ALS stole his ability to move, but it didn’t take away his love for family ― or theirs for him
HONOLULU (HawaiiNewsNow) - Risa Fuimaono was diagnosed with ALS nearly 14 years ago.
He can’t move his body, uses a computer to speak, and relies on his family for basic needs.
His wife is his caregiver, but his mind is healthy.
“Sitting on a chair or laying on a bed, doing nothing is harder than you can imagine,” he said, on a recent day.
ALS is a rare neuromuscular disease that renders patients prisoners in their own bodies. While the medical challenges of the disease may be unique, other aspects of the progressive condition are familiar to other families caring for loved ones.
Oftentimes, caregivers for ALS patients find themselves navigating the complicated world of health care and health insurance with few resources and little help.
Many have to quit their jobs; some drain their life savings.
OTHER STORIES IN THIS SERIES:
- ALS robs patients of so much, but loved ones are fighting to make sure they don’t lose quality of life
- ALS is a rare disease, but challenges that patients and families encounter are familiar
Advocates say one solution that could help families is a specialized long-term care facility for ALS patients. It’s a dream that would require significant public and private support, but it’s one the ALS Foundation of Hawaii is fighting for.
Fuimaono gets his round-the-clock care at home.
His wife, Mona, gets a help from the state and Social Security to serve as his full-time caregiver. It’s what the family of five lives on.
“Mona has been my arms and legs over the years. I could not ask for a better wife, companion and mother to our precious children. She is the best,” Risa Fuimaono said.
“The best. Is that right?” Mona Fuimaono responded, laughing. “Yes. His eyes are going to the right. That means yes.”
“I know he’s very thankful,” she adds, holding back tears.
His children ― 12-year-old Samantha, 13-year-old Sophronya, and 15-year-old Zachary ― help with their dad’s daily needs, and talk and sing to him to keep his mind active.
“Even though it’s a small house, it’s full of love,” said Zachary.
While Risa Fuimaono’s kids were young when he was diagnosed, and one wasn’t even born yet, they’re old enough now to know he won’t get better.
“Sometimes it hits me,” said daughter Samantha. “Seeing other people with their dads. It’s like, that could have been us.”
Risa Fuimaono says a long-term care facility for ALS patients would be one less thing to worry about ― and could give his wife and kids a little respite.
“Watching my family every day doing everything for me, especially seeing my children grow before my eyes, and not being able to physically be involved in their lives is devastating,” he said.
“For families living with ALS, they are faced with the same challenges every day. Taking care of their loved ones is a daily routine. Without enough rest and sleep. My wife, Mona, takes care of me 24/7 along with the help of my kids.”
But for now, his family is happy to be there for him ― and want people to know a life with ALS can be full of love.
“Just to know that he’s grateful, you know, it’s good enough for me,” said Mona Fuimaono.
Risa Fuimaono added, “They are my world and my reason for continuing to live.”
To learn more about ALS, go to the ALS Foundation of Hawaii.
Copyright 2022 Hawaii News Now. All rights reserved.