Lucas Aldrich was a few months old when pediatric neurologists told his parents he had lissencephaly — a rare condition that involves brain malformation — and likely would not live to adulthood. He would have disabilities and be at risk of seizures and respiratory infections.
“At that moment, your heart stops,” his mother, Alissa Aldrich, said. “We started our new normal, and then, within one week, he ended up getting pneumonia and had to be in the intensive care unit.”
Nine years later, Lucas cannot walk, talk or feed himself. But his face lights up with a smile every few minutes. He has participated in triathlons with his 11-year-old brother’s help. His mother calls him “the happiest boy you could ever imagine.”
Alissa Aldrich is one of many Idahoans who are full-time caregivers for a child, spouse, parent or loved one. In many cases, those Idahoans left the workforce to be unpaid caregivers. At first, Aldrich went down to part-time at Micron Technology, where she was a financial project manager. Eventually, she stopped working altogether.
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Aldrich and others say the job of caregiver is fulfilling but isolating, vitally important but overlooked and misunderstood. They say caregivers need something that is hard to find and use in Idaho: respite services, which provide caregivers a break and time to recharge or take care of other demands in their lives.
“Parents who have no other option for respite [will instead] take their child to the emergency room so they can be admitted overnight,” Aldrich said.
A 2014 report from a survey of 261 Idaho caregivers found that only 27 percent had used respite care in the past six months, and most of those said it failed to cover their needs. Barriers to using respite care included the difficulty of finding and paying for it, concerns about leaving their loved ones in the care of a respite workers, and loved ones refusing care from someone else.
Aldrich created Lucas House, a nonprofit that is raising money to build a center in Idaho where children like Lucas could stay overnight while their families get respite.
She also is part of the Idaho Caregiver Alliance, a group that seeks to draw attention to the work caregivers do and to improve their lives and those of their loved ones. Respite care outside of hospice — when Medicare covers it — is one of the group’s key goals.
HELP IS OUT THERE. FINDING IT IS HARD.
That ICU stay in Lucas’ infancy turned out to be a good thing. It put the Aldriches in contact with a social worker, who helped them find resources, including Medicaid. The state-run public health insurance has helped pay for Lucas’ medical care, a special bed and shower, and a home-health aide who has worked with the family for six years.
When Lucas was younger, Alissa and Brian Aldrich decided that instead of keeping him at home in a sterile environment, they would give Lucas as many experiences as possible. He goes to elementary school. He joins the family in outings around the Treasure Valley. He has been able to surf and ski. His bedroom walls are decorated with ribbons and memorabilia from races with his brother, Noah.
But it has taken constant advocacy and community support to give Lucas a high quality of life and to keep him at home, his mother said. Several people told the Statesman they have struggled to find good home-nursing care — or any home-nursing care.
The absence of a solid support structure for caregivers takes a serious toll on the economic and social well-being of families, businesses and communities across Idaho.
Idaho Caregivers Alliance
“Family caregivers manage increasingly complex medical and/or psychological conditions without the support and training they need,” the alliance says in a summary of its 2016 action plan. “The supports that do exist are fragmented and difficult to access.”
Most caregivers interviewed by the Statesman voiced gratitude for friends and neighbors who help them. They just wish there was more support and that it was more easily available.
Idaho’s caregivers cross the lifespan, from caring for children with significant needs to caring for a spouse near the end of life.
An estimated 23,000 people in Idaho have Alzheimer’s disease, with about 85,000 family members taking care of them, said MacKenzie Rodgers, executive director of the Alzheimer’s Association’s Greater Idaho Chapter.
Rodgers wants those caregivers to get better access to resources such as community education, respite care and support groups, especially in rural Idaho. That is especially important, she said, as a growing number of retirees flock to Idaho.
“Nobody hands you a manual when you start taking care of someone with Alzheimer’s,” she said.
In some cases, the need for a spouse to become full-time caregiver arises suddenly.
Vera Noyce and her husband, Stephen, were married for more than 50 years. For much of that time, she was his primary caregiver.
Nearly 70% Idaho caregivers who are employed full- or part-time, while caring for their own children or aging parents
Stephen was 30 when he began having symptoms of Friedreich’s ataxia, a genetic disease that damages the nervous system. He progressively lost motor function and eventually had to use a wheelchair.
Stephen Noyce retired from his career in information systems for the state in 1995, at age 55. Two years later, Vera Noyce left her job with Friends of Zoo Boise to stay home with him full-time.
The couple found professionals — sometimes through an agency, sometimes not — to provide home health services. When Stephen Noyce qualified for hospice, which Medicare covers, that provided more help, she said.
“It’s confining, and it’s very stressful, because you’re constantly worried about your spouse, about being gone,” she said.
It can be difficult for both caregivers and the person being cared for to “actually face the reality of where you are” and admit that it’s time to call a trained professional, she said. That leads to emergency situations where the caregiver is exhausted.
“Once we got the help, it was easier for me. ... I could get away for an hour or two or three, as long as someone was here to help him,” she said.
For about 18 years, Vera Noyce cared for her husband. He died peacefully at home last December at age 75.
HOPE FOR FUTURE
Alissa Aldrich said her mission to build Lucas House was inspired by similar centers in Phoenix and in the Bay Area. Parents of children like Lucas cannot simply hire a babysitter, she said. Medicaid does provide some personal-care services, but respite is not always covered, according to several people interviewed by the Statesman.
When she learned of the Phoenix center, called Ryan House, she imagined what it could do in Idaho. She said there is a movement among caregivers nationwide to build those centers with amenities like aquatic therapy, pet therapy and activities for the children, as well as medical providers on staff.
Lucas House received federal 501(c)(3) nonprofit status in 2014. So far, it has raised about $160,000. Aldrich is focused on trying to find a health care partner to provide medical staff.
“Respite is a huge issue,” Aldrich said. “It’s overwhelming, and there is no place [to take a child]. ... But there is a movement that’s starting that recognizes it’s a need.”