Thursday, November 12, 2009

Clarence “Buddy” and Carolyn Moore’s plans to travel were dismantled in February when Mrs. Moore was diagnosed with a motor neuron disease. Since then, the District residents’ lives have changed dramatically, as Mr. Moore is his wife’s caregiver.

“My job has become impossible to do alone,” Mr. Moore said. “It’s one of the most devastating things that have happened to us. I have to do things for two people.”

Fifty million other people across the U.S. are experiencing the same kind of hardships and challenges Mr. and Mrs. Moore face, and the National Family Caregivers Association (NFCA) is bringing attention to the issue. Since 1994, the NFCA has dedicated November as National Family Caregivers Month to recognize all caregivers across the country who are taking care of loved ones with any kind of illness.

In 1994, “you had to explain what caregivers were; now that isn’t the case. Awareness has gone up exponentially,” said Suzanne Mintz, president and chief executive officer of NFCA.

For Caregivers Month, the local NFCA chapters are distributing gift bags across the country.

“We know we are making a difference, and it’s a gratifying feeling,” Ms. Mintz said.

The theme this year is “Speak Up,” and the local chapter of the ALS Association for the Maryland, Virginia and D.C. area is joining the cause. It serves nearly 485 families in the area.

Mr. Moore, 72, has been his wife’s primary caregiver since February, when she was diagnosed with amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig’s disease. The illness’s causes are not completely known, and it is found most commonly in people between the ages of 40 and 70. Motor nerve cells that operate muscles slowly die, and people slowly lose control of movement. According to the ALS Association, approximately 30,000 Americans are living with the illness.

Mrs. Moore, 59, can no longer stand or use her hands or arms and is beginning to lose her ability to speak.

“I’m my wife’s caregiver, 24 [hours a day] and seven [days a week],” Mr. Moore said.

Colleen Maguire, director of patient and family services for the local chapter of the ALS Association, said the chapter has been taking part in Caregivers Month for all of the nearly 10 years she has worked there.

“We want to let the family caregivers know that we’re thinking of them, too,” Ms. Maguire said. “The families that take care of ALS patients do the work, and they are just as important to us. We want to recognize them.”

In the past, the local ALS Association chapter has sent out recipes for apple cider, pumpkin pie and chicken soup to caregivers in the area. With the help of Chesapeake Spice Co. in Belcamp, Md., it is able to distribute these gifts every November. Ms. Maguire said positive feedback comes from the people the chapter serves, including cards and e-mails.

“Knowing there are others who are sincerely concerned about caregivers is good,” Mr. Moore said. “Me and Carolyn would be lost without [the ALS Association].”

He said the association also provides support-group meetings for caregivers and patients in the area to learn about the process and to “expect the unexpected.”

There are many other caregivers who take time to help Mr. Moore and his wife at their home in the District. Their daughter. Danielle Lindsey, 40, and Mrs. Moore’s sister, Diana James, are two people who stop in to read to Mrs. Moore and massage her legs and back, which gives Mr. Moore an occasional break.

“This has changed my life totally,” he said. “I have to rub her nose and scratch her ear, but in spite of all that, I’d prefer this situation than have her taken away from me in an instant. We take it one day at a time. One week at a time.”

The Moores gathered with family and friends on Nov. 1 to participate in the ALS Association’s Walk to Defeat ALS in the District. Twelve members joined their team to support Mrs. Moore.

Caregivers, Mr. Moore cautioned, need to take care of themselves so they can take care of their loved ones, and he has a message for other caregivers like himself.

“See this as a part of life. Look at it in a positive way opposed to the negative,” Mr. Moore said. “Focus on the fact that you completed this day and go on to the next. Try to spend quality time together, stay positive and don’t forget about yourself.”

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