Accepting the need
When one member of the family
becomes disabled, roles within the family change and it hurts. A person who
is used to taking care of the family or being the income-provider may become
dependent while another person in the family takes on added, often unfamiliar
responsibilities. For a single person, the changes may involve unexpected
dependence on non-family members. Just the word “dependence” can trigger
unpleasant feelings. People who can talk openly about their fears, anxiety,
frustration, and doubts will be more able to deal successfully with these new
An exacerbation left Holly with loss of
vision in one eye, bladder dysfunction, and weakness in both legs. Holly and
her husband, Bob, were confronted with the issue of home care. Initially,
Holly was adamantly opposed to hiring anyone to help her at home. She feared
that she would lose her privacy. She felt confident that she could continue
to perform basic tasks. Her only need for assistance, she claimed, was to
have someone drive her to stores to do shopping.
Her husband wondered how she could keep
the house clean, get to her doctor’s appointments, and coordinate the
schedule for the visiting nurse and physical therapist. He was also
apprehensive about how Holly would manage the nights he was away on business
The prospect of hiring an in-home
attendant also posed the question of whether Holly and Bob could afford it.
Both of them felt overwhelmed at the prospect of identifying the help needed,
interviewing people, and paying the fees.
The first thing Holly and Bob learned was
the importance of communication. Holly’s fears about her independence and
privacy, for example, had to be heard and understood by her husband before
they could proceed. And Holly had to listen to his concerns about her safety
and other issues she was not even considering. He did not want to crush her
hope of recovery, but he could not ignore her weak legs and poor vision. They
both had to plan for the present.
Do you need a nurse,
an aide, a housekeeper, or a friend?
Before considering who to hire, your present needs have to be identified.
Needs usually fall into five general categories: Medical (bowel and bladder management, range-of-motion exercises, occupational
therapy); Personal care (bathing, dressing, shaving,
toileting, transferring, hair care, meal preparation, wheelchair and scooter
maintenance, transportation); Homemaking (shopping, errands,
house cleaning, laundry, household paperwork and bill paying); Companionship (conversation, safety issues, entertainment); Psychological (counseling to address depression and assist in developing new goals).
You and your family members should
identify the needs together and discuss how they can be met. For example, a
nurse may be needed to irrigate a catheter or administer certain medications.
An aide can do range-of-motion exercises and assist in morning bathing. The
person with MS may be able to prepare meals but not clean up afterwards. A
housekeeper can do the laundry but not give a shampoo.
Can a family member, friend, or volunteer
be relied on for some needs? Are there times when the person with MS prefers
to be alone? Could a “life call” system alleviate some worries about safety?
It usually takes time to clarify who is needed and how often. Use the “Needs
Assessment Worksheet” to work out answers for your situation.
Using an agency
There are some advantages to using
professional agencies. Agencies select trained aides, physical therapists,
and nurses. They handle record-keeping, background checks, scheduling and
coordinating care, and they bill insurance carriers directly, all of which
can lift a burden off an overwhelmed family. Agency administrators are
usually familiar with community services and know insurance requirements and
It may be helpful to use an agency during
a crisis or in a period of adjustment.
When looking for an agency, ask:
- Does it work with your insurance company, with
Medicare, with Medicaid?
- What services does it provide?
- What needs cannot be met?
- Will the services be provided by the same
person each day?
- Does the agency supply references for the
professionals it sends?
- Are these professionals bonded?
- What are the fees? Is there a sliding scale?
Do they charge for travel time? Is there a minimum number of hours per
- How do the fees compare with those of other
- Is there a backup system for emergencies,
holidays, or sick days?
- How long has it been in business?
- Is it licensed and accredited by appropriate
Usually agency administrators process
claims with Medicare and/or private insurance and the insured is responsible
for some co-payment. Agency rates vary, and so do reimbursement formulas. Be
sure to make complete comparisons before making your choice. Agencies usually
require a prescription for service from your physician.
Hiring on your own
Employing home help personally
involves more work, but it also has some advantages. The family has more
control over duties, salary, and scheduling. The agreement is developed
without a third party. In many cases, it will be less expensive and thus more
appropriate for housekeeping needs.
Before going on your own, be sure this is
an option for you. Medicare requires that certain services
be provided by a licensed, certified home-health care agency. Medicare
provides 80 percent reimbursement for skilled nursing care and aides,
physical therapy, speech therapy, occupational therapy, and medical social
services. You cannot hire someone on your own for these
services and receive any Medicare reimbursement.
In addition, Medicare does not provide
reimbursement for homemaker services, home-delivered meals, or for 24-hour
nursing care in the home. All of this may be subject to change. Private
insurance will have other restrictions or exclusions. Be sure to check.
Create a job
From your needs list, you and your family
should create a job description. Use the “Job Description” worksheet.
The fee you will pay your help is
determined by both your available resources and the community’s “going rate”.
Rates vary from community to community. Use resources such as community
social services, your Society chapter, and people you respect who have
employed help to establish what the going rate is.
Be prepared to keep records. A written
record of your employee’s work schedule and payments is required for tax
purposes and is important to diminish possible conflicts about hours or
payments due. If you pay an in-home helper more than $1,000 a year, you may
have obligations to pay state and federal withholding taxes and Social
Security. Contact the IRS for information and forms.
Conducting a search
Let anyone you trust know what
you’re looking for. The written job description will help make this clear. In
addition to your chapter of the National MS Society, contact hospitals,
senior centers, community centers, clergy and church organizations, and
college employment offices. Try hospital-based schools for nurses, medical
technicians, or therapists, as many of these students would like a
health-based job. Call the Independent Living Center in your area. And you
may want to try organizations such as the Knights of Columbus, Elks,
Volunteers of America, and ethnic clubs such as the Hibernian Society.
A newspaper advertisement widens your
search. A small local paper is best. Write the ad using your job description
and have someone review it before it is submitted. Include job title, duties,
salary range, and a telephone number. For your own protection, omit
your name and address. You might put the same information on a
flyer, which can be posted in colleges, churches, temples, and community
Be prepared to screen responses.
Have paper, pencil and a list of questions by the telephone. Before speaking
to anyone, clarify for yourself:
- What are your minimum requirements?
- What personal qualities are you looking for?
- What are you looking for in references?
- How much and what kind of experience do you
- Can you be flexible about some of the
qualifications you desire?
- Does the person have transportation?
- What language does the person speak?
- How do you contact the applicant? (Be sure to
ask for a telephone number.)
If the person sounds suitable on the
telephone, try to schedule an interview immediately.
Have a family member or trusted
friend with you. If possible, conduct interviews away from your home to
protect your privacy. This is a safety issue, but it also helps to have
another person’s “gut reaction” to your applicant.
Have the written Job Description with you
so the applicant is absolutely sure of the requirements. Don’t be tempted to
omit mentioning chores that might embarrass you, such as changing a catheter
bag or helping you bathe. Open discussion is essential to employing someone
who will be capable of meeting your needs.
Ask your applicant to fill out the
applicants form. This document helps you make your decision and can be useful
if you need to replace someone.
Write an agreement!
Once you and your family have checked
references, decided whom you are going to hire, set the fee, and
determined responsibilities, it is important to write an agreement you both
Words of caution
It is daunting to invite a stranger into your
home and the intimate parts of your life. You and your family can make the
situation less anxiety provoking by doing your homework well. Whether you use
an agency or hire on your own, consider these cautions:
- Keep track of how much cash you have and where
you have put it.
- Keep checkbooks, credit cards, and valuables
under lock and key.
- If you need help writing checks, give them out
one at a time.
- If an employee shops for you, always get and
read the receipts.
- Never give an employee your credit cards. Rely
on family members or trusted financial advisors.
- Don’t discuss your finances with anyone except
family and financial advisors.
- Keep track of your supply of medications by
writing down how much you order and when.
- Don’t borrow from or lend money to an
- Arrange for periodic, unannounced visits by
friends or relatives while your employee is on duty.
- Arrange a few code words with a close family
member. In case of a bad situation, you can telephone for help by saying
something like, “It’s Nancy’s birthday tomorrow.”
Basics: Who does what services at home?
- The Personal Care Attendant (PCA) does bathing, dressing, grooming,
toileting, feeding, preparing meals, and does housework, laundry,
household management, and driving—on a daily and long-term basis. In some
states, Medicaid may pay for PCAs via independent living programs.
Most people hire and pay for a PCA on their own.
- The Home Health Aide (HHA) or Certified
Nurse Assistant (CNA) provides limited personal care, assistance with activities of daily
living, light housework, a client's laundry, and shopping. HHAs may be
covered by Medicaid, Medicare, or private insurance, but rarely for
routine care over a long period (which is referred to as maintenance
care). The HHA is usually employed by a home-health agency and works
under that agency’s supervision.
- A Homemaker or Housekeeper does housework, cooking, errands, laundry,
shopping, and similar chores. Homemakers do not usually provide any
“hands-on” or personal services, but they can be hired through a home-health
agency as well as a domestic-service agency or privately. Their
services are not covered by any medical insurance, either public or
- Professional services include nursing, physical therapy,
occupational therapy, social-work service, nutrition (meal planning,
not meal preparation), and others. A doctor’s prescription is usually
necessary. Medicaid, Medicare, and private insurance usually cover
some or all of professional services but frequently with restrictions
regarding the number of visits and/or the needs to be covered.