Getting Good Care

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ALS is not a disease you want to take on by yourself. And if you don’t want to take it on yourself it is too much to rest its responsibility on your family. Therefore, caregiving is a necessity and this section is to help you find not just good but the best in caregiving options.

Insurance policies and state Medicaid programs vary in the type of care they’ll cover, so be sure to understand the policy’s provisions. Some in-home assistance for low-income people over age 60 with disabilities may be covered under the Older Americans Act, with funds administered by the state. A few states allow hiring and paying a family member as a caregiver. Check with your Area Agency on Aging or state department of social services.

HIRING CARE GIVERS

Home health care agencies provide trained and licensed staff to assist with daily care in the home. The number of hours these aides work depends on the family’s budget, insurance coverage and preferences.

Home health agencies usually are Medicarecertified, meaning they meet federal minimum requirements for patient care and management and therefore can provide Medicare- and Medicaid-covered home health services. These agencies provide skilled services from nurses and closely control what their employees may and may not do, meaning that in some instances they only may be allowed to provide medicalrelated services for the patient.

Staffing and private-duty agencies generally provide nursing services. Most states don’t require these agencies to be licensed or meet regulatory requirements.

Homemaker and home care aide agencies offer less skilled care, such as meal preparation, bathing, dressing and housekeeping. Personnel are assigned according to the needs and wishes of each client. Some states require these agencies to be licensed and meet minimum standards established by the state.

Registries or visiting nurse associations serve as employment agencies for home care nurses and aides, matching these providers with clients and collecting finder’s fees. These organizations usually aren’t licensed or government regulated.

PROS & CONS OF CAREGIVER HELP

Nurses and home care aides are trained and experienced in the various chores required to care for a person who’s seriously ill. The agency takes full responsibility for finding a person the family likes and makes sure everything works smoothly.

But in-home care is expensive. Users pay a fee that covers the employee’s wages plus agency expenses and profit. At the national average of $18 an hour, this can add up to $144 for an eight-hour day, or nearly $13,000 a month for round-the-clock care. The degree of insurance coverage may be a deciding factor in whether to use agency help and for how many hours.

The hired caregiver is working for the family, not the agency (and should act in this manner. Caregivers need to learn about the family’s preferences, and respectful of physical and emotional boundaries. The aide should be willing to communicate with the individual diagnosed with ALS no matter how difficult, and aware of family members’ personal space and emotions. If the aide is at all uncomfortable with performing any of the duties required, especially duties related to the personal care of your loved one, don’t be afraid to request another aide. Your responsibility is to make sure the aide’s behavior gives your loved one a sense that his or her needs will be taken care of competently. This helps reduce the stress of having an outside caregiver in the home.

Look at the first few weeks as a trial period; if someone doesn’t show up on time, isn’t a good fit or behaves offensively, call the agency and ask for another aide. A professional agency will comply without objection.

See “Hospice,” for more about getting care help at home.

Tips for Using Agency Help

Be completely honest about needs. Agencies are familiar with almost every type of assistance required; embarrassment or concern that you’re asking too much shouldn’t interfere.
State preferences from the start. Be specific about hours, daily routines, and household rules such as “no smoking” and off-limits areas of the home. Don’t assume the agency will know your exact wishes.
Make it clear who in the family is the authority or decision maker — the person with ALS or the primary caregiver or both. If everyone in the family gives orders to the employee, the result can be confusion and failure to give proper care. Discuss disagreements among family members outside the employee’s presence.
Give feedback to the employee or agency on a timely basis. If there’s a problem, no matter how small, address it immediately to be sure the employee is clear on your wishes. If that doesn’t work, call the agency — it’s responsible for supervision.

HIRING AIDES DIRECTLY

Some families prefer to bypass the agencies and hire a person on their own to assist with caregiving. Someone with little or no medical training can be hired for a lower rate, and can be trained in basic caregiving tasks such as lifting, bathing, maintaining equipment — essentially everything the primary caregiver has been doing.

This type of aide can be a live-in assistant or someone who comes in a couple of afternoons a week to relieve the primary caregiver.

PROS & CONS OF HIRING DIRECTLY:

Pro: Caregivers can pay a lower rate to someone who doesn’t come through an agency, especially a part-time high school or college student.
Pro: There’s no need to deal with agency guidelines, regulations and applications.
Con: The person won’t have been evaluated by an agency, making the primary caregiver responsible for checking out applicants’ backgrounds and ensuring the person is honest and qualified.
Con: Some recordkeeping is involved, primarily hours and payment history. You also may be responsible for paying federal and state employment taxes if payment to the aide is over a certain dollar threshold.
Con: Health insurance may not cover the cost of an independently hired aide (although it may not cover agency help either.
Con: If there’s only one helper, there’s no agency to send a backup person when the helper is unavailable.
Con: If the helper is a family member or friend, there can be awkward consequences if things don’t work out or problems arise.

FINDING AN AIDE

There are many ways to find potential assistants. Word-of-mouth is the best resource. Other ways to locate applicants are:

Check with senior centers or independent living centers.
Place classified ads in local or college newspapers. College students, high schoolers or Scouts may be able to fill a community service requirement by caregiving.
Put announcements on bulletin boards or newsletters at hospitals or social service organizations.
Ask at community college or university career centers or departments of nursing, physical therapy or social work. Students may be looking for part-time jobs or unpaid internships that offer experience.
Ask the social worker or other health care professionals at your MDA clinic for other resources in your area.
Your children’s teachers or school administrators may know of parents looking for work.
Run a free ad in craigslist, www.craigslist.org.
Call the community volunteer center.
Go to Extra Hands for ALS, www.extrahands.org. This Web site matches student volunteers with families with ALS in several cities.
Ask at privately owned drugstores and medical clinics.

DECIDING WHAT HELP YOU NEED

Before you look for an aide, know exactly what you need assistance with. Make a list of tasks and create a job description.

Keep in mind any rules such as no smoking, no cooking, no loud music, etc. Are you primarily interested in physical care, companionship, housekeeping or a combination of all three? Does the help need to have available transportation, need to be on call? What other preferences does the person have?

INTERVIEWING & HIRING

If you are going to hire your own caregiving assistant then you must screen applicants for criminal records, training, job referrals, etc. It is unacceptable to take a chance for someone that is dangerous, incompetent or dishonest to be in your home with a vulnerable person.

When someone calls in response to the ad or inquiry, ask what they’d like to know. For example, it’s a bad sign if their first question is “How much does the job pay?” or “How much time off do I get?” It’s better if they ask what some of the duties are or how many hours they’d be needed.

Explain the job briefly, but don’t describe your loved one’s exact physical condition or the number of people in the household. There are criminals who search out vulnerable victims from ads and notices.

The phone call should let you weed out inappropriate applicants. If you get a good feeling from the phone call, ask the person to come for an interview.

Conduct an interview and give specifics in regards to what you are looking for. The internet is full of Interview sources as a reference if needed.

Ask some open-ended questions: Tell me about yourself. Why are you interested in this job? What’s your school/work schedule? What do you do in your spare time? The answers will give some insight into communication skills and personality, important factors in a future relationship.

Of course, ask about experience — even volunteer or family caregiving experience could be valuable. If they’ve done in-home care before, ask why the job ended.

Explain your needs in some detail and find out if they have experience bathing, feeding, etc. Describe a typical day and what’s expected of them, and check the reaction. Be sure to tell them of any uncomfortable tasks you expect of them, and ask if they have the physical strength for lifting and transferring.

If you’re seeking a live-in, be specific about guidelines: Can anyone move in with them? Can they bring a pet? What’s included — rent, utilities, food, phone, cable, furniture? Are days off set or negotiable? Can they have friends over for dinner or overnight? Ask if the applicant is in a relationship, and make clear whether it’s OK for the partner to spend time at your home. If so, how often?

For all applicants, ask for names and contact information of several people you can call for references. Former employers are best; students also may list teachers or people from church or the neighborhood for character references.

If at any point in the interview, you know the person is unacceptable, just conclude the meeting. There’s no need to waste time talking with someone you aren’t going to hire.

When you’ve narrowed the field to one or two leading candidates, it’s time to check background. This is imperative, especially if the person hasn’t been referred by someone you know. You can’t be too careful about exposing your home and your loved one to someone you don’t really know. Make sure they give you a permanent address, date of birth, Social Security number and driver’s license number.

Run a criminal background check and driving records check.

OTHER CARE

HOSPICE

Hospice services can provide a transition from care at home to full-time care away from home. Hospice care is available to people in the end stages of a terminal disease.

Hospice staff and volunteers provide day-to-day care and comfort, in the home or other locations. Services include administering medications, including those to ease suffering; performing personal hygiene tasks and minor medical procedures; and offering compassionate companionship and support. Most hospice services provide support to the family as well. The hospice service may provide a lot of equipment for the patient at home, including bed, bedside table, alternating pressure mattress, roll-in shower, commode, medications and other supplies.

ASSISTED LIVING FACILITIES

Assisted living bridges the gap between independent living and nursing homes. Residents in assisted living centers aren’t able to live by themselves but don’t require constant care either.

Assisted living facilities offer help with activities of daily living such as eating, bathing, dressing, laundry, housekeeping and taking medications. The facility should create a service plan for each resident, detailing personalized services required by the resident and guaranteed by the facility, and update it regularly. People who live in newer-model assisted living facilities usually have private apartments, and there are common areas for socializing, as well as a central kitchen and dining room for preparing and eating meals.

NURSING HOMES

A nursing home is a place of residence for people who require constant nursing care and have significant deficiencies with activities of daily living. Physical, occupational and other rehabilitative therapies are offered.