For every Texan living with ALS, a caregiver is standing by their side every step of the way. The selfless care of their loved ones with ALS is an inspiration to our community. That’s why for the first time in ALS Texas history, Diane Tobin, an ALS caregiver, will be honored as the ALS Hero for the 2022 Shoot Out ALS Houston Clay Shoot.
Diane smiled as she remembered the day she saw Jim for the first time. It was around 1968 and they were both juniors at the University of Houston. Diane noticed him playing cards in the student union. “He was really cute…and I remember sitting down at the table around where some of these tournaments were, hoping he would notice me.” After several weeks, Jim finally noticed Diane and asked her on a date, and the rest is history.
The two lovebirds were married for 47 great years, raising a beautiful daughter together and later adoring their grandson. Jim and Diane found much joy spending time in their Houston community. They held season football tickets for the University of Houston for nearly 30 years. The two were very active, playing tennis, going white water rafting, and even running half marathons together. In January 2016, their lives changed forever when Jim was unexpectedly diagnosed with ALS.
After the diagnosis, their ALS Clinic team encouraged the Tobins to travel and take advantage of the time left to make memories. “I didn’t really understand how fast things could change,” Diane Shared. They truly took that advice to heart starting with a dream vacation.
That summer Jim and Diane took a European cruise to Paris. “We went through Paris, all these beautiful little towns. And it was just a wonderful memory, just a beautiful memory that I really do cherish because it was a lifelong dream and we did it.”
By the time they left for the trip, Jim’s ALS progressed so that he couldn’t walk very far. Diane took pride in pushing Jim around in his wheelchair, embracing every moment together in the City of Love. “Something I would tell a caregiver is not to be so afraid to do things…You’d be surprised you can do a lot more than you think you can,” she shared.
Just a few months after their trip, Diane planned a massive 70th birthday party for Jim. Nearly 100 friends and family showed up to celebrate him and the impact he had on their lives. And of course, the couple continued to show their devotion to the University of Houston, remaining ticket holders and frequently attending games with their alumni friends. When Jim moved to different stadium sections to accommodate his wheelchair, his fraternity brothers followed. “They were always just fantastic people in our lives and maintained that friendship,” Diane shared.
Finding the ALS Community
Initially, after Jim’s diagnosis, Diane shared they were scared to attend support groups for fear of what they would see. “We did not for like the first nine months go to any support meetings and this is the truth,” Diane shared.
When the two finally decided to go, Diane described the experience as amazing. Jim was eager to attend every meeting after, hurrying Diane to eat so they wouldn’t miss a single minute. And for as long as they could, the Tobins attended every connection group and Diane every caregiver support group.
Another way the two found hope was through the Texas Walk to Defeat ALS. Their team, Tobin’s Seals [Seeking to End ALS] became heavily involved as the years went on. Jim was even honored as the ALS Hero for The Woodlands Walk to Defeat ALS in 2019. In a touching speech, Diane shared:
Don’t stop living and challenging yourself. While many people let their illness define them and drop anchor, all of you and my husband Jim is evidenced by your being here at this ALS walk that you have chosen to redefine your life. You are living a life that has purpose and meaning.
Diane meant that with every fiber of her being, for Jim, for herself, for other Texans with ALS and their caregivers.
Evolving as a Caregiver
When a loved one is diagnosed with ALS, your life is turned upside down. For Diane, it threw her into a new world of being both a wife and caregiver to her husband. Though the journey was tough, Diane took every challenge in stride.
She once shared that during their trip to Paris, the front wheels of Jim’s wheelchair caught on the cobblestones. This caused him to fall onto the street, luckily with no injuries. Diane reflected on the incident, “We were just getting started…a bump in the road would not stop us.” She carried this spirit with her throughout their entire ALS experience.
As Jim’s ALS progressed, so did her caregiving experience evolve. As he would lose function of muscle groups like his hands, Diane added more duties that she didn’t have before. She spent several years thinking she had to do everything alone, but soon she realized it wasn’t possible. Diane noted how difficult it can be for caregivers to step back from their loved ones with ALS. Many think nobody does it as well as I do or nobody can take care of him as well as I do. But it’s a slippery slope to isolation and feeling trapped as a caregiver.
“At some point, you have to get help, and I did,” Diane shared. She was amazed to find the outside caregivers brought new things into Jim’s life that she couldn’t. They brought more laughter and adventure. And most importantly, they gave Diane the chance to invest time in herself so she could spend more cherished moments with Jim as his disease progressed.
Holding on to Love
Throughout Jim’s battle with ALS, Diane held on to love. Though her life was now filled with caregiver responsibilities, she never lost sight of their true relationship—husband and wife. “You have to be careful that you don’t lose your identity of being their wife or mother or whatever it is and start to become only a caretaker. They’re that same person. He was the same person I fell in love with,” Diane tearfully shared.
Remembering those things, Diane always strived to make sure Jim felt empowered to make his own decisions, even if she wasn’t ready for them. Diane described this time as the hardest thing she’s ever had to experience. As it became more difficult for Jim to breathe on his own, he was admitted into the hospital for seven weeks. The last three of those weeks, Jim was placed on a trach.
She noted that Jim never wanted to live with a trach and made the decision to forgo that treatment. Though Diane wished to hold on as long as she could, loving Jim also mean learning to let go.
I had to respect his decision because it was his life. When I would try to say, ‘Oh no we can work this out. We can do it.’ He would always say to me my decision…he would mouth it to me once he couldn’t talk. That’s what I’m talking about—empowering the person with the disease. – Diane Tobin
Jim passed from ALS in fall 2021. He lived a wonderful life surrounded by Diane, his daughter, and his siblings by his side. Though Diane cherished all 47 years together with Jim, she only wished she had more time.
The Next Chapter
Losing a loved one to ALS is devastating, yet it’s especially difficult for family caregivers. Diane describes the emptiness she felt after Jim’s passing. “After being a caregiver for so long, it’s like all-consuming to lose that job and lose that person.”
Today, Diane still holds on to those precious memories she and Jim made together—from their wedding day to raising their daughter, to football games at their alma mater, to Paris, and even in finding community through ALS.
That community has helped Diane as she walks into this new chapter. She’s connected with a group of five other ALS widows who frequently spend time with one another. “The ALS Support group gave me support after I lost my husband from a group of women that could totally understand…what I’m going through, the sadness because they’ve been there,” she shared.
She encourages other caregivers to lean into the ALS Texas community and find that support because it’s impossible to do it on your own.
This is a great organization because it helps people in the worst places…you helped alleviate that [fear] in our hearts and made the journey one we could make. – Diane Tobin
You can support ALS Caregivers like Diane Tobin by joining us for the 2022 Shoot Out ALS Houston Sporting Clay Shoot on March 24, 2022. Your support allows ALS Texas to continue investing in the selfless ALS caregivers in our community through mental health workshops, niche support groups, educational presentations, and more!