What it's like to care for your kids and your chronically ill partner

One month after their 2019 wedding, Amanda Stevens and her husband received devastating news: Eric, a former NFL player and firefighter, was diagnosed with ALS. Amanda now cares for him while raising their 2-year-old daughter, making her part of a small group of spousal caregivers who are also parenting young children in America.

In the United States, only 12% of the estimated 47.9 million unpaid family caregivers of adults care for their spouse or partner. When dependent children are added to the equation, Stevens's situation becomes even rarer.

According to disability studies scholar Laura Mauldin, spousal caregiving is often overlooked, as most family caregivers are adults caring for aging parents. Young caregivers looking after children and spouses tend to get lost in the statistics and are not commonly associated with caregiving. Mauldin, who became a caregiver to her partner at 27, understands the uncommon reality of younger caregivers. She explains that people struggle to accept this "out of order" situation and find it hard to imagine that children are also involved.

This group of caregivers face unique challenges and struggle to balance their roles with other demands. The competing responsibilities can feel insurmountable. "I struggle with being a mom and a caregiver," says Stevens. “I’m trying to be the best mom and wife I can be. But, these two family members do require a lot of my help."

In her memoir Already Toast: Caregiving and Burnout in America, author Kate Washington notes that children don't wait until after the challenges of caregiving to grow up. Washington spent more than two years as her husband's primary caregiver during the "intense, crisis phase" of his illness stemming from a rare T-cell lymphoma.

She had to make tough choices to create moments of normalcy for her children, sometimes facing judgment. "I did definitely try to carve out space where I could be with my kids, not in the realm of a family devastated by illness," she tells Yahoo Life. Washington reflects on feeling overextended and having to prioritize between being a mother and a caregiver. "I feel like I spread myself too thin, trying to juggle all of the things."

Mike Lindquist became a spousal caregiver when his wife suffered an amniotic fluid embolism during childbirth, causing a series of strokes and cardiac arrest. Speaking about raising his now 4-year-old daughter and caring for his wife, he emphasizes the logistical challenges of this kind of caregiving. "I always need to make sure my daughter and wife are taken care of whenever one needs something. [It's a lot of] careful scheduling and communication."

According to the Well Spouse Association, spouses and partners who become caregivers experience unique dynamics and losses compared to other caregivers. As their caregiving roles take over, their relationship shifts, leading to a loss of the companionship they once shared.

The most challenging part, Lindquist says, is not the physical or financial burden but the absence of his partner. "To have that person that supported you — they're not there anymore for some of us. It's very isolating. That emotional toll is the hardest part for me."

Ilana Sidorsky — whose husband was diagnosed with late-onset Pompe disease, a rare genetic disorder which causes muscle weakness and breathing difficulty, in 2017, shares similar feelings. "It's a really lonely place to be in," she says. "Even if people are trying to be empathetic, it's very isolating and hard."

People often ask these caregivers how they manage to handle everything. Washington recalls a conversation with a friend who had a similar caregiving situation. “She said 'I had a lack of other reasonable options.’ There was no escape and you just had to do the things," says Washington.

"A lot of people ask, how do you do it? How do you stay so strong?" adds Stevens. "I respect that, but I think when you're in a situation like this, that's your only choice. My daughter and my husband are counting on me, and anyone in my position would do the same thing."

Questions about how caregivers are managing their responsibilities can unintentionally create a binary between disabled individuals and caregivers, according to Mauldin. "They are a saint or some superhero.” This ableism, as she describes it, categorizes disabled partners as unproductive or charity cases, overlooking the political aspects of disability and caregiving, which are “deeply interconnected.”

The experience of having children after a health crisis or diagnosis varies for each individual. Stevens explains that starting a family was always a shared goal, but after her husband's terminal diagnosis, they faced uncertainties. “But it never made me not want to do it. It just raised a lot of questions of how we would do it," she says.

Sidorsky and her husband faced a “crushing” blow when his diagnosis was confirmed through genetic testing, fearing they might not be able to fulfill their dream of becoming parents. Since then, his condition has rapidly deteriorated. Their son celebrated his first birthday earlier this year. The decision to have a child, she says, was "a really long journey to figure out."

Choosing to focus on her husband's abilities rather than his limitations allows her to fully appreciate what he can do. "[They] are best friends," she says of her spouse's relationship with their son. "They laugh and play together, and he reads to him.” Sidorsky eagerly looks forward to when her husband can engage in parenting from a more complex emotional and intellectual perspective as their son grows up. “I'm really looking forward to when he's older and the job isn't as physical. Our son is what keeps him alive; [he] is what he lives for."

Stevens and her husband find solace in the fact that having their daughter was the best decision they ever made. Despite his condition, he is able to be present at home with them every day and share his passions for nature and sports with her. “He comes to the park with us, he reads her books. She’s always yelling, ‘Look, Daddy!’"

Lindquist describes the unique bond between his wife and their daughter. Despite her condition, his wife can still react and laugh, creating a special connection. “She laughs at the same things she's always laughed at," he shares. "So my daughter likes to go into a room and sit in her lap and make silly faces or do things to make her laugh." The highs, however, can be bittersweet. “I always have in my head that it isn't fair that she can't participate the way she deserves. There is always an element of sadness.”

Regarding the statistics of spousal caregivers with children, Mauldin says, "Sometimes we think 'oh, that’s just a rarity,' but it's really not. We're also in a child care crisis. We [our country] have done a poor job overall when it comes to care."

Sidorsky, the only member of her spousal support group who became a parent post-diagnosis, believes that there should be more support options for couples in similar situations. "People don't talk about wanting to become parents because it just seems insurmountable," she says. "There are days when it does feel insurmountable. It's absolutely worth it, but there needs to be more in place to help.”

Facing ALS, Stevens says, has opened her eyes to issues within the health care system and the clinical trial process. Through their foundation, axeALS, their goal is to provide more patients with access to experimental therapies like the one her husband received, called NurOwn. Stevens says they aren't looking for a cure, but a treatment to “help Eric live with ALS instead of dying from it. Eric's living proof that experimental therapies can work, and we want to give the opportunity to more patients."

Washington hopes to foster understanding that caregiving is not an isolated phenomenon. “It's something we should all understand is a life stage we should expect to experience. It's an almost universal human experience."

"I really hope we can just have more honest conversations,” Mauldin says. “Maybe if we have more honest conversations, there can be some kind of cultural shift.”

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