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Where
to find:
These agencies are listed in the yellow pages under
Home
Health Care. Other resources for agencies in your community are:
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Senior Services
Centers,
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The Alzheimer's
Association
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Hospice
organizations
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City/County
Organizations that service the Handicapped
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Word of
mouth from support group members who can also provide valuable first hand
experience with the quality of service various agencies in your
community offer.
How
to pay for services:
Home Health Care Agencies
are primarily private pay but they usually accept Medicaid and
Medicare reimbursement if you qualify for those services as well as private
insurance and other approved sources of financial assistance.
For the most
part, home-health care is an out of pocket expense because home care for an Alzheimer's
person is considered custodial and not chronic. If your person also has
another illness such as MS, or Parkinson's, or stroke, they may be covered
under that condition with Medicare and other private sources. Always
check out your options with the agency.
Services
offered:
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Obviously there are a wide range of hours and situations and care levels
that home-health care agencies can assist you with from housekeeping and cooking to chronic care.
They will provide you with a list of the levels of care, job titles and
duties of the personnel they employ and the costs per hour.
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The
agency will usually require a home visit in order to evaluate your needs and
your family member's needs. They will then make a recommendation as to
the level of care they can provide. Obviously, you do not need a licensed
nurse to change a diaper or bathe your person and home health care agencies.
Incontinence should not be a barrier to working with your person.
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You might also find that they can be helpful to you in navigating the
increasing needs as they develop, including incontinence care and
bathing. Their people
should be trained in the specific needs of Alzheimer's Disease, but be aware that
not everyone understands the nuances of Alzheimer's care. Be prepared
to be specific in terms of how to approach your person and ready to do a
certain amount of training. Always ask what their personal experience
with Alzheimer's as been.
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Their home-care employees must meet training/experience requirements, must
meet licensing criteria, have references checked and periodically attend
training programs designed to update skills. The home health agency
will pay compensation and taxes which relieves the caregiver of those
tasks.
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They usually require at least 3 hours of work for their people per home
visit, although some require more and some less.
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Depending on how extended their services are they can provide up to 24
hours a day in care and weekends if required.
Concerns
you should have:
If they don’t have
personnel trained specifically in Alzheimer’s,
you will want to know how receptive their staff will be to working with the problems
your person manifests and how receptive they will be to using the methods you
have worked out. If your system of care works and your person is comfortable
with that system then that system should be the one that is used. Alzheimer’s
people don’t adapt to change very easily.
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The side from which your person is approached
in dressing, seating, getting in and out of bed, matters.
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The order in which they are dressed and undressed matters.
What is their accustomed routine. Which arm goes in which sleeve
first. These may seem inconsequential matters but those things make a
difference in the comfort zone of the person with this disease. Continuity and routine matter.
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How they are related to and the language used with them matters.
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Understanding the physical barriers that mirrors and noise create for your
person matters.
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Having
the same aid on an extended basis is essential as opposed to a parade of 10
different 'professional helpers' parading through your life and your family
member's life.
Continuity in care also means continuity in the
caregiver's Lives. People
with AD take time to become comfortable with any new person in their
lives. With the constant change of personnel your person is vulnerable
to the varieties of style and manner of professional helpers who don't always
understand the vagarities of this disease or your family member, and that
often leads to problems for you and your person.
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Your
person gets accustomed to the voice, the manner, the way in which they are
handled. If they are being toileted
and have become used to the person working
with them, changing that person places your family member back into a place of
fear and uncertainty and embarrassment. More often than not, what seems like a simple change to the
attendant can send your person into a catastrophic reaction in your absence.
They will respond to their fears and their distrust in the only way they
can.
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Don’t
allow the home health agency to minimize the need for continuity and don’t
allow them to maximize the importance of a catastrophic reaction, if one
occurs, as a means of placing blame on you or your family member. The fault is
never with your person, because your person is incapable of doing anything with
malice or design. They are merely responding to what is being presented to them.
A properly trained professional caregiver knows that and the referring agency
should know that.
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If your person shows no problem with small changes in their
routine and how others handle them, feel lucky and let it be. While having a constant progression of aides trotting through
the bathroom with your family member isn’t good, sometimes a change in
personnel can’t be avoided. Unfortunately that is one of the drawbacks of an agency that
doesn’t have the manpower to commit staff to certain jobs.
Your
role as the Primary Caregiver and Case Manager:
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Know that if you
have a new aide on hand it is best to stay near to observe how they work and
step in to show them when they deviate from your routine and explain why they
shouldn't deviate Your presence will be comforting and supportive to the family member.
When
you are satisfied that your family member is comfortable with the new person,
then you can leave and feel some security in knowing your family member is being
taken care of and you can then relax and enjoy the time away.
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You have a right to feel comfortable with the person the
agency sends into your home.
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You have a right to ask for someone else if their
attitude or experience conflicts with your person’s needs or with you.
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You
have an obligation to make the needs of your person the priority.
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Keep notes. No matter how fragmented your
personal case history is, it
is better than nothing. Your case notes are a useful place to note what is or
isn’t working with the referral agency as well as what is working. Note
changes in personnel and the affect those changes have on you and your
family member. For directions on how to compile a case history/journal of
your person and the services you access click here! Putting
Together a Case History.
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If you feel any agency you work with is becoming resistant to
you or your family member, go in an review their case notes and ask for a
conference to discuss the problems. You have a right to review their case
notes and there are always case notes.
Where Else to Find Qualified Help:
The advantage to hiring through a home health agency is that
references and experience have already been checked and the taxes and social
security etc., are carried as part of the fee they charge you. However,
don’t assume they have a monopoly on experienced workers. There are many home-health
workers who prefer to work independently and there are ways to tap into the
resources that can make them accessible to you. It is also important to note
that you will probably have to do some supervision and training no matter who
you hire.
Other sources of employees:
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Public employment agency
Church or Faith Community
Local newspaper - Help Wanted
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Support group member referrals
Neighbors, relatives, friends
Senior Services referrals
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When hiring people privately be prepared to check references, set a
realistic salary, job hours, time off and exact job duties. Keep in mind
that part of the private agency fee that caregivers pay covers compensation
and other deductions from income. Consider that in relationship to the
salary you offer.
The person hired may prefer to work as an independent
contractor, in which case they handle their taxes themselves, or, as in the
case of the woman we hired, we paid workmen’s compensation, and deducted
taxes for her. However, we hired her to work full time. Other people who came
in on a part time basis to relieve our full time person preferred to work as
independent contractors. These things can all be worked out. Ask the potential
worker how they prefer to be paid, they’re the ones with experience, most
often they can tell you exactly what the process is.
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Write a realistic job description.
The local public employment agency or possibly aging services in your community, can help with that.
Check the
newspaper and see how other ads are written. Call some of the ads to see
what their response has been. (Yet another way to meet a
caregiver).
Determine the hours and days.
Unless the primary caregiver is working full
time or needs full-time or live-in help, it is best to start out small and
work up to more hours and more duties gradually. It is usually very
difficult for caregivers to know what is needed at the beginning of
this process. That is something you tend to grow into. As
you become more
adept at utilizing time away from your person you will be able to better
analyze what the real needs are.
©2000
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