When the Kindness of Caregivers Meets the Cruelness of ALS

October 3, 2023

While Sandra Bullock is most well-known for her characters on the big screen, one of her most important roles has played out quietly behind the scenes. In early August of 2023, her long-time partner, Bryan Randall, passed away after a three-year battle with amyotrophic lateral sclerosis (ALS). Sandra’s sister praised “the band of nurses Sandra assembled who helped her look after him in their home.” 

Whether you’re rich and famous, or you fill a more traditional role in society, you probably want the same thing for your loved one — to have the best caregivers and nurses tend to them in their own home. And that is just what we do at BrightStar Care®. 

What is ALS? 

Before becoming a branch manager at her locally owned and operated BrightStar Care agency, Lynn Taylor was a caregiver for a young woman who discovered she had ALS. Also called Lou Gehrig’s disease — named after the All-Star baseball player — it is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. 

Most people with ALS eventually lose the ability to walk, write, speak, swallow and breathe — yet they often maintain their cognitive abilities. Of course, every individual’s ALS progression looks different. The mean life expectancy after diagnosis is two to five years, with others living 10 years or longer. 

“Some people with ALS will never develop changes in thinking or behavior. For others with ALS, there will be mild changes... For some people with ALS, changes in thinking and behavior are quite significant and severe,” according to the ALS Association. Renowned physicist, Dr. Stephen Hawking, retained his brilliant mind and defied the odds with his longevity. 

The average age for diagnosis is 55 and it is 20% more common in males. Yet, this cruel disease doesn’t always follow these guidelines, as Andy Smith* will tell you. His wife, Lisa*, was diagnosed with ALS in her thirties. (*Names have been changed for privacy.) 

The couple didn’t have any children, and because Lisa was diagnosed at an early stage, she and Andy decided to make the most of the time she had left, while she still could. This included traveling the world, which Andy captured on video. 

As the disease progressed, Lisa would watch these videos with Lynn, telling her all about the adventures she and Andy shared. She continued watching these videos after she lost her voice and Lynn would see tears rolling down her cheeks. 

Tips From an ALS Caregiver 

One of the most important things Lynn thinks families should do when a loved one is diagnosed with ALS is to start preparing for each stage before it arrives. For example, practice using texting or other communication devices while your family member can still verbally communicate. 

Although there are many progressive steps, some of the milestones Lynn remembers was when Lisa began to communicate by texting, then texting with just one hand, which then progressed to tapping out messages using just her right thumb. Anticipating that her thumb would eventually lose its ability to tap, they chose small signals — such as one blink for yes and two blinks for no. 

In addition to preparing for each stage of progression, here are a few other suggestions when you or a loved one are diagnosed with ALS or feel that the symptoms point to the disease

  • Consider a second opinion. Since ALS is a relatively rare disease, many doctors have limited experience diagnosing the condition. It’s estimated that as many as 15% of ALS cases are misdiagnosed. The ALS Association has a list of Certified Centers and Clinics.  

  • Ask about clinical trials. In addition to the treatments your medical team recommends, participating in a clinical trial can potentially provide your loved one with benefits — while also informing future treatments for other individuals with ALS. You can find more details about clinical trials on the ALS website

  • Join a support group. Interacting with others who can empathize with your family’s situation and provide advice based on their personal experience is a valuable resource. Search for a local ALS support group here. Online resources can also be helpful — just be cautious about vetting the group. 

  • Review your financial and legal situation with experts. This may include discussing what healthcare resources you have available now, healthcare power of attorney (POA), financial POA, updating a will, estate planning and other essential details. 

  • Create a bucket list. It may not be as expansive as Lisa’s global travel. It might include visiting distant family members and friends or having them visit you. You may want to create a video of memories to share with your children and grandchildren, or a recording of you reading books to them. Perhaps you’d want to splurge on tickets to your favorite performer, a Broadway show or sports team. 

  • Anticipate and prepare for next stages. In addition to Lynn’s suggestion to plan for changes in communication, you can also look into what equipment you may need and what in-home care you want. You can also begin to work with your employer to discuss your availability and what leave options are available to you. Each organization is different; you can find preliminary information about the Family and Medical Leave Act (FMLA) here

  • Plan and complete home modifications. You will probably need to adapt living spaces to accommodate medical equipment, promote safe mobility and optimize comfort. 

Ongoing ALS Support for Your Loved One 

Andy was beyond dedicated and did everything he could to meet all of Lisa’s needs. But as ALS progresses, the lack of muscle control gets worse, making it more difficult for a spouse or family member to be the sole source of support for their loved one. Andy spent time researching the best equipment to help as his wife reached the next stage.  

Even with top-notch equipment and power lifts, eventually the lack of muscle control can make it very difficult to provide the mobility needed for basic care like taking a bath. During her early days with Lisa and Andy, Lynn would typically spend three hours a day, three days a week, helping Andy with Lisa’s needs like bathing. She would then spend time with Lisa so Andy could run errands or manage other responsibilities. 

Choosing Home Care for ALS 

The type of support Lynn offered is invaluable. Built upon our commitment to nurse-led care, every client receives a personalized plan of care from our Director of Nursing, with continued oversight by a registered nurse. This allows the BrightStar® Home Care team to provide individualized care that evolves as the client’s needs evolve. 

Because our local agencies offer a full continuum of services — from companion care to skilled nursing — we have the staff available to support each stage of a client’s needs. And since ALS is a progressive disease, we pay attention to the details and provide additional support when it’s needed, such as a ventilator.  

Not only do our caregivers communicate with the BrightStar Home Care agency to ensure continuity and the proper resources, but you also have access to a nurse if you have any questions or concerns. Whether you’re just starting the ALS journey or you’re somewhere down the road, we invite you to reach out to your local BrightStar Home Care team to ask about any of our in-home medical or non-medical services your loved one may need. 

Compassionate Care When It Matters Most 

Most families want to keep their loved ones at home until they peacefully pass. And yet it’s such a hard thing to go through. That’s why it’s so important to have a support system like the one Lynn provided for Andy. 

Lynn explains that for many caregivers and nurses, helping people through this difficult time is their true calling. It’s what they’re meant to do. Their time spent with these special clients will remain in their hearts forever — just like those movies Andy created.  

That’s the thing about movies. The images on the screen can move your heart. But more often, it’s what happens offscreen that really matters. As Lisa’s days were drawing to a close, she and Lynn watched the movies of her life with Andy and tears streamed down her face. “Are you okay?” Lynn asked. 

And Lisa blinked once for yes. 


Find a BrightStar Care® Location Near You 

Looking for in-home care services or assisted living for your loved one or a reliable medical staffing partner for your organization? Our experienced local care team members are ready to help. Find a location near you, contact us online, or call 866.618.7827 to speak with a local care expert and learn more about how BrightStar Care offers A Higher Standard®.