Jayanthy Thiagarajah was a fiercely independent woman and a devoted grandmother. In early 2021, having recently lost her husband, Jayanthy was still in mourning when she took a couple of nasty falls that required medical attention.
She lived in Boston, but she came to a hospital in Chicago so two of her daughters could care for her during her recovery. The surgery appeared to be a success, but after another fall at the one-month follow-up, the family noticed Jayanthy was not improving. In fact, her condition was worsening. Her doctor referred her to a neurologist at the same hospital, where she underwent further testing and was diagnosed with ALS.
“We were devastated,” says her daughter Jenn. “My siblings and I were in disbelief and didn’t accept her diagnosis as we hadn’t noticed any symptoms. It was a confusing time and things happened fast. We spent most of our free time talking to doctors and learning about ALS. There were periods where we would form a different diagnosis amongst ourselves and hoped the doctors were wrong.”
Because of her mom’s declining mobility, the Chicago hospital that gave her the initial ALS diagnosis recommended that Jayanthy be sent to an assisted living facility. Due to visitor restrictions at the facility related to COVID, Jenn and her siblings didn’t want to leave Jayanthy alone. They decided to share the responsibility of looking after her.
Jenn continued her ALS research and discovered that she lived very close to one of the most renowned research and treatment centers for ALS – the Les Turner ALS Center at Northwestern Medicine in Chicago.
“I took my mom to see Senda Ajroud-Driss, MD for a second opinion. Following confirmation of her ALS diagnosis, we decided that we wanted Dr. Driss to take over the care of our mom,” says Jenn. “Dr. Driss was clearly passionate and dedicated to the field of neuromuscular diseases. Along with her came a team of physicians including pulmonologist Lisa Wolfe, MD, who were devoted to caring for my mother and making her comfortable.”
Jayanthy and her children also worked closely with the Les Turner ALS Foundation’s ALS Support Services Coordinator Julie Stowell, RN on everything from obtaining equipment to discussions on hospice care. When Jayanthy asked to return home to Boston, Julie suggested an air ambulance service that safely transports patients from anywhere in the world. In September, Jenn’s brother arranged for her to fly to his home in Boston.
“The pilot and the nursing staff shed tears and said they had never met a patient who seemed to have chosen happiness despite her suffering,” says Jenn.
Jayanthi passed away in December surrounded by her loved ones, less than 8 months after her ALS diagnosis.
“My mother’s kindness and outlook on the world was incredible even during her worst moments,” says Jenn. “ALS is one of the worst diagnoses a person can get. The ALS journey can bring communities and families together but life sucks for the patient and the family. There is no other way to really put it. “
“It has been just over a year since my mom passed away, and I can say that it sticks with you. I am sad that my mom passed away too early, but I also know that she received the best care possible.”
“You do come out of ALS knowing that there is nothing more important than loving and caring for your loved one. It’s important for families to know that there are people who care and who will help,” says Jenn.
Please make a donation so that others who have been impacted by ALS, like Jenn and Jayanthy, will continue to receive the support that they need.
