Ride For Life: Caregiving requires love and patience

Forty-one years ago, Wallace "Wally" and Margaret "Peg" Brown vowed to take each other for better or worse. For the past three years, that devotion has been underscored with the blinking of an eye.
Wally has been imprisoned in his own body by amyotrophic lateral sclerosis, or ALS, an incurable, degenerative neurological illness commonly known as Lou Gehrig's disease.

It has left him with virtually no ability to move. He is fed through a tube into his stomach, and the ventilator that keeps him breathing does not allow him to speak.

Wally communicates with his wife, his primary caregiver, through short and long blinks of his eyes that translate into letters in Morse code.

"When he started to have more trouble, he decided we should do it so we can communicate," she said.

It was no problem for Wally, 66, to send messages in Morse code: He spent 20 years in the Navy as a communications technician. It took a little effort for Peg to learn it, but now she seldom refers to the crib sheet that helps her decipher the code's dots and dashes, or "dits" and "dahs."

"A 'dit' is a very quick blink and for a 'dah,' he leaves his eyes closed a little bit longer," Peg said. "I spell everything back to him so I know what he is saying."

Wally solved another problem: How to let his wife know when he was trying to tell her something. He had Peg devise a strap that goes around his chin and fastens atop his head. In the part that cradles his chin, he had Peg attach a wireless doorbell.

Wally can move his jaws. When he wears the strap, he can alert Peg by opening his mouth so his chin presses the button and sounds the door chime.

Growing ranks

Those creative measures have helped to make a maddening situation more bearable for Wally, who can't even scratch an itchy nose, let alone write a message. It also helps him to stay in the couple's home in West Wheatfield Township, near Blairsville in Indiana County.

There he's cared for by Peg, who is 60, and by his daughter, Kathy Patz, who lives about a mile away. Peg calls her "my right arm."

The Browns are among the nation's 25.8 million family caregivers who provide assistance to adults age 18 and older with a disability or chronic illness. According to the Family Caregiver Alliance -- a national, nonprofit advocacy group -- home care is a trend that will continue to grow.

Right now, the alliance estimates that one of every four American households -- 22.4 million in all -- is involved in caregiving for someone age 50 or older. By 2007, that number could reach 39 million.

"No, it is not an easy job," Peg said. "This is a 24-7 thing you do. Sometimes he wakes up and needs something during the night, so I am up and down with him."

For the Browns, though, it's not a one-sided situation. Peg works hard as her husband's primary caregiver, but Wally does his part by maintaining a cheerful disposition and even a sense of humor. He has a frequent smile that often turns into a devilish grin.

"He has a very good outlook; he's very cheerful," Peg said. "When the aides are here, he picks on them something terrible."

That was evident during a recent visit by Kathleen Clevenger, of Blairsville, an aide-phlebotomist from Latrobe Area Hospital Home Health Services. She visits the Browns weekly to help Peg move her husband into a wheelchair for a few hours and to give Peg a respite from caregiving.

As Peg introduced her to a visitor, Clevenger quipped, "I'm the other woman."

That prompted Wally to sound his chime and start blinking as Peg deciphered his message: "You wish you were the other woman!"

Laughing as she feigned outrage, Clevenger scolded a grinning Wally. "You are sooo bad!"

"I think this is one of my most favorite visits," she said later. "We have a lot of fun."

Asked how he stays so cheerful, Wally blinked, "Born happy."

Kathy Hall, of Greensburg, is another home health nurse who also visits the Browns regularly. She said she's never seen a patient as severely disabled as Wally stay in such good spirits.

"I think he is truly enjoying life as much as he can," Hall said. "He's just made up his mind that he is going to make it as enjoyable as it can be."

She firmly believes Wally's attitude has helped him to survive, keeping his blood pressure and heart rate steady.

"I am really surprised that he has done this well for three years," Hall said. "Yes, I think they know that something eventually will happen, but we all live that way. It's just something that you and I never think about every day."

Combining their efforts reaps a precious reward for the Browns -- more time together.

Lives interrupted

Until 1998, the Browns appeared to have the kind of life many people might envy. They met in 1963 when Peg's brother, who was in the Air Force, served with Wally at the Pentagon. After the Browns married, Wally's military service -- which included a wartime tour of duty off the coast of Vietnam -- took them to countries such as Scotland and Japan. Their daughter and son, Wallace "Pete" Brown, were born overseas. Pete now lives in Rhode Island.

Rather than live a nomadic family life dictated by military postings, Wally retired from the Navy in 1975, and the couple moved back to Peg's native Blairsville. They built a house along a rural lane on Penn View Mountain. Wally went to work as plant manager for the Blairsville-Wilbert Vault Co., which manufactures burial vaults.

In 1998, Wally was diagnosed with ALS. By 1999, Peg said, he no longer could climb steps at work, and he retired.

ALS occurs when specific nerve cells in the brain and spinal cord gradually degenerate. The loss of these "motor neurons," which control voluntary movement, causes the muscles under their control to weaken and waste away, leading to paralysis.

Knowing what lay ahead, the Browns squeezed in more travel together, taking cruises to Alaska and the Caribbean and a trip to Las Vegas before Wally's condition worsened. For awhile, he was able to move by shuffle-walking, Peg said, but by the end of 2001 he could no longer walk, and he needed a ventilator to help him breathe.

"Since December of 2001, we have taken care of him here at home, learning how to do all the different things you have to do," Peg said.

The decision about whether to use a ventilator or allow the disease to follow its fatal course was never in doubt.

"I know there are ALS patients who won't go on the ventilator," Peg said.

But Wally said choosing the breathing device wasn't difficult. "The alternative sucked," he blinked.

The next decision was where would Wally receive care. For the Browns, a nursing home was not an option.

"Never even gave it a thought," Peg said. "I never worked, so it wasn't like I had to quit working to take care of him.

"It was what he wanted to do. It was his choice."

It is a choice that's becoming more common, Hall said.

"I've pretty much had the same area for several years, and you would be amazed at what goes on in homes," she said.

Hall often sees acute care patients and people who need ventilators -- "normally things that at one time would not have been done in the home" -- being cared for primarily by family members.

There are a number of reasons why, Hall said. The cost of nursing home care plays a part, along with a shortage of nursing care and families' desire to take good care of loved ones.

"The hands-on care just isn't there in institutions any more," Hall said. "It's not that they don't want it to be there, it's just not there."

Although caring for someone at home can be exhausting, she said, so can monitoring a loved one's care in a nursing home.

"I don't mean to make long-term facilities seem bad, but none of them can take care of someone the way a family member can," she said.

Learning curve

Two things make a family member a good caregiver, Hall said.

"Love and patience. I've come across people with education and knowledge, but that doesn't mean anything. If the love and patience are there, there are very few mistakes."

She praises Peg's efforts on Wally's behalf.

"He is so totally dependent for everything," Hall said. "She is one of the most devoted caregivers I have ever met. She has devoted herself to him.

"What she does is remarkable, and what she does is not slipshod, it's perfection."

Peg does everything for her husband. She gets him into a Hoyer lift that raises him out of bed so she can change the sheets. She gives him nebulizer treatments four times a day to keep his lungs clear. She suctions his ventilator tube, bathes him, wipes saliva from the corner of his mouth and changes the TV channel, since watching television is Wally's primary pastime.

"I just watched what the nurses and aides did and that's kind of how I learned to do things like give him a bath," Peg said. "I think everything is second nature to me now."

Much of the couple's success has to do with simply getting things into place, she said. But Peg has some words of caution for those who consider caring for a loved one at home.

"It's a big responsibility to take on," she said. "It's not something you do for a few hours and then say you're not going to do it anymore."

Peg estimates that in the first 14 months she took care of Wally, she didn't leave the house more than once a month. But family caregivers do need a respite, she said.

Hall agreed that getting help from visiting health professionals and other family members is key to keeping caregivers from becoming overwhelmed or exhausted.

Peg admitted that, as with most married couples, everything is not always "peaches and cream." There are times she gets angry with Wally. "I don't baby him just because he has ALS," she said.

But overall, she has no regrets. Having to give up things in life because of her caregiver's role hasn't been hard to do.

"No, it isn't," Peg said, with tears in her eyes, "because whatever I have is here with him."