ALS patient families face physical, psychological effects
Through counseling, support groups and fighting back, families like Tom Earl's must find ways to move on after losing a loved one to ALS, a neurodegenerative disease.
PHOENIX, ARIZ. — When Tom Earl lost his wife, Sue, to ALS, he lost the love of his life and his best friend.
“I guess I’m too old fashioned,” said Tom, who was married to Sue for 43 years. “I’m old enough that I had one girlfriend, and it was Sue. We had a great life together and traveled all over the country and did all kinds of things. I haven’t gotten over her.”
In October 2004, Sue was diagnosed with ALS. The following year, two days after Christmas, she died.
Something Tom misses most about his wife is her brilliant, ever-present smile. It must’ve been contagious, because Tom, too, smiles a lot, albeit sometimes sadly when remembering Sue.
Tom Earl is only one of the many family members and friends Sue left behind, including a son and a daughter.
At any time in the United States, there are close to 30,000 people living with ALS. People typically live two to five years after diagnosis, according to the ALS Association.
Since ALS attacks motor neurons, it causes people to lose control of their muscles. All mental abilities stay intact while the body degenerates, according to the ALS Association.
As Sue’s health worsened, she had trouble walking, talking and swallowing. Tom said he had to feed her through a plastic syringe.
“She was so frustrated ‘cause she couldn’t talk and she couldn’t hug her kids,” he said.
ALS affects everybody differently.
Dr. Shafeeq Ladha, director of the MDA/ALS Center at St. Joseph’s Hospital and Medical Center, said it’s hard to tell a patient how long they have to live with the disease because ALS is extremely variable.
“Some patients may have a very rapid onset and very rapid disease course over six months or so,” he said. “And some patients may have a very slow disease course which progresses over many years, even up to ten or more years.”
Symptoms are also variable, as Tom observed. He said he knew a man in his mid-30s who lost control of his arms, which “swung like spaghetti.”
Taking care of Sue during her decline affected his own health, Tom said.
“I wanted to be the caregiver, so I was lifting her into the bed, into the wheelchair, into the shower stall, onto the commode,” Tom said. “I didn’t eat; I lost 30 pounds in two months. It’s a bad disease.”
Tom, a man whose wrinkles show both age and kindness, said he was so exhausted all the time lifting Sue and trying to keep her comfortable that he should have had someone help him.
Once, while trying to move Sue from the front seat of their van to her wheelchair, he accidentally dropped her. “…She sort of crumpled into the seat, and sort of wedged down between the dash and the seat, and we were out in the middle of Wyoming, the middle of nowhere,” Tom said, “and I thought, ‘She’s going to crunch up and not be able to breathe. I can’t lift her.’”
Tom said his biggest regret is not being able to do everything for Sue that she needed, even though people have told him he did everything he could.
“I think I did, but it wasn’t good enough sometimes,” he said.
Tom recommended that other families caring for a loved one with ALS seek as much support as possible through groups, such as those through the ALS Association. He also said people should seek therapy for help dealing with issues of death, something he never did.
“Looking back, I think I would’ve been served better if I’d done that,” he said.
People go through a lot of stress when confronted with the reality that someone they love has a terminal disease.
Most families try to stay positive and family-oriented during the course of ALS, Tom said, but others become bitter and resentful.
“They didn’t know what to do, so they got mad at the family and the caregivers,” Tom said of people he knew struggling with the foreboding loss. “I saw a couple people that ended up divorcing the patient in the middle of the disease because it was so bad. That’s not good.”
Dr. Ladha also recommended that people see a counselor, because family dynamics change drastically during the disease and can be hard to deal with. A spouse is now a caregiver; a breadwinner is now a dependent. These shifts have profound psychological effects which are very difficult for the patients and the families, he said.
“Instead of being equals, now one has to care for the other,” Dr. Ladha said. Patients often feel guilty because their spouse, who they’re supposed to love and care for, is spending all their time caring for them, he said. On the other hand, their care-giving spouse often feels resentful or overwhelmed.
For a higher quality of life, Dr. Ladha advises all patients to find a multidisciplinary clinic they can be a part of. At a multidisciplinary clinic, patients can see not only a physician but also a variety of therapists -- physical therapist, occupational therapist, respiratory therapist, nutritionist – that help them modify their lifestyles.
Patients who attend a clinic often live longer, too, he said.
Life after Death
Sue and Tom’s daughter, Kathryn Brower, said in a recording for the ALS Promise Fund that she has found positives in her mother’s death. She has gotten much closer to her dad, she said.
Every day, Kathryn said she tries to live up to the model her mother left: living with courage, dignity and class.
“When you have a really, really bad situation, you have to pick up yourself and go on,” she said.
Tom said he noticed from his support groups that many men were seriously dating again within a year of their wife’s death.
He said hasn’t dated since Sue died, and he isn’t sure if he’ll ever get used to her being gone.
To help honor Sue, Tom has thrown himself into working with the ALS Association to garner research funding. Since ALS has no cure, research is necessary to make any positive steps toward combating the disease, he said.
This May was his seventh year going to Washington to talk to members of the legislature and show them, with a picture presentation, what happens to families when someone has ALS, he said.
“We’ve gotten quite good at trying to make congressional aides cry,” Tom said.
Fighting for funding is rewarding; the association has been able to get millions of dollars of research money from Congress and the Department of Defense, he said.
Dr. Ladha also stressed the importance of research.
“We’ll never conquer this disease or probably even figure out what causes it unless we have patients who are willing to be a part of research programs,” he said, adding that most people don’t understand the purpose of research.
“They think, ‘Oh, they just want to use me as a guinea pig,’ but really it’s about trying to find out what causes this disease so that we can find a cure or an effective treatment,” he said.
Besides working with the ALS Association, Tom said he spends his days working around the house and doing things he enjoys, like riding his motorcycle.
“I’m busy, but then when I turn the lights out and it’s actually quiet in the house, unless the cats come and jump on me, it’s very different,” Tom said. “And I’m trying to get used to it.”