A fatal struggle: Devastating disease ALS robs Bradenton couple of their dreams

BRADENTON -- Roger and Carol Schmidt were out bicycling together when the first signs of Carol's ALS surfaced. She lost her balance and fell off her bike. Carol had been biking 20 to 30 miles every week, and she was in good shape. The couple knew something was wrong.

The diagnosis came in October 2012, just months after Roger retired from his position as a senior sales manager for Hoshizaki American Inc., a refrigeration and air conditioning company. Carol had retired years earlier from a successful career as a travel agent, and the two were ready to embark on their own adventures as a retired couple.

Amyotrophic lateral sclerosis stole the Schmidts' plans to travel the world, kayak, canoe and bike together. Instead, they're confined to their West Bradenton apartment, spending the money they saved for a very different retirement: waiting for death to steal Carol away, even as Roger does everything in his power to keep the love of his life alive and comfortable.

ALS, also known as Lou Gehrig's disease, diminishes muscle strength and impairs physical functions as it kills nerve cells. It steals all movement, and eventually the ability to swallow and even breathe. It is progressive and fatal. The ALS Association estimates about 30,000 people in the United States have the disease at any given time; every 90 seconds, someone dies from it.

About 1,500 to 1,800 ALS victims live in Florida -- less than 1 percent of the state's population, according to the ALS Association Florida Chapter. Because so relatively few have been diagnosed with ALS, there are no facilities in the state to house and provide the constant and intense care ALS patients need. Even nationwide, the options for ALS patients and their families are few.

Since Carol, now 69, was diagnosed, the disease has progressed aggressively -- faster than Roger, 70, can keep up with costs of care.

He describes their world as a "Catch-22."

"The better care she gets, the longer she lives," Roger said. "And the longer she lives, the more she suffers."

He wants to help his wife of 47 years live out her final years with the highest quality of life possible, but his own health suffers under all the stress and grief. The disease is slowly destroying his quality of life. His money is running out, and he is losing patience.

It's difficult to explain to an able-bodied person what it's like to have ALS. Only those afflicted with the disease truly understand, and their caretakers learn by proximity.

"If you want to know what she goes through, lay down for half an hour and don't move anything," Roger said. "If your eye itches, don't itch it."

High cost of disease

Proper care for an ALS patient costs far more than the average annual income of a middle-aged adult.

"The average life expectancy upon diagnosis is two to five years, and to sustain quality of life with all of the equipment and care they need, it's approximately $250,000 per year per patient -- it's truly an awareness and funding issue," said Julie Niehoff, director of marketing and communications for the ALS Association Florida Chapter.

Roger estimates he spends somewhere between $70,000 and $100,000 on Carol's in-home care each year. He's hired a three-person private nursing staff he pays from his retirement funds. In addition to paying for nursing care and outfitting a vehicle to transport Carol, the family's grocery bills have doubled.

"We feed her a lot of fatty foods to keep her weight up," Roger said. "Stuff like whipped cream and ice cream."

Other costs will come as a result of the disease. The wood floors in their apartment have marks from wheelchairs and other equipment, and they'll have to pay to repair them. The air conditioning is constantly kept at a low temperature to keep Carol comfortable, as her body generates more heat than normal.

Roger fears bankruptcy. Carol is on Medicare, which does not reimburse the 24-hour private nursing costs. Assisted living facilities, according to Florida law, can't accept patients who cannot "stand and transfer" or coordinate other daily living activities.

Florida's Department of Elder Affairs maintains an assisted-living facility directory and a nursing home guide. Ashley Chambers, spokeswoman for the department, said she is unaware of any ALS-specific facilities in Florida.

"I feel because we don't qualify for assisted living facilities, I'm being punished for being judicious and saving for retirement," Roger said. "It's all going to this disease."

He regrets not waiting even longer to retire.

"When I retired, Carol wasn't sick and if I would have waited, I could have gotten insurance," Roger said.

Early ALS symptoms are not the same for everyone. The disease usually involves a gradual onset, and early symptoms are often misdiagnosed or overlooked because they're so subtle, according to the National Institute of Neurological Disorders and Stroke's ALS fact sheet.

The Schmidts searched for ALS-specific nursing homes and found one in New Orleans, La., built by former New Orleans Saints player Steve Gleason. The Team Gleason House can treat up to nine people. The only other ALS-specific nursing home, the Leonard Florence Center for Living, is in Chelsea, Mass., and can house up to 10 people. Aside from those two, Niehoff was unable to find any other ALS-specific nursing homes in the country.

Even if the Team Gleason House or the Leonard Florence Center for Living had room for Carol, she doesn't want to leave Florida. The Schmidts have lived in Bradenton for 36 years, and Carol still loves the state's scenic flora, wildlife and blazing sunsets.

Collin, their 46-year-old son who also lives in Bradenton, takes her to the beach to "keep her in touch with nature." Carol plans outings with Collin days in advance to give herself something to look forward to. The two visit the beach to watch the sun set and sometimes just to watch the tide roll in.

Tireless search

Niehoff knows of three Florida nursing homes that have accepted ALS patients in the past. Those facilities are in Jacksonville and St. Augustine, three to four hours away. Carol wants to die in her own home.

"Nobody wants this," Roger said. "She wants to die here, but it's killing me and I don't want to die before her because of my kids. This can break you as a human being."

Roger and Carol don't know where to turn, and help has been extremely limited. The Schmidts received a $1,000 grant from the ALS Association to help pay for costs of Carol's care for the first time last year. The recent Internet fad known as the Ice Bucket Challenge brought some public awareness to ALS but it did little to help the Schmidts, frustrating Roger more than anything.

"It's disheartening to see they're dumping ice on people and the people (living with ALS) will never see the benefits of the research," Roger said. Of the $115 million the challenge raised for the ALS Association, $77 million "has been committed to find effective treatments and a cure for ALS, through our global research effort," Niehoff said. The rest was used for patient and community services, public and professional education, fundraising and external processing fees, according to the ALS Association website.

Tidewell Hospice and the Muscular Dystrophy Association chapter in Sarasota have also helped the family, providing caregivers with information and Carol with equipment.

The MDA covers more than 40 neuromuscular diseases including ALS, and it offers specific programs, equipment and initiatives for families living with ALS. The MDA has a holistic approach to ALS diagnoses and tries to help families living with the disease, said Paula Orandash, associate director of family support and clinical care.

MDA helps coordinate treatment for the complex disease by providing all the doctors and medical staff needed at one site, helping patients get as much medical care as possible in one visit. Roger occasionally takes Carol to Sarasota Memorial Hospital's ALS/MDA clinic, but there is little else the doctors can do.

Medicare helps pay for medication and a nurse who visits once a week to monitor vitals and massage Carol's muscles to help with spasms.

While Roger appreciates all of the help provided by Tidewell Hospice, MDA and the ALS Association, none of the organizations can ameliorate the burden of Carol's daily care.

"They're terrific organizations, but they're limited in what they can do," Roger said.

Nursing home options

Carol largely communicates with an alphabet board and a row of numbers; ALS has stripped her of all physical autonomy except the ability to move her head from side to side. She uses a laser pointer attached to a headband and spells words by pointing to each letter on the board.

"Hospice has been great to us," Carol adds, spelling it out on her letter board.

Roger wants to find a caring facility with a compassionate staff who will take care of Carol, but Tidewell Hospice is strictly for end-of-life care, and no one knows how much time Carol has left. Doctors aren't able to provide a prognosis for Carol because the disease is so unpredictable.

"There's no set pattern other than death," Roger said.

Nursing homes don't seem to be a viable option, either.

"In order to try to keep my peace of mind and get her better care, we have tried nursing homes and private homes," Roger said. "They interview us and then confidentially tell us 'we can't do it.'"

Nursing homes can't accept Carol because of the intense time and individual attention she needs.

"Overall, it's just manpower," Roger said. "They just don't have the staff to concentrate on one person. It's too much for them to handle."

Some nursing home residents may be able to reach out and press a button when they need assistance, even if their mobility is limited. Carol can't.

"Part of it is her and part of it is the disease," Roger said. "Someone needs to feed her, medicate her, hydrate her and take her to the bathroom. She takes medicine that dries her out, so she needs hydration at night. She also needs help breathing at night, but she breathes on her own during the day. She used to suck through a straw to drink, but now she can't do that anymore so we have to use a syringe to give her a drink. There's not a pre-determined time when she needs it, so someone has to be here."

Carol's condition could keep her out of any nursing home.

"Nursing homes are required to do an assessment before admitting a patient into their facility, and it may be because her disease is in an advanced stage that they can't accept her," said Shelisha Coleman, spokeswoman for Florida's Agency for Health Care Administration. Coleman referred to the federally mandated Comprehensive Assessment and Review for Long-Term Care Services pre-admission screening program handled by Florida's Department of Elder Affairs.

Finding a nursing home for any patient is always a process, regardless of the circumstance.

"Each nursing home facility operates under their own criteria for admittance," Niehoff said in an email. Those criteria vary based on capacity, whether the home is skilled or custodial, and whether the money for care comes from long-term care insurance, Medicare, or private pay. According to her administration's website, Medicare is accepted at most Florida nursing homes and would pay for at least some of Carol's care in a nursing home if she were accepted.

The level of care a patient needs is also a factor in admittance, Niehoff said.

Caring for ALS patients requires a certain level of knowledge nursing homes may not have. The ALS Association can help facilities prepare for housing ALS patients if the facilities are willing to undergo extra training.

"Our care services staff offer in-service presentations to nursing home staff to ensure they understand the unique aspects of caring for an ALS patient once admitted," Niehoff said.

According to one ALS Association presentation used for nursing home training, nurses must be able to recognize which parts of the body are affected by ALS, recognize and manage symptoms as they are related to certified nursing assistant care, and become familiar with durable medical equipment, such as oxygen accessories, hospital beds, mobility equipment and a myriad of devices.

"Typically, nursing homes that have a contract with a hospice organization will accept a person with ALS who is under hospice care," Niehoff said. Though Tidewell has contracts with most nursing homes in the Bradenton area, the organization's chief medical director said the contracts have no influence on the admissions process.

"The short answer is that we have no control over which patients a nursing home accepts or does not accept," Dr. Neville Sarkari said. "Medicare requires that when we take care of a patient in a nursing home, we have a contract that states that both parties will follow Medicare rules, but the contract does not give us any control over who the nursing home admits or does not admit." Timothy Wolfrum, Tidewell's communications director, said the contracts with facilities in which Tidewell patients are treated are required for accreditation.

Even if facilities had properly trained staff and the right equipment to house Carol, Collin would still be concerned.

"I've been in the medical field a little bit and I've worked at a hospital," Collin said. "I know people get complacent and harsh and they don't care for people like their family would care for them." Collin would only be comfortable leaving Carol in a facility with a staff who cares for her like their own mother.

"To have a facility with that caliber close to here would be the best," he said. "But if you had one facility in the state, it would be booked solid."

Finding capable caretakers

When Roger realized he wasn't going to find another solution for Carol, he addressed her needs himself.

Care for a patient with advanced-stage ALS is not easy. The Schmidts have had trouble finding in-home nurses they can trust. They've been through about 20 since Carol was diagnosed.

"They leave or get burned out," Roger said.

It's rare the family can find compassionate, patient, competent and reliable caregivers like Allison, Carol's main caretaker. Allison and Carol have grown so close that when Carol is upset and begins to cry, it is difficult for Allison to hold back her tears. Allison constantly checks to make sure Carol is comfortable and has what she wants and needs.

Before Carol finishes spelling a word on her letter board, Allison knows what she is going to say.

"Allison can read my mind," Carol said. The two are close because they communicate in a language no one else understands. When Carol notices something in the room or she wants to speak, Allison is often first to recognize Carol's needs and calls the room to attention: "Carol, do you want to say something?"

Allison spends about eight hours at the Schmidts' during the day and four at night. She alternates shifts with two other caretakers, Stuart and Jessica, so that one of them is at the house around the clock. (At the request of Carol and Roger, the caretakers' last names have been omitted so others won't try to hire their trusted, skilled nursing staff.)

Collin heads to the apartment every day after work to help with dinner and other caretaking duties. Occasionally he is the nighttime help, too, when the scheduled caretaker can't come. He stays with his mother all night and goes to work the next morning.

"It runs me ragged, but you gotta do what you gotta do," Collin said.

"He's the best son a mother could ask for," Carol said.

"And a father could ask for," Roger added.

A daily soldiering

Roger and Collin work with Allison to take care of Carol every day. Their days begin before 7 a.m. when Carol awakens.

One of the three prepares Carol's medications, so they are ready for her. Immediately when Carol awakens, someone must massage her legs to get lactic acid moving and help her be more comfortable.

Next, the care team gets the bathroom ready. It takes two people to move Carol from her bed to the bathroom, Roger said, and the task takes Carol 45 minutes every morning.

While Allison prepares Carol's breakfast, she sits in her wheelchair in the living room and watches TV. Allison takes a break and Roger swaps in until lunchtime. Allison returns and prepares another round of medication for Carol while Roger feeds her lunch. Allison leaves mid-afternoon, and Roger stays with Carol for about an hour before Jessica, a second caretaker, comes in.

Carol takes another dose of medications at 3 p.m. while Jessica massages her limbs. Carol takes at least 20 medications a day, Roger said, and recently started a morphine regimen. Usually she takes four to six ibuprofen each day to try to avoid morphine. She doesn't like the way painkillers make her feel. Jessica and Roger then take Carol to the bathroom, which takes them up to dinner time.

Carol relaxes in a recliner while Collin, Roger or Jessica feed her dinner and more medication. After dinner, the care team bathes Carol and changes her clothes. A last trip to the bathroom closes out the day as Carol settles in bed around 9 p.m. But before she can sleep, Carol is hooked up to a breathing apparatus.

The daytime caretaker leaves and an overnight person comes in. Carol wakes up two to three times every night, often because she needs a saline solution in her nose because the medications dry her out.

Every time Carol wakes up, Roger does, too.

A family disease

Carol is sick, but the disease affects the entire Schmidt family. Carol knows this.

"People don't know what I go through on a daily basis," Carol said. "I feel like I am a burden to everyone and there is nothing I can do about it."

Though she once was opposed to life in a nursing home, she has conceded to preserve her family's health.

"I don't want to die, but I feel like I am," Roger said. He's lost 15 pounds and fallen into depression since Carol was diagnosed. He has neuropathy, varicose veins and shoulder injuries. He's had a hernia and been through surgery. He's attended grief meetings for family caregivers but grew tired of pitches from wheelchair and other equipment salespeople. No matter how much rest he gets, concerns about bills and budgets constantly weigh on him.

Collin's job has him patrolling the beaches for Manatee County Public Safety. He spends his off time helping his parents with housekeeping, Carol's care and whatever else they need. Collin is grateful that his two children are grown and understand why he can't be at home as much as he used to be.

"It's taxing to say the least," Collin said. "The disease is ruthless."

His parents, he says, "don't know the feelings I have toward the disease and I try to keep it off of their plate. I wouldn't wish this disease on my worst enemy."

Carol misses the days before the disease.

When she wasn't touring the world and helping others plan their vacations, she kept the family's house in order. In her spare time, she created art that still decorates the Schmidt residence. She and Roger took boat trips where the family's Yorkie, Corky, sat at the bow. The couple used to build furniture together, a venture they had hoped to pursue in retirement.

Although Carol's body has failed her, her mind is as sharp as ever. She's still aware of what goes on around her and she can still laugh. Allison often makes her laugh.

"I used to be funny, too," Carol said.

Roger and Carol need a solution. They're open to just about anything. Mostly, Roger wants to talk with other families who are in the same situation. He wants to see how other caretakers and loving family members carry the financial and emotional load placed on their shoulders by ALS.

"We just can't go on like this," Roger said.

Janelle O'Dea, business reporter, can be reached at 941-745-7095 or follow her on Twitter@jayohday.

This story was originally published January 10, 2016 at 12:00 AM with the headline "A fatal struggle: Devastating disease ALS robs Bradenton couple of their dreams ."