When Jeff Saenz's wife, Terri, learned she had amyotrophic lateral sclerosis (ALS) in 2015, he knew a time would come when he would need help.
“As the disease progressed and limited her ability to do self-care routines and feed herself, I knew I wouldn't be an effective caregiver while also working full-time without another set of hands,” says Saenz, 58, a software developer and engineer.
A friend recommended he seek help from a local home care agency, which found an aide, Micole. She has visited their house in Canton, MI, for more than a year, providing care for about four hours a day, three days a week. Micole helps Terri, 57, wash her face and use eye drops and nasal spray, sets up the cough-assist machine to exercise Terri's lungs, and prepares her cold brew coffee. She also does laundry and meal prep.
Like many families, Saenz wants his wife to stay home and is holding off on moving her to a nursing home for as long as possible. According to a 2021 AARP survey, more than 75 percent of adults over 50 would prefer to live in their own home as they age.
“In my practice, a lot of caregivers are doing everything they can to keep their loved ones at home through a combination of unpaid support from family and friends and paid help with home health care workers,” says Douglas Scharre, MD, FAAN, professor of clinical neurology and psychiatry at Ohio State University Wexner Medical Center in Columbus. “But for some, the demands of caregiving can be overwhelming, and getting support and resources early can make a significant difference.”
Determining when home care is the best option for a loved one involves having a health care professional assess physical, cognitive, and behavioral factors, says Glen Finney, MD, FAAN, director of the memory and cognition program at Geisinger Medical Center in Danville, PA. “For families, it's usually their decline in daily activities, particularly self-care routines and cooking, that triggers a discussion around home care,” he says, adding that safety issues “are the biggest driver as to whether someone can remain home with help.”
Signs to look for include mobility and medication management issues, poor nutrition, neglect of personal hygiene, and frequent falls, which may suggest safety concerns, says Lance A. Slatton, a certified senior care manager with Enriched Life Home Care Services and host of the “All Home Care Matters” podcast. “Cognitive signs like increased forgetfulness, personality changes, and social isolation, along with an unkempt home or difficulty managing finances, further indicate the need for assistance,” says Slatton, who lives in Livonia, MI. “Caregiver stress, feelings of inadequacy, or a sense of failure that the care exceeds their capabilities may also signal it's time to consider home care.”
Caregivers often feel guilty about taking time for themselves because they think they always should be there for their loved one, Dr. Scharre says, but they can't be their best if they feel exhausted and mentally drained. “Caregivers have to give themselves permission to recharge,” he adds. “It's not selfish; it's essential for their well-being and for the care they provide, and home care can help provide that much-needed break.”
Establishing Home Care
Once they determine that home care is the right choice for them, caregivers must figure out the type of care their loved one needs. “Someone in the early stages of dementia may only need a companion a few days a week, but as the disease progresses and cognitive and physical challenges increase, more regular care and monitoring may be necessary,” Dr. Finney says.
Personal care and companionship. Many families start with this type of assistance. Non-medical support providers can run errands; do light housekeeping, laundry, and meal prep; fulfill personal care needs; and provide companionship. Costs typically range from $14 to $38 an hour, Slatton says.
Home health care workers. This includes home health aides. These providers can handle medical and non-medical care, including nursing; physical, occupational health, and speech therapies; and social work. The frequency of their visits depends on the patient's needs.
Visiting nurses. Skilled nurses may provide wound care, intravenous therapy, medication administration, and pain management. They may be available 24 hours a day, seven days a week, but visits may vary.
Overnight care. This can include preparing patients for bed, reminding them to take their medication, and monitoring them overnight. Two main types of providers exist: overnight nurses, who typically cost $60 to $90 an hour or $720 to $1,080 for a 12-hour shift, and overnight aides, who can provide non-medical support; their fees range from $30 to $40 per hour or $360 to $480 for 12 hours, Dr. Slatton says.
24/7 in-home care. This continuous care includes assistance with daily living, medication management, meal prep, and safety monitoring in addition to companionship. Costs usually range from $720 to $960 per day for non-medical care and from $1,440 to $2,160 for specialized nursing care.
Choosing the Right Worker
To find the right option for them, caregivers should start by assessing the patient's needs to see if they need companionship, personal care, or more skilled nursing services; have the patient's neurologist make a qualified assessment; and ask to meet with a social worker who can help with the details.
Families also can use online resources like the Administration for Community Living's Eldercare Locator or Medicare Home Health Compare to find local home health care agencies. Local aging agencies also may be able to point caregivers in the right direction.
Caregivers should check the home health care agency's credentials to ensure they are licensed, certified, and accredited. Since regulations vary by state, families should contact their state's health department about accreditation, certification, and quality standards for these agencies. They also may want to ask the agency itself what background checks, if any, it does on its workers.
“Families should evaluate the services offered, inquire about staff training and qualifications, and make sure the agency can meet specific needs, such as language or cultural preferences,” Slatton says. “Practical factors, such as the worker's availability to do nights and weekends and the agency's years of service in the community, are other important considerations.”
Saenz recommends that caregivers ask agencies for client references and read patient reviews online. “It may take time, and you may not find the right worker immediately, but finding the right match is crucial,” he says.
Paying for Home Care
The frequency and duration of home health care workers’ visits will depend on the patient's needs as well as the cost of that care. While Medicare provides health care coverage for people with ALS even if they are younger than 65, it does not cover home care. Saenz's employer-provided health insurance plan does not cover it, either, so he and his wife paid about $12,000 out of pocket over the 15 months since he hired a home care worker in February 2024.
The Saenzes applied for a stipend with ALS of Michigan (a nonprofit that supports patients, their families, and their caregivers) and now receive $500 a month. Friends also helped raise thousands to cover some of the home care expenses, Saenz says.
Hadley Ferguson, 48, of Missoula, MT, was diagnosed with multiple system atrophy in 2013, more than two years after doctors initially told her she had Parkinson's disease. As her health complications escalated, requiring her to use a feeding tube, and her fatigue worsened, she sought added support and became more dependent on her husband, John, a partner at a law firm. In response, a health care team at Oregon Health & Science University in Portland conducted an assessment, confirming that she needed increased support at home to manage her health issues.
Ferguson eventually got Medicare disability insurance, which provides health insurance to people younger than 65 who qualify for Social Security disability because of a medical condition the agency considers to be disabling. Its offerings include general medical services, speech and occupational therapies, and personal care aides to help with daily tasks like showering.
But Ferguson notes that these benefits come with a catch: all of her treatments must be provided at home. That becomes an issue with her physical therapy because she needs a visceral physical therapist who works on the organs. “In my area, no one can provide that therapy in my home, so my only option is to pay out of pocket and see a physical therapist in the office,” she says.
Medicaid, a state-run government program designed to provide health coverage for individuals and families with low incomes and limited resources, can cover home care costs. Income thresholds to qualify for Medicaid vary among states, but limits can be as low as $20,000 per year for an individual.
When these programs or insurance don't cover home care costs, families can explore local resources, including community-based services and financial assistance programs, such as those from local and state health departments or hospital charities. Patients also should consider seeking financial support from disease-specific groups like the Saenzes did from ALS of Michigan.
“It's important for families to remember that eligibility requirements and available services vary depending on where they live and which program they're considering,” Slatton adds. “Over the years, I have found that local resources provide the most current and helpful information, ensuring families have access to the support they need during difficult times.”
Home Health Care Resources
