Hiring Private Duty Home Care Workers:
Why Work through an Agency?
By Rona S. Bartelstone, LCSW, BCD, CMC
One of the greatest long-term needs of older adults and those with chronic illnesses is for in-home, custodial care services. These workers are often referred to as home health aides, certified nursing assistants and custodial care workers. These in-home workers make it possible for people with functional limitations to remain at home in a comfortable, familiar environment. Home health aides (as we will refer to this class of workers) provide a wide range of assistance with activities of daily living (ADLs), such as bathing, dressing, grooming, assisting with ambulation or transferring, toileting, feeding and providing medication reminders. In addition, home health aides help with what professionals call, instrumental activities of daily living (IADLs), such as shopping, meal preparation, making medical appointments, transportation, laundry and companionship.
While it is true that most people would prefer to remain in their own homes, there are circumstances in which care in a residential or nursing facility is more appropriate and more cost-effective. For example, the individual who needs round the clock care because of treatments or behavioral issues will find a nursing facility or residential setting likely to be more affordable. The biggest proportion of people who utilize home health aide services are those who need several hours per day of assistance, as opposed to those who need full-time care.
Due to the cost and the increasing shortage of home health aides, many families seeking to hire in-home staff turn to private individuals rather than working through an agency. While at first glance this seems reasonable, it can also cause numerous problems and create unexpected liabilities for the family, who becomes the employer.
Tax Issues
As a private employer, the individual or family is required to pay Social Security, unemployment and payroll taxes. Many home health aides will represent themselves as independent contractors, ostensibly relieving the hiring individual of these tax obligations. However, it is the responsibility of the hiring individual to be sure that the aide truly is an independent contractor and is therefore paying their own taxes. In many instances, the aide will not meet the legal criteria as an independent contractor. If the aide has not met his or her tax obligations, this responsibility falls to the employer. This can be a serious obligation because it may involve interest on back taxes, civil fines and the possibility of criminal penalties. Potential private employers should seek the advice of a labor lawyer to assure appropriate hiring practices with respect to federal tax laws.
Case Example: Mr. L hired a home health aide for his mother on the basis of a recommendation from a neighbor who also employed this individual. Mrs. L needed help because of a minor stroke that left her unsteady on her feet. Initially, Mrs. L only needed four hours of help per day to assure that she had a bath, that two meals were prepared and that the weekly shopping was completed. Occasionally, the aide also accompanied Mrs. L to some of her many medical appointments.
As time went on, Mrs. L continued to have minor strokes that left her increasingly debilitated. After 18 months, Mrs. L was quite incapacitated and had lost her ability to speak. At that point, the family decided to ask the aide to live in full-time and provide total care to Mrs. L. This relationship was very loving and lasted until Mrs. L passed away.
Because the aide had given up all of her other clients to care for Mrs. L full-time, she had no other immediate employment when Mrs. L died. Since she needed income to support her family, the aide filed for unemployment benefits. It was at that point, that the IRS became aware of the employer and filed a lawsuit for back unemployment taxes, penalties and a fine. The family of Mrs. L did not understand their responsibility as an employer and found themselves in a legal action that took over two years and many thousands of dollars to resolve.
Workers' Compensation and Liability Issues
As the employer, the individual or family paying for the private home health aide would be held liable for any work-related injury that occurs on the job. This can include the cost of all medical expenses and any disability payments that might become applicable.
Since the home-care industry is noted for work-related injuries, this can be a huge risk, especially if the caregiving tasks include lifting, transferring or bathing. There are also risks related to communicable diseases if the aide does not abide by universal precautions that are required by all licensed agency personnel.
Furthermore, the employer retains any liability that arises out of an injury to the person being cared for or any other person on the premises. If the home health aide were to cause an accident, for example, in which other family members suffered any harm or losses, the employer would bear the full responsibility for all costs and compensation.
Case Example: Home health aide, Myra Jones had a history of back injuries after many years of work in rehabilitation facilities. Her injuries always responded well to treatment, and were kept at bay with back supports provided by her employer. When Mrs. Jones had the opportunity to follow one of her clients home from rehab as a private aide, she took advantage of the offer and worked privately for Mr. S.
Mr. S didn't need a lot of physical care when he first left the rehab facility. He was there because he had had surgery that left him weak and a little confused. Unfortunately, the confusion did not clear up as the anesthesia left his body. It seemed that he had begun to develop a dementing illness, and would need increasing supervision for safety.
Over time, Mr. S began to need increasing amounts of physical care, especially for transferring and dressing. Mrs. Jones found herself increasingly taxed by the care of Mr. S, but she had become so attached to him that she did not express her concerns to the family that had hired her.
One day, as Mrs. Jones was dressing Mr. S, she bent down to help him with his shoes and her back froze in place. She was unable to straighten up. She managed to creep to the phone to call a friend for help, but she had to insist that Mr. S not move out of her sight for fear that he would wander off.
Mrs. Jones had found herself being treated in the rehabilitation facility in which she used to work. The doctor told her that she would not be able to work as an aide again. As she got stronger, Mrs. Jones filed for worker's compensation and disability insurance.
Once again, the government became aware of the employment situation in which the injury occurred and they pursued the family for medical expenses and for disability coverage. This cost the family many times more than it would have if they had the appropriate insurances or if they had worked through a licensed home health agency.
Abuse and Exploitation
Unfortunately, there is the potential for both physical abuse and financial exploitation when work is being done on behalf of a frail, functionally limited, and often cognitively impaired individual. While most individuals who become home health aides do so out of a desire to help others and to contribute to the community, there will always be those who see this type of work as an opportunity to take advantage of someone. This becomes especially easy when the aide and the recipient of care are isolated in a private home setting with little or no supervision.
Families don't fail to provide supervision out of malicious neglect. Supervision is often difficult because of geographic distance, lack of expertise, or the close emotional bonds that often get established between the aide and the person receiving the care. Furthermore, families often do not have the time or the resources to do criminal background checks, or to contact references, if they even think to ask for references. Sometimes families are so grateful for the care provided by an aide that they are also vulnerable to manipulation and exploitation.
Agency Supervision
A licensed home care agency has a responsibility to provide ongoing supervision for their employees. This includes helping the aides to understand the changing needs of clients, assuring the proper limits of care according to the practice acts of the various levels of professionals, and mediating difficult relationship issues.
Providing supervision is often as important for the aide as it is for the family. Home health aides often work with very challenging situations in the isolation of the private home situation. There are often issues of different cultural and faith traditions, different expectations about personal schedules, eating preferences and expectations. An agency supervisor can help to clarify the roles of the home health aide, and the expectations of both worker and care recipient. Furthermore, the agency can support the aide in setting appropriate limits on the types of care that can be provided. For example, an older adult might expect an aide to help with dressing changes or high tech care that is legally the responsibility of a licensed nurse.
In situations in which there are personality issues because of cognitive changes or a history of challenging relationships, the agency supervisor is available to provide guidance and support to both staff and care recipient. This can be very fragile, especially if there is a lack of trust or behaviors that are strange to the home health aide. The support of a supervisor can help the aide understand that this is part of the disease process and cope with behaviors so that the aide and the client can have a successful relationship. Often, supportive supervision is the key to making a challenging situation work.
Case Example: Mr. B lost his wife who had cared for him for over 60 years. He needed help with shopping, meal preparation, transportation and an appropriate selection of clothing. His family had hired many aides on his behalf. It seemed that Mr. B would fire every aide after only a few days, always stating that they didn't know how to do anything right. When Mr. B came to us, the home health supervising nurse spent time talking with him about his needs and expectations.
She learned that Mr. B was unhappy because none of the aides did things the way his wife had done them and this made him feel uncomfortable in his own home. The nurse supervisor explained that everyone had different ways of keeping house. Mr. B was amazed because he thought that all women learned the same routines. Having realized this, the nurse spent more time with Mr. B to find out what was happening that was different from what his wife had done. Amazingly, small things like letting dishes air dry on the counter, versus drying them and putting them away, were distressing to him. By going through the daily routine and learning about Mr. B's expectations, the supervisor was able to provide clarification to the aide and the first one placed in the home was able to be successful and have a multi-year relationship with Mr. B.
The employer, whether it is a private individual or an agency, has a great deal of responsibility in hiring and managing a home health aide. This includes responsibilities that are financial, legal and involve governmental regulations. When a family is ready to hire home health aide services, they need to make a basic decision about the source of such assistance. This decision needs to take into consideration the type of help needed, the financial and tax implications, the need for supervision and the relative vulnerability of the person receiving the care.
If the family is unwilling or unable to assume the full range of responsibilities, they would be better off working through an agency. If the family chooses to hire privately, they need to consult a lawyer and an accountant to assure that they make proper arrangements for all of their obligations. In addition, they need to stay involved in the relationship to assure proper care and a mutually supportive relationship.
Thursday
Wednesday
Dad's Odd Behaviors...
Dad’s Odd Behaviors Don’t Mean He Has Alzheimer’s–He’s Just Getting Older, Right?
By Jacqueline Marcell, Author, “Elder Rage” (http://www.ElderRage.com)
For eleven years I pleaded with my elderly father to allow a caregiver to
help him with my ailing mother, but after 55 years of loving each other–he
adamantly insisted on taking care of her himself. Every caregiver I hired to
help him sighed in exasperation, “Jacqueline, I just can’t work with your
father–his temper is impossible to handle. I don’t think you’ll be able to
get him to accept help until he’s on his knees himself.”
My father had always been 90% great, but boy-oh-boy that temper was a doozy.
He’d never turned it on me before, but then again–I’d never gone against
his wishes either. When my mother nearly died from an infection caused by
his inability to continue to care for her, I immediately flew from Southern
California to San Francisco to save her life–having no idea that in the
process it would nearly cost me my own.
EARLY SIGNS OF DEMENTIA?
I spent three months nursing my 82-pound mother back to relative health,
while my father said he loved me one minute but then get furious over some
trivial little thing and call me horrible names and throw me out of the
house the next. I was stunned to see him get so upset, even running the
washing machine could cause a tizzy, and there was no way to reason with
him. It was so heart wrenching to have my once-adoring father turn against
me.
I immediately had the doctor evaluate my father, only to be flabbergasted
that he could act completely normal when he needed to! I could not believe
it when the doctor looked at me as if I was crazy. She didn’t even take me
seriously when I reported that my father had left the gas stove on without
it lighting, or that he had nearly electrocuted my mother. Luckily, I walked
into the bathroom just three seconds before he plugged in a huge power
strip, which was in a tub of water–along with my mother’s soaking feet!
Much later, I was furious to find out that my father had instructed his
doctor (and everyone he came into contact with) not to listen to anything I
said because I was “just a (bleep bleep) liar”–and all I wanted was his
money! (Boy, I wish he had some.)
Then things got serious. My father had never laid a hand on me my whole
life, but one day he nearly choked me to death for adding HBO to his
television–even though he had eagerly consented to it just a few days
before. Terrified and shaking, I dialed 911 for the first time in my life.
The police came and took him to a psychiatric hospital for evaluation, but I
just could not believe it when they released him saying they couldn’t find
anything wrong with him. What is even more astonishing is that similar
horrifying incidents occurred three more times.
CAREGIVER CATCH 22
I was trapped. I couldn’t fly home and leave my mother alone with my
father–because she’d surely die from his inability to care for her. I
couldn’t get healthcare professionals to believe me–because my father was
always so darling and sane in front of them. I couldn’t get medication to
calm him, and even when I finally did–he refused to take it, threw it in my
face, or flushed it down the toilet. I couldn’t get him to accept a
caregiver in their home, and even when I did–no one would put up with him
for very long. I couldn’t place my mother in a nursing home–he’d just take
her out. I couldn’t put him in a home–he didn’t qualify. They both refused
any mention of Assisted Living–and legally I couldn’t force them. I became
a prisoner in my parents’ home for nearly a year trying to solve crisis
after crisis, crying rivers daily, and infuriated with an unsympathetic
medical system that wasn’t helping me appropriately.
GERIATRIC DEMENTIA SPECIALIST MAKES RIGHT DIAGNOSIS
You don’t need a doctorate degree to know something is wrong, but you do
need the right doctor who can diagnose and treat properly. Finally, I
stumbled upon a compassionate neurologist specialized in dementia, who
performed a battery of blood, neurological and memory tests, along with CT
and P.E.T. scans. He reviewed all of my parents’ many medications and also
ruled out all the many reversible dementias. And then, you should have seen
my face drop when he diagnosed Stage One Alzheimer’s in both of my
parents–something that all of their other doctors had missed entirely.
TRAPPED IN OLD HABITS
What I’d been coping with was the beginning of Alzheimer’s, which starts
intermittently and appears to come and go. I didn’t understand that my
father was addicted and trapped in his own bad behavior of a lifetime and
that his habit of yelling and pounding the table to get his way was now
coming out over things that were illogical and irrational… at times. I
also didn’t understand that demented does not mean dumb (a concept that is
not widely appreciated) and that he was still socially adjusted never to
show his “Hyde” side to anyone outside the family. Even with the onset of
dementia, it was amazing he could be so manipulative and crafty. On the
other hand, my mother was as sweet and lovely as she’d always been.
BALANCING BRAIN CHEMISTRY
I learned that Alzheimer’s is just one type of dementia (making up 65% of
all dementias) and there’s no stopping the progression nor is there yet a
cure. However, if identified early there are medications that in most people
can mask/slow the progression of the disease, keeping a person in the early
independent stage longer–delaying full-time supervision and nursing home
care. (Ask a Dementia Specialist about the FDA approved medications:
Aricept, Exelon, Razadyne and Namenda.)
After the neurologist treated the dementia and then the depression
(often-present in dementia patients) in both of my parents, he prescribed a
small dose of anti-aggression medication for my father, which helped smooth
out his volatile temper without making him sleep all day. (Boy I wish we’d
had that fifty years ago!) It wasn’t easy to get the dosages right and not
perfect, but at least we didn’t have to have police intervention anymore!
And once my parents’ brain chemistries were better balanced, I was able to
optimize nutrition, fluid intake, and all their medications with much less
resistance.
CREATIVE BEHAVIORAL TECHNIQUES
As soon as the medications started working, I was able to implement some
creative behavioral techniques to cope with all the bizarre behaviors.
Instead of logic and reason–I learned to use distraction, redirection and
reminiscence. Instead of arguing the facts–I simply agreed, validated their
frustrated feelings, and lived in their reality of the moment. I finally
learned to just “go with the flow”. And, if none of that worked, a bribe of
vanilla ice cream worked the best to get my obstinate father into the
shower, even as he swore a blue streak at me that he’d just taken one
yesterday (over a week ago)!
Then finally, I was able to get my father to accept a caregiver in their
home (he’d only alienated 40 that year-most only there for about ten
minutes), and with the tremendous help of Adult Day Health Care five days a
week for them, and a weekly support group for me, everything started to fall
into place. It was so wonderful to hear my father say once again, “We love
you so much, sweetheart.”
ALZHEIMER’S / DEMENTIA OFTEN OVERLOOKED
What is so shocking is that no one ever discussed the possibility of
Alzheimer’s with me that first year. I was told their “senior moments” and
intermittently odd behaviors were just old age, senility, stress, and a
“normal part of aging”. Since one out of every eight persons by the age of
65, and nearly half by the age of 85, get Alzheimer’s Disease–I should have
been alerted to the possibility. Had I simply been shown the “Ten Warning
Signs of Alzheimer’s”, I would have realized a year sooner what was
happening and known how to get my parents the help they so desperately
needed.
If any of this rings true for you or someone you love, I urge you to seek
early evaluation from a Dementia Specialist-immediately!
Jacqueline Marcell is a former television executive whose caregiving
experience resulted in her first (bestselling) book “Elder Rage”, a
Book-of-the-Month Club selection being considered for a film. Over fifty
endorsements include: Hugh Downs, Regis Philbin, John Hopkins Memory Clinic,
and the National Adult Day Services Association who bestowed on her their
Media Award. She also hosts the “Coping With Caregiving” radio program
www.wsRadio.com/CopingWithCaregiving. Jacqueline is also an International
speaker who has delivered over 150 keynotes, including to the Florida House
of Representatives. She also writes a Q&A column for AgingCare.com, and
Blogs for HealthCentral.com and ThirdAge.com. Jacqueline is also a breast
cancer survivor who advocates that everyone (especially caregivers), closely
monitor their own health. www.ElderRage.com
By Jacqueline Marcell, Author, “Elder Rage” (http://www.ElderRage.com)
For eleven years I pleaded with my elderly father to allow a caregiver to
help him with my ailing mother, but after 55 years of loving each other–he
adamantly insisted on taking care of her himself. Every caregiver I hired to
help him sighed in exasperation, “Jacqueline, I just can’t work with your
father–his temper is impossible to handle. I don’t think you’ll be able to
get him to accept help until he’s on his knees himself.”
My father had always been 90% great, but boy-oh-boy that temper was a doozy.
He’d never turned it on me before, but then again–I’d never gone against
his wishes either. When my mother nearly died from an infection caused by
his inability to continue to care for her, I immediately flew from Southern
California to San Francisco to save her life–having no idea that in the
process it would nearly cost me my own.
EARLY SIGNS OF DEMENTIA?
I spent three months nursing my 82-pound mother back to relative health,
while my father said he loved me one minute but then get furious over some
trivial little thing and call me horrible names and throw me out of the
house the next. I was stunned to see him get so upset, even running the
washing machine could cause a tizzy, and there was no way to reason with
him. It was so heart wrenching to have my once-adoring father turn against
me.
I immediately had the doctor evaluate my father, only to be flabbergasted
that he could act completely normal when he needed to! I could not believe
it when the doctor looked at me as if I was crazy. She didn’t even take me
seriously when I reported that my father had left the gas stove on without
it lighting, or that he had nearly electrocuted my mother. Luckily, I walked
into the bathroom just three seconds before he plugged in a huge power
strip, which was in a tub of water–along with my mother’s soaking feet!
Much later, I was furious to find out that my father had instructed his
doctor (and everyone he came into contact with) not to listen to anything I
said because I was “just a (bleep bleep) liar”–and all I wanted was his
money! (Boy, I wish he had some.)
Then things got serious. My father had never laid a hand on me my whole
life, but one day he nearly choked me to death for adding HBO to his
television–even though he had eagerly consented to it just a few days
before. Terrified and shaking, I dialed 911 for the first time in my life.
The police came and took him to a psychiatric hospital for evaluation, but I
just could not believe it when they released him saying they couldn’t find
anything wrong with him. What is even more astonishing is that similar
horrifying incidents occurred three more times.
CAREGIVER CATCH 22
I was trapped. I couldn’t fly home and leave my mother alone with my
father–because she’d surely die from his inability to care for her. I
couldn’t get healthcare professionals to believe me–because my father was
always so darling and sane in front of them. I couldn’t get medication to
calm him, and even when I finally did–he refused to take it, threw it in my
face, or flushed it down the toilet. I couldn’t get him to accept a
caregiver in their home, and even when I did–no one would put up with him
for very long. I couldn’t place my mother in a nursing home–he’d just take
her out. I couldn’t put him in a home–he didn’t qualify. They both refused
any mention of Assisted Living–and legally I couldn’t force them. I became
a prisoner in my parents’ home for nearly a year trying to solve crisis
after crisis, crying rivers daily, and infuriated with an unsympathetic
medical system that wasn’t helping me appropriately.
GERIATRIC DEMENTIA SPECIALIST MAKES RIGHT DIAGNOSIS
You don’t need a doctorate degree to know something is wrong, but you do
need the right doctor who can diagnose and treat properly. Finally, I
stumbled upon a compassionate neurologist specialized in dementia, who
performed a battery of blood, neurological and memory tests, along with CT
and P.E.T. scans. He reviewed all of my parents’ many medications and also
ruled out all the many reversible dementias. And then, you should have seen
my face drop when he diagnosed Stage One Alzheimer’s in both of my
parents–something that all of their other doctors had missed entirely.
TRAPPED IN OLD HABITS
What I’d been coping with was the beginning of Alzheimer’s, which starts
intermittently and appears to come and go. I didn’t understand that my
father was addicted and trapped in his own bad behavior of a lifetime and
that his habit of yelling and pounding the table to get his way was now
coming out over things that were illogical and irrational… at times. I
also didn’t understand that demented does not mean dumb (a concept that is
not widely appreciated) and that he was still socially adjusted never to
show his “Hyde” side to anyone outside the family. Even with the onset of
dementia, it was amazing he could be so manipulative and crafty. On the
other hand, my mother was as sweet and lovely as she’d always been.
BALANCING BRAIN CHEMISTRY
I learned that Alzheimer’s is just one type of dementia (making up 65% of
all dementias) and there’s no stopping the progression nor is there yet a
cure. However, if identified early there are medications that in most people
can mask/slow the progression of the disease, keeping a person in the early
independent stage longer–delaying full-time supervision and nursing home
care. (Ask a Dementia Specialist about the FDA approved medications:
Aricept, Exelon, Razadyne and Namenda.)
After the neurologist treated the dementia and then the depression
(often-present in dementia patients) in both of my parents, he prescribed a
small dose of anti-aggression medication for my father, which helped smooth
out his volatile temper without making him sleep all day. (Boy I wish we’d
had that fifty years ago!) It wasn’t easy to get the dosages right and not
perfect, but at least we didn’t have to have police intervention anymore!
And once my parents’ brain chemistries were better balanced, I was able to
optimize nutrition, fluid intake, and all their medications with much less
resistance.
CREATIVE BEHAVIORAL TECHNIQUES
As soon as the medications started working, I was able to implement some
creative behavioral techniques to cope with all the bizarre behaviors.
Instead of logic and reason–I learned to use distraction, redirection and
reminiscence. Instead of arguing the facts–I simply agreed, validated their
frustrated feelings, and lived in their reality of the moment. I finally
learned to just “go with the flow”. And, if none of that worked, a bribe of
vanilla ice cream worked the best to get my obstinate father into the
shower, even as he swore a blue streak at me that he’d just taken one
yesterday (over a week ago)!
Then finally, I was able to get my father to accept a caregiver in their
home (he’d only alienated 40 that year-most only there for about ten
minutes), and with the tremendous help of Adult Day Health Care five days a
week for them, and a weekly support group for me, everything started to fall
into place. It was so wonderful to hear my father say once again, “We love
you so much, sweetheart.”
ALZHEIMER’S / DEMENTIA OFTEN OVERLOOKED
What is so shocking is that no one ever discussed the possibility of
Alzheimer’s with me that first year. I was told their “senior moments” and
intermittently odd behaviors were just old age, senility, stress, and a
“normal part of aging”. Since one out of every eight persons by the age of
65, and nearly half by the age of 85, get Alzheimer’s Disease–I should have
been alerted to the possibility. Had I simply been shown the “Ten Warning
Signs of Alzheimer’s”, I would have realized a year sooner what was
happening and known how to get my parents the help they so desperately
needed.
If any of this rings true for you or someone you love, I urge you to seek
early evaluation from a Dementia Specialist-immediately!
Jacqueline Marcell is a former television executive whose caregiving
experience resulted in her first (bestselling) book “Elder Rage”, a
Book-of-the-Month Club selection being considered for a film. Over fifty
endorsements include: Hugh Downs, Regis Philbin, John Hopkins Memory Clinic,
and the National Adult Day Services Association who bestowed on her their
Media Award. She also hosts the “Coping With Caregiving” radio program
www.wsRadio.com/CopingWithCaregiving. Jacqueline is also an International
speaker who has delivered over 150 keynotes, including to the Florida House
of Representatives. She also writes a Q&A column for AgingCare.com, and
Blogs for HealthCentral.com and ThirdAge.com. Jacqueline is also a breast
cancer survivor who advocates that everyone (especially caregivers), closely
monitor their own health. www.ElderRage.com
Quote of the Day
“There are only four kinds of people in the world - those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”
— Rosalynn Carter, 1997
— Rosalynn Carter, 1997
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