver for her husband Bob, who died of ALS in 2003.

Like so many other caregivers, she did it on her own, often times without even being aware of the toll it was taking.

"People at work told me I was looking really bad. I thought I would know when the time was to get help. But clearly I had no idea," she said. "I was completely overwhelmed, constantly tired and emotionally and physically drained."

According to a 2005 National Alliance for Caregiving & The United Hospital Fund survey, 38 percent of all caregivers described themselves as being depressed.

John Pyle, who was diagnosed with ALS in January of this year, agrees. "My problem is that there are too many things I cannot do. You know, physical stuff. And I feel guilty sometimes always having to ask Ruth to do it," he said of his wife. "She and I have always had an unspoken agreement in our marriage. She did all the inside stuff like housework, decorating, party planning, and I took care of all the outside physical stuff. Now she has to do most of it. And itAEs hard for her and itAEs hard for me, too."

Neglecting personal needs, performing physical tasks beyond oneAEs own capability, lack of sleep, poor nutrition or minimal social interaction are all common consequences of the day-to-day care of a patient with ALS. Fully one-third of all caregivers experience a deterioration of their own health after becoming a caregiver.

Nicole Sammartino, patient services coordinator for The ALS Association Greater Chicago Chapter, is very concerned about the toll the disease takes on both the patient and the caregiver. She leads a once-a-month ALS support group in Elmhurst for both patient and caregiver.

"Caregivers donAEt really ask for anything and often times donAEt take care of themselves. So having a support group for the caregivers to talk about the daily issues they face is very important," Sammartino said.

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