How to Find and Hire Caregiving Help at Home

Peggy Merriman, RN, BSN
Director of Care Services, ALS United Greater Chicago

As ALS progresses, patients experience increasing muscle weakness, making daily self-care more difficult. This gradual loss of ability leads to a greater reliance on caregivers for tasks like bathing, eating, and dressing. Initially, caregiving responsibilities often fall to family members, who may face challenges balancing care with work, child-rearing, or their own health needs. Supporting family caregivers is crucial, and hiring paid help can provide relief. It allows family members to reclaim their roles as partners, parents, or friends, even for a few hours.

The first step is to identify your current needs and understand that these needs will change over time.

• What are the specific times that you need help?
• Daytime or overnight hours?
• Do you need help every day, or a few days a week?
• What type of tasks do you need the most help with?
• How much lifting will be involved?
• Is there a need for the caregiver to be able to drive?

It is not often practical for agencies to provide a caregiver just for one hour, even if this is all that is initially needed. Be prepared for agencies to ask for a minimum of four hours per day in most cases.

There are two ways to go about finding and hiring caregiver, and understanding the difference between the two is important.

Non-Medical Home Care Agency

Agencies provide trained aides who assist with direct care. They offer training for staff and accountability through supervisors. While every effort is made to assign consistent staff to a patient, there may be personnel changes by the agency based on scheduling or need. If your assigned caregiver is unavailable for a shift, the agency will likely be able to send someone to cover.

Staff or aides provided are employees of the agency and may be legally limited to non-medical tasks. In Illinois, aides are unable to assist in ‘medical’ tasks such as medication or tube feeding administration. If there is a family caregiver available to administer medications and tube feedings, an agency caregiver can then take responsibility for the remainder of the care needs.

Agencies can provide Registered Nurses (RNs) or Licensed Practical Nurses (LPNs) for skilled medical tasks if necessary, but the hourly cost for a nurse is considerably higher than that of an aide. The hourly rate that the family pays for this kind of caregiver includes agency operating costs and overhead.

Hiring an Independent Caregiver

Independent caregivers can be found through friends, family, sites like Care.com, or through state-licensed placement agencies. When you hire an independent caregiver, you contract directly with the caregiver to negotiate services and payment. Because they are not working under the license of an agency, this type of caregiver has more flexibility in the tasks they can perform. Like family caregivers, they can be taught to assist with things like respiratory equipment or administering
tube feedings.

When hiring a private caregiver, it is up to the patient or family to perform background checks, ask about professional liability insurance, and manage payroll. The hourly rate for an independent caregiver is generally lower than that paid to an agency, though a placement agency may charge a finder’s fee.

When hiring an independent caregiver, it is up to you to discuss the plan for coverage if they are unavailable. Many have colleagues that can help with coverage, but be sure to discuss this up front.
When you have determined which route of hiring a caregiver is best for your individual situation, you are ready to start making calls. There are hundreds of agencies – how do you know where to begin?

Some of the best caregiver referrals are word-of-mouth. Ask family and friends if they have used caregivers to care for family members. If so, do they have a personal reference for an individual? If they used an agency, ask which agency and what their experience was like. People in your circle who have used similar resources are a wealth of information.

If you attend an ALS support group, ask the other attendees about their experiences. Your Care Services Coordinator or multidisciplinary clinic social worker can also provide a list of local agencies in your area.

Any time you bring someone into your home to work, safety is important. The vast majority of caregivers perform their important work from their heart with good intent. All the same, take care to secure valuables in the home to limit temptation. Family caregivers should remain actively involved in the supervision of the caregiver and adjusting the plan of care as needs change. Patients who live alone and use paid caregivers should have a friend or family member available to oversee care and act as an advocate in the event that the patient has difficulty with communication or is unable to direct their care.

While the ideal is to find a caregiver with experience with ALS, this is not always possible. For a caregiver unfamiliar with ALS, an understanding that the patient’s needs will change and increase over time is key. Look for someone who can be flexible with a patient’s evolving needs, and who is comfortable working with a degenerative disorder. Your Care Services Coordinator can help direct you to appropriate educational materials for caregivers who want or need to learn more about ALS.

Be sure to also give some consideration to personality. This individual will be coming into your home regularly, and you need to be comfortable with them. Do you want someone who is chatty and social, or quiet and reserved? The best caregivers have an ability to become an important part of your family while also respecting boundaries. Be patient with the process and know that there may be some trial-and-error before you find the right fit.

Costs will vary regionally, and there may be some variation between agencies. CareScout has a cost estimator that can give you hourly, daily, and monthly cost estimates by location: carescout.com/cost-of-care.

If you have additional questions or would like more information about navigating this process, please be sure to reach out to your Care Services Coordinator.