Every day, thousands of family members around the country selflessly take on the responsibility of being caregivers to loved ones who live with neuromuscular diseases. Whether managing medications and making appointments or braiding hair and brushing teeth, these family caregivers go above and beyond to support the needs of their family members who live with muscular dystrophy, ALS and related life-threatening diseases.
Each November, we take time to celebrate these humble heroes for their often unrecognized caregiving in acknowledgement of National Family Caregiver Month.
The Cochran family, whose 13-year-old daughter Lindsay lives with spinal muscular atrophy (SMA), is one of these remarkable families.
“Lindsay needs full assistance with dressing, bathing, fixing her hair, brushing her teeth … it’s a 24/7 job,” shares her mom, Tracy.
Tracy and her husband, Walt, work together to help Lindsay with her morning and nighttime routines. They take turns waking up every two hours to reposition her in bed. And they are there for her for every moment in between.
“I help Lindsay with picking up her room,” Walt says. “I take time off of work to care for Lindsay when she is ill, and I’m also always willing to watch a movie with Lindsay. She and I have the same movie taste so we’re movie buddies.”
For Tracy, the precious time spent with her daughter keeps her going.
“Sometimes the limitations and high need for care are discouraging for both Lindsay and myself,” she says. “However, I was recently reminded that all of these consistent personal interactions have given us more opportunities to talk. We have a closer relationship than many teenage girls may have with their mom. So in that aspect we count the added needs as a blessing.”
Lindsay’s 16-year-old brother, Trenton, also assists in providing care for his younger sister.
“I pick up things she drops, roll her over when she’s lying in bed, run her medical equipment when she’s sick. She’s my best friend. I’d do anything for her,” Trenton says.
Trenton also takes on other household responsibilities so his parents have more time to care for Lindsay.
“Other things I do are not directly for my sister, but help so that my parents can care for her more,” Trenton says. “These are things like cleaning the kitchen and doing all the laundry. I have had a lot of experience in these areas.”
While Lindsay has a mother, father and brother who are dedicated to helping her overcome each challenge, there are still things Lindsey wishes she could accomplish by herself.
“Sometimes it really stinks having someone constantly help me and not be able to do anything by myself, but it’s also nice that I have people willing to help me do my daily tasks,” Lindsay says.
More than anything, Lindsay wants the freedom to open her locker at school. To dress herself and go to the bathroom on her own. To fix her hair just right.
“These things may not seem like much, but they matter a lot. If I was able to do these things by myself, it would be huge!” Lindsey says.
Recognizing and thanking family caregivers during National Family Caregivers Month is a way to celebrate the efforts of family caregivers, create awareness of family caregiver concerns, teach family caregivers about self-identification and grow support for family caregivers, which is vitally important.
Help us continue to support these humble heroes and their loved ones.
