When thinking about care-givers, most people imagine baby boomers tending to elderly parents. But there’s another kind of care-giving that is often more long term and comes with its own unique set of challenges: parents taking care of children who are so disabled that they will never move out on their own.
It becomes a lifelong struggle that can leave caregivers exhausted and lonely, unable to socialize, travel, or even hold down a job.
There are currently more than 11 million Americans providing unpaid care to a family member or friend who is between the ages of 18 and 49, according to the National Alliance for Caregiving.
That number includes people like Steve and Alison Watt who have been caring for their daughter, Alexa, since she was born. Now, at 21, Alexa is certainly more mobile than she was as an infant, but she still requires 24-7 supervision from her parents.
Though her parents noticed that there was something off about Alexa when the little girl was just 9 months old, it wasn’t till she was 3 years old that doctors diagnosed the problem: autism severe enough that she would need care all her life.
“It’s like the kind of care you have to give a baby or a toddler,” Allison Watt explained to NBC chief medical editor Dr. Nancy Snyderman. “It’s all consuming. It’s hard to even articulate what that’s like because Alexa is never left alone. It’s very intense. It’s stressful because she has to be within our eyesight at all times.”
That stress and the anxiety and exhaustion that come with providing 24 hour a day supervision can take a toll on caregivers of any kind, experts say.
“Caregivers see themselves as having poorer health,” said Gail Hunt, president and CEO of the National Alliance for Caregiving. “The parents, who if they’re caregivers, can feel isolated because other people don’t have this problem.”
That’s something the Watts understand all too well.
“We sort of feel sometimes like we’re watching the whole world spin around us,” Allison Watt said. “But then when we look at each other, you know, we’ve got everything. We’ve got love, caring and nurturing. She gives us a lot of love.”
Watt says her daughter helps put things in perspective.
“She teaches us the only thing that matters is love – and we are all OK,” Watt explained.
The biggest source of anxiety for caregiving parents is the question of who will take care of their child when they are gone, said Dr. Michael Klag, dean of the Johns Hopkins Bloomberg School of Public Health, whose daughter has autism.
“When my first wife died suddenly that crystalized the issue for me,” he told TODAY.com. “What will happen when I’m gone?
“When we’re taking care of our parents we think, ‘how can I get through this and provide dignity and the best care,’ but with kids the question is ‘how do I build a system that will take over when I’m not here.’”
Though Klag’s daughter is fairly high functioning and has finished high school, “she would never be able to live independently,” he explained.
Those kinds of thoughts are always running through the minds of Steve and Allison Watt.
“I look into the future and I know how much I love my daughter, I know how much Steve loves his daughter – and to trust that kind of care and that kind of love to other people is a frightening thing,” Allison Watt said. “I don’t know if the family and friends that surround us now will really commit themselves to be there if we’re not there.”
Klag hopes that the new center he’s set up will grapple with those questions as well as public health policies that could be put in place to help those with autism spectrum disorder get therapy that will help them become more independent and find ways that they can contribute to society.
“My daughter is a sweet sensitive kid,” Klag said. “She doesn’t want to be useless. She wants to do something productive. We’d like a program system that would help facilitate that.”