Caring for adults with disabilities can take toll on parents' health

Editor's note: This is Part 2 of "Caregivers Crisis: When help isn't enough for parents of disabled adults," a three part series. Part 1 | Part 3

"I'm not going." "I don't feel well." "I'm sorry." "I love you."

Patricia Fisher hears these words repeatedly from her son, Christopher Lumb, 30.

She hears them when she wakes him before 6 a.m.; when she calls from work, checking whether he's moved from his bed or whether depression has again gotten the best of him; when he's at the dinner table, hardly touching his meal. Whenever they're together.

But other times, he'll smile, strike a pose, flex his biceps -- becoming the Chris of five years ago again.

He's in there.

These moments remind Fisher about the battle she is fighting, the one she pledged never to give up when she shunned the advice of the doctor who told her -- in 1986 -- to send her second child, born with Down syndrome, to live in an institution.

Fisher, 57, never has doubted her decision. But 30 years later, her son's needs have changed and so has her capacity to care for him by herself. Facing unexplained heart trouble that's sent her to the hospital twice this year, Fisher wants Chris to move into a group home with other men with disabilities, where she thinks he'll thrive.

But that decision, once made, isn't easy to carry out.

Battles, victories

Chris is among 8,327 people with disabilities in Illinois waiting for residential placement. Another 10,344 are on the state's main waiting list to get other forms of help.

Of the roughly 220,000 Illinoisans with disabilities, only 27,800 are receiving services from the state, according to the Department of Human Services. In this state of budget wars, partisan bickering and an $8.5 billion backlog of unpaid bills, it's clear Illinois won't be playing the hero anytime soon.

Families often are the heroes, and Fisher, of Naperville, is no exception, emerging victorious in many of the battles that challenge parents when their children with disabilities are young.

- Mark Black | Staff Photographer When Chris Lumb of Naperville at last gets up for the day, he follows his own routine governed by his obsessive-compulsive behaviors.

She protected Chris' health until he had open-heart surgery at 15 months and emerged as a bundle of strength and energy. She advocated for him at a good school, where he learned and got involved. Chris loved wood shop class, sang on stage, went to dances, was featured in a high school newspaper article.

"He's always been treated just like everyone else," Fisher said. "I never told him he can't do anything."

He took guitar lessons. "Row, Row, Row Your Boat" reverberated from his room. He thrived in special recreation bowling and has medals to prove it. He stayed in school in a transition program until age 22 and worked at a retirement home and an office.

Meanwhile, Fisher set up a special needs trust to secure Chris' financial future and spelled out who will care for him when she dies.

She got him onto that long state waiting list for disability services and eventually got funding for a vocational program he could attend during the day, working with other adults with disabilities in Downers Grove to sort, shrink-wrap, package and label manufactured products.

Fisher doesn't regret the effort involved in any of these preparations for her son to have a full life even though he was born with a chromosome disorder that produces cognitive delays and higher risk for heart defects, respiratory problems, leukemia, thyroid conditions and Alzheimer's disease.

"He's still my child," she says. "I'm going to take care of him."

Home for Chris

- Mark Black | Staff Photographer Chris Lumb of Naperville spends more time yawning and complaining that he doesn't feel well during dinner than he does eating, as it often can take him up to two hours just to eat a small portion of his meal. His mother hopes he can be approved to live in a group home, where the young man with Down syndrome can live with peers and gain a more structured life.

Chris reaches out to hug his mom, then walks haltingly toward the stairs.

Dinner took him an hour and 21 minutes. He ate two HoHos, a glass of non-lactose milk and a few tiny bites of a thin pork chop and stroganoff noodles.

His glacial pace of eating and his slide into depression began in 2012, when he started having problems swallowing. His weight dropped from 130 pounds to about 107 as his diet waned to nothing but meal-replacement shakes. His tonsils were removed and his esophagus was stretched, and some of his appetite returned. But not his personality. His mom doesn't know why.

There was no one turning point she can identify when the rambunctious Chris, who made friends with everyone and coaxed a laugh out of even the most straight-laced companion, turned into the sad Chris. In May he stopped attending his vocational day program, the one Fisher fought to get him into. He hadn't been participating anyway, his mom learned. Employees reported Chris' daily activities: sitting off to the side, occasionally getting into fights and staring at the fridge waiting for others to vacate his favorite lunchtime chair.

- Mark Black | Staff Photographer Patricia Fisher tries to coax her 30-year-old son, Chris Lumb, into eating dinner one night in their Naperville home. It's one of Fisher's daily struggles, which have worsened lately as Chris has become depressed.

"I can tell that he's sad and I don't want that for him," Fisher says. "I want him to be happy. I want him to be healthy. I want him to go out and I want him to be with people and experience life."

She thinks his ticket to life lies in a group home.

Parents aging

But so do the loved ones of the others in line for residential services from the state -- 6,307 of whom are awaiting facilities staffed 24/7 with nurses and caregivers, while 2,020 others need a place with less support.

Some of those waiting are among the 32,732 people with disabilities in Illinois estimated to be living with caregivers age 60 and older, according to the 2015 State of the States in Intellectual and Developmental Disabilities report by the University of Colorado.

"Many aging parents want their kid to go out and do their own thing, be their own individual," said Hollis Gorrie, director of home-based services at Clearbrook in Arlington Heights, which supports more than 7,000 people with disabilities across 160 communities. "They're riddled with a lot of issues from stress in the home or not having any kind of break."

There's no one-size-fits-all approach for the perfect housing for people with disabilities. While group homes were seen as best practice for years, Greg Fenton, director of developmental disabilities for the Illinois Department of Human Services, says they're not ideal for everyone. Many people with disabilities want more choice in daily activities than a group home offers "so people can live the life they want," Fenton said.

- Mark Black | Staff Photographer Patricia Fisher of Naperville gives her son Chris Lumb some of his daily medication. Chris, 30, who has Down syndrome, often does not get out of bed until nearly noon and his regressing behaviors cause anxiety for his mother.

But for someone like Chris, Fisher says a small-scale group home with up to seven other residents would have its benefits.

There would be structure. Employees provide that by setting wake-up times and mealtimes and schedules for recreation and work, relaxation and lights-out.

There would be motivation. The other residents would provide that for Chris, just by being there.

"He's kind of like a 'Yeah, I want to do the same thing you're doing' type of person," his mother says.

There would be help with cooking and transportation and -- the most desirable outcome for Fisher -- a chance for Chris to more fully pursue that American dream of happiness.

"I'm hoping that he gets into residential living soon," Fisher says, "so that he can start living a productive life."

Accessing services

One of the main complaints against the state waiting list that decides the futures of Chris and thousands of others, a list called the PUNS or Prioritization of Urgency of Need for Services, is the unpredictability.

"You have to be lucky to get pulled off the PUNS," said Kim Zoeller, president and CEO of the Ray Graham Association in Lisle, which serves about 2,000 children and adults with disabilities in and near DuPage County.

Disability advocates say the choice of who gets funding after a wait on the PUNS seems "random," but there is some order to the process.

Needs are classified as planning, critical, emergency or crisis.

"The way the aging caregivers often get the services they need is to really be in a horrible crisis," Zoeller said.

Against all logic, Fisher has applied for her situation with Chris to be considered a "crisis."

She's been in touch with her case manager at DayOne PACT in Lisle, one of the regional agencies where families of people with disabilities must sign up to get on the PUNS list. Together they've applied for emergency residential services, seeking that decisive crisis designation. Situations that meet criteria as a "crisis" are most likely to get speedy assistance, with the division of developmental disabilities expected to provide services within 24 to 72 hours.

The state defines a crisis as an imminent risk of abuse, neglect or homelessness, which must be proved by factors including:

• Death of a caregiver

• Inability of caregiver to meet the disabled individual's needs, jeopardizing health, well-being or safety

• Physical and/or mental injury or sexual abuse inflicted on the individual

• Homelessness

• Behaviors by the individual that put family member(s) at risk of serious harm

- Mark Black | Staff Photographer Patricia Fisher makes one of her many morning climbs up the stairs of her Naperville duplex to the room of her 30-year-old son, Chris Lumb, who has Down syndrome. Before Fisher heads to work in Lombard, she tries -- and frequently fails -- to get Chris up and going for the day.

Fisher is Chris' sole caregiver. She's a single parent, divorced since 1990, when Chris was 3. Chris' father has been visiting once a week for about an hour, but that's been going on only since Christmas.

"I've gotten to the point where I can't deal with it anymore," she says. "I can't keep doing this; it's all on my shoulders. It's starting to take a toll mentally and physically."

Fisher has been suffering anxiety and is taking medication to control it. She has colitis and inflammation of the colon and is worried about her heart.

As she wakes up each weekday at 4:45 a.m., tries to get Chris out of bed, puts in eight hours at her mortgage financing job in Lombard and keeps her house in order, Fisher is unsure of the root of two scary heart episodes. They left her with shooting, stabbing pains in her chest, sweating profusely, barely able to breathe, thinking she was having a heart attack. A heart monitor she wore for 30 days this summer didn't pinpoint the cause.

"Hopefully we can get in," she said, hoping to get the prized "crisis" designation and find the right home for her son by early next year. "I'm hoping that I can start feeling a little bit more relaxed and maybe my health will get better."

Seeking 'his old self'

- Mark Black | Staff Photographer "The old Chris" is in there somewhere, says Chris Lumb's mother, Patricia Fisher of Naperville. But the 30-year-old with Down syndrome has become depressed and stopped attending his daytime work program.

Chris turned 30 on July 5. The day after America celebrated its independence with barbecues and fireworks, this formerly rowdy, fearless young man remained stuck in lethargy.

Chris won't move in the morning, except maybe to take the meds designed to help his depression -- which thankfully, his mother says, are beginning to help. When he emerges, half the day will be over. He'll hardly interact with his mom, except to shuffle downstairs and sit at the dinner table for an hour or so, barely touching his food.

Until Chris' application for a subsidized group home gets sorted out, his mother will continue to feel stuck, worrying that the real Chris is burrowing further and further into the sad Chris and wondering if her heart can take it.

"This is part of the old Chris -- always trying to make people laugh," Fisher says, watching her son hamming it up, posing for pictures, giving her hugs. "I look at him and I'm like, 'He's his old self again.' And then it changes and he's not."