November is National Family Caregivers Month, a time to honor the vital role caregivers play in the lives of their loved ones. This month, ALS TDI will spotlight inspiring stories of family members who provide essential care for those living with ALS, celebrating their compassion, resilience, and unwavering support.

Since Hannah Ungricht was first diagnosed with ALS in March of 2023, her friends and family have stepped up to provide her with the care she needs. Her husband has served as her primary caregiver, along with two of her best friends, who come over to help her shower a few times a week. She has siblings who live on the East Coast, far away from her home in Washington State, who will come visit and pitch in when they can. Her parents now live with her and do what they can to help. Other friends from her community will bring dinner from time to time.

Then there’s Lilly – Hannah’s 14-year-old daughter. At first, Hannah and her husband wanted to shield Lilly from the day-to-day realities of caregiving for someone with ALS. However, as Hannah’s symptoms progressed, she noticed her daughter struggling more and more.

“Finally,” says Hannah, “we talked to her, and she got emotional, and said ‘I want to help.’ So, we started letting her help with little things. And then she just started getting in there and wanting to do more and more.”

Lilly says that finally being able to pitch in with her mother’s care helped her start to deal with the emotional toll of watching her disease progress.

“I had a purpose and a part to play,” says Lilly. “So now whenever I help her, even though sometimes it's late and I'm frustrated, it's a good experience to have because it really does bring us closer”

Now, Lilly serves as one of Hannah’s most important caregivers, along with her father – tackling the difficult, intimate tasks all ALS caregivers face. She helps her mother shower and go to the bathroom using a Hoyer Lift. She turns her in bed and puts cream on her bedsores. She’ll even help check her breathing machine and put in her catheter.

Caregiving for someone with ALS is a 24/7 job, and now Lilly and her father share it as a “tag team.” Lilly can put in the time needed in part thanks to a rather unique educational situation – she attends high school partly remotely. Some days she attends classes on campus with other students, while at other times she participates from home. She says that she’s very thankful for her schedule, which allows her to be available to her mother when she needs to, but also to have a space to live life like any other teenager.

“I'm able to stay and help when I need to,” she says, “and then I can have fun at school. It’s a safe place because everybody knows what's going on. It’s a very tight and loving community.”

For Hannah, having her daughter as a caregiver has meant far more than just another pair of hands on her care team. It’s provided an opportunity to spend precious time together – and have many difficult but important conversations.

“We’ve had a lot of funny experiences,” says Hannah, “and we‘ve had a lot of emotional experiences. But it’s forced us to be closer together, in a good way. We get to talk about things that are hard, but she knows she can ask me any questions. And having her help, I feel peace, because I have my baby girl with me, and we get to spend time together making memories. Some of them are not that great. But some of them are pretty awesome.”

Lilly says that, since she started helping Hannah more, her fear and anxiety have improved. She’s even inspired her 5-year-old younger brother to pitch in, who will often offer to give Hannah a back or foot rub when his sister and father are hard at work caring for her. For other people her age in similar situations, Lilly has a clear message – even though it might be scary, it’s important to take every opportunity to connect with your loved one as possible. 

“You are going to regret not spending enough time with them,” she says. “You have to make time for them. Even if you're scared and hesitant to make that time, I think you should, because it will be worth it.”

To learn more about Hannah, Lilly, and their family, follow Hannah on Instagram @HannahsALSJourney

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