ALS At-Home Care & Family Respite Care

In August 2018, my brother-in-law, Matt Smith, was diagnosed with ALS. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move, and breathe.

Anyone who knows Matt knows he is a fighter. Over the last six years, Matt has helped to advance ALS research and treatment by participating in clinical trials, drug therapies, and new treatments. Matt’s participation in these was centered on the hope that it would help support breakthroughs for future patients.

Matt and his wife Marie have two wonderful children: Sofie, age 7, who loves to dance and is incredibly empathetic and intelligent, and Jordan, age 5, who is a fearless ninja and a devoted brother to Sofie and their cherished pets, Rory and Byfuglien. Their family is also supported by loving grandparents—Matt’s mother, Alice, and Marie’s parents, Paul and Karen, who have shown immense and selfless support. Sadly, Matt’s family recently lost his father to cancer, but it’s comforting to think he’s still watching over Matt. Despite the challenges posed by ALS, a condition that affects everyone in their family, Matt and Marie continue to build a beautiful, thriving life for their children. Watching his children grow up has been one of Matt’s greatest joys. This is made possible due to their immense support from family, friends, and incredible community members.

As Matt's disease progresses, the care he needs increases. Marie and Alice are Matt's primary caregivers and additional at-home care is imperative to ensure Matt receives the extent of care he requires. Matt’s recent ALS clinic visit reflected changes in respiratory function and they anticipate new challenges in the months ahead.

Full-time at-home care in Marie's area costs roughly $1,000/week with part-time care costing half the amount. Home care can include assistance with daily activities like transferring, bathing, toileting, dressing, grooming, medication administration, and eating. It can provide much-needed breaks for primary family caregivers. This fund will only serve at-home care that better supports Matt and respite care for Marie, Alice, and his family.

Thus far, this fund has paid for a full year of part-time care, which was about $25,000 at $500/week. My goal is to fund at least another 12 full months of care. Marie's mother, Karen Becker, is managing funds.

No family should have to feel lost in a disease. While ALS has undoubtedly brought pain and grief to Matt and his immediate and extended family, love and resilience persevere. Their experience underscores the importance of support and connection with others in navigating challenging times.

Thank you for supporting families with ALS.