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How To Deal with the Stress of Caregiving with
Donna Benton and Shawn Herz
By Donna Benton
WebMD Live Events
Transcript Archive
Event Date: 06/01/2000.
The opinions expressed by Dr. Benton and Ms. Herz are theirs and theirs alone. If you have any
medical questions about your health, you should consult your personal physician. This event is
meant for informational purposes only.
Moderator: Welcome to WebMD Live's Senior Vitality Auditorium. Today we are discussing How
to Deal With the Stress of Caregiving, with Donna Benton, PhD, and Shawn Herz, MSG, MFT.
Donna Benton is a geropsychologist. She received her degree from California School of
Professional Psychology in Los Angeles. She is currently an assistant research professor of
gerontology at the University of Southern California-Andrus Gerontology Center and the
coordinator of the Education and Information Transfer Core of the Alzheimer's Disease Research
Center at USC. She has several years of experience as a clinical gerontologist and her areas of
interest include elder abuse, caregiver stress, and health aging. She is a consultant with the
Caregiver Resource Center and works with their counseling programs for caregivers.
Shawn Herz holds a Masters of Science in Gerontology from the University of Southern California
and is a licensed Marriage, Family and Child Therapist. Since March 1995, Ms. Herz has been
the Family Services Director for the Los Angeles Caregiver Resource Center, which is a
department in the Ethel Percy Andrus Gerontology Center at the University of Southern
California. A regular guest lecturer for USC's School of Social Work and the School of
Gerontology, Ms. Herz is often called upon by the news media for her expertise and over twenty
years of experience as a gerontologist.
Dr. Benton, Ms. Herz, welcome to WebMD Live. What can the caregiver do to prevent burnout?
Herz: First of all you need to recognize what burnout is. That's the first part in recognizing that
you have a problem, understanding symptoms of burnout. You want to pay attention to yourself
and there are certain habits that come about when you are starting to feel burned out.
Moderator: What are the 'red flags' that alert family or friends that the caregiver is having
trouble?
Herz: You want to look at the signs that are pretty common to all of us, one being your increased
or decreased eating habits. Lots of times caregivers become more susceptible to colds and flu.
Changes in sleep patterns. Most often they're not getting enough sleep. There's also increased
conflict with family and friends and others they come in contact with. At times you see an increase
in alcohol usage and caregivers complain about an increase in headaches.
Dr. Benton: Stomach aches, vague feeling aches and pains.
Herz: The other thing is that caregivers also become more socially isolated, start declining
invitations, do not invite friends or family over. They become more resentful.
Dr. Benton: Also we need to look at some of the psychological symptoms. Caregivers have a
much greater chance of becoming depressed, hopelessness, helplessness, lack of interest and
pleasure in their usual activities. They may have more difficulty with concentration and decisionmaking. There's generally increased reports of feelings of anxiety. There are quite a few 'red
flags' and they cut across medical symptoms, physical symptoms, there are psychological
symptoms and social symptoms. That's the important thing to remember about stress, it doesn't
just affect one aspect of our lives. It aspects the three major aspects of our lives that make us a
whole person.
Moderator: How sneaky is stress?
Herz: There are some stages of stress and we're not usually aware of them, but when you're first
hit with stress, the body reacts to three stages. The first stage is we react with alarm. The second
stage is we are resistant and we do everything we can to try to fix the situation. We might do
research. We run to doctors. We consult family and friends. At that point, everybody's interested.
When we're caregivers, it's an ongoing situation and ultimately stress leads to exhaustion. It
sneaks up because we believe we can take care of everything, and stress is associated with a lot
of the mores of society. There are a lot of should's dictated to us. You should take care of your
family.
Dr. Benton: I out being a caregiver to your relatives.
Herz: It's what you do, what is expected of us in our society, and when someone even begins to
make a small expression of tiredness or needing help, most of us say, 'oh, I am so proud of what
you're doing.' They don't hear the complaint. They just say you're doing a great job. You need to
continue. They shut off the caregiver. The caregiver is supposed to be this hero or heroine.
Dr. Benton: Most are women who are juggling multiple responsibilities.
Herz: Another reason for the guilt is that the caregiver compares themselves with the loved one's
predicament and they say 'my situation is nothing compared to my husband with Alzheimer's.'
The comparisons accentuate their need to sacrifice. Another piece is the sadness and guilt
because the caregiver grieves for their unfulfilled dreams. For example, many caregivers take an
early retirement, look forward to their golden years, only to find a catastrophic disease hit one of
them maybe one year into retirement. Their plans for travel, good living are often derailed.
chachie_WebMD: So is depression a normal part of caregiving?
Dr. Benton: It is a sign of burnout and stress. Caregiving should not create depression if it's
being coped with and people are getting the type of relief they need. It is not a normal part of
caregiving. It's a sign of something wrong with the caregiving experience. Sometimes normal
means good but also common. While many caregivers become depressed, many do not. We
need to recognize when we are depressed and that that's a real cry for help.
Moderator: Where can someone go for this depression?
Herz: First it's important to accept assistance with coping with caregiving. That is the common
problem with caregivers, they do not welcome assistance, productive assistance in coping with
their caregiving. Nobody can care for their loved ones as well as they can. They are unable to
delegate certain caregiving needs to others. It's important to recognize what your needs are and
use some creative problem solving in answering those needs. Example: For some people, it's the
burden of managing the finances. Often women who've been dependent on their husbands for
over 50 years to do this are at a complete loss and become overwhelmed and taken advantage
of. They are okay with providing personal care and cooking and cleaning. In that situation, it's a
welcoming answer if you find somebody or a service that will manage your finances.
Moderator: How can the caregivers financially protect themselves?
Herz: Most individuals wait until a crisis starts before they examine their finances and make
future plans. It's critical that one get appropriate directions from an elder lawyer who is
experienced with estate and long-term planning to help look at what the future may look like, and
it's important while you're well to discuss each other's advance directives. What are your wishes if
something should happen? What is the wish of each individual? How would they like to be cared
for? You want to ask this while the person is well.
Dr. Benton: I think one of the first places to get help for depression is your physician. Your
physician is not a psychologist but to express this, they can have the referral for you to get
appropriate counseling. Another way of addressing depression is to try to maybe look for a
support group, which are located generally within hospitals, local social service agencies.
Herz: There are disease-related institutions like the Parkinson's Disease Foundation, The
National Stroke Foundation, The Diabetic Foundation, the National Alzheimer's Association. They
will refer you to a support group and other resources for your situation in your area.
Dr. Benton: I think it is important to recognize that you should try to find what their disease is. It's
very specific and if you have a good idea of what you're dealing with, that's where you can call.
Sometimes the associations are local and sometimes national, and they're in the phonebook or
on the web. For the depression, it's also important to know you can call local mental health
agencies that deal with issues of depression, sadness, loneliness, there are counseling services.
You can look for something that says they have counseling services.
Herz: Another thing is when an individual is feeling depressed, oftentimes that becomes the
greatest burden with friends and neighbors. They avoid you because they know you're going to
talk about your woes. I want to underline the support groups. That is a very powerful setup for
caregivers because they get it. Also, not only do they get it, but more minds together are better
than one, and you think creatively regarding problem solving your situation. The other thing is not
everybody wants to go conventional path. Many times individuals give up the things that bring
them joy. I've had many clients give up their art or music or their gardening or their book clubs,
they give up everything. They're giving up themselves to be this perfect caregiver. For many
individuals, just having that peace, that activity that brings you joy back into your routine can be
uplifting. To hire a person for two hours while you're gardening, being able to go and listen to
music. It's important to problem solve and not to let yourself go. Do not sacrifice yourself and
those things that bring you joy. You'll have nothing left. I had a woman who was caregiving for her
husband who required total care with Parkinson's. They both loved music. They had limited
finances and what they did is they called the local high school music department and they hired a
young woman, about 16, to come and play their flute in their home. It was very inexpensive and
she would come in about once a week and it worked out for everyone. She and her husband
would just sit and listen, and this young girl's mother was grateful because she knew she was
practicing once a week. It's important to be creative.
Moderator: How do I help my family and friends understand what I am going through?
Dr. Benton: I think one step in helping your family understand is to be able to express it to them.
Being able to say to them, if you can at least sit down not under a stress circumstance, if they can
actually take time to describe the illness, the information, if they come armed with some
information, that's helpful. Maybe the information comes from the association, so it's not as
threatening. Another thing is families, if you were a caregiver, caregivers often do not set
boundaries and one of my favorite quotes is: "If you never say no, what is your yes worth?" I often
tell caregivers that quote. It's powerful because it's important to set limits. People, particularly
adult children, assume a lot when it comes to their mother caring for their father and they still
expect Thanksgiving dinner. I knew a woman whose granddaughter-in-law was tired of watching
the grandmother being taken advantage and for Mother's Day she made a bunch of coupons and
handed them out to all family members and friends of the grandmother. Example: A grandson
had six coupons that he had to give his grandmother and included mowing the lawn and doing
repair work. Another niece was to make casseroles once a week. Another person was to do the
marketing on Thursdays. That was her gift for Mother's Day and that established a routine.
People do want to be helpful. We all want to be helpful but most of the time, we don't know how
to be.
chachie_WebMD: What are the most important skills for caregivers to have?
Herz: Say no. Set boundaries.
Dr. Benton: A caregiver needs to be able to express their needs and be very specific. Many
caregivers, when they're stressed, will say "I need some help," and someone will say, "let me
know if you need help," and no one knows what they're asking for. You have to learn to be more
assertive in how you express yourself. Another skill is patience, to give yourself time and the
person you're caring for. It's important to learn to pace yourself. 'Rome wasn't built in a day.'
Caregiving is not a sprint, it is a marathon. Pacing is very important. Caregivers need to look at
their strength in coping with past stresses so they can bring that to the current situation.
Sometimes caregivers fail to recognize that they have been under stress before and they handled
it. They think they're in a completely new situation. It's also important that caregivers learn how to
be observant. Learn what works and doesn't, and be willing to experiment very fast. Don't worry
about failure.
Herz: I want to include some other important coping strategies. One that I find important is
maintain a sense of humor. Be able to laugh at yourself. Be gentle with yourself. I often tell
caregivers, treat yourself like your own best friend. Most caregivers neglect their own health care
which can add to depression. They are overly concerned with their loved one's healthcare. Take
time to take care of yourself. If you don't take care of yourself, no one will. I often tell caregivers, if
you don't take care of yourself, the captain will go down with the ship.
chachie_WebMD: Where can I go when I need to take a break, no one is around to help me?
Herz: There are many options for caregivers. One option that I strongly suggest is to look into the
adult day centers where a person is able to take their loved one who is frail to a facility that
provides activities, meals, sometimes help with personal care, sometimes help with some
exercise. They're in a safe, stimulating, social environment so that the loved one can take a
break, and these centers often run Monday through Friday and operate sometimes up to eight
hours daily. Another option is to hire someone to come in to provide care for your loved ones so
you're able to get out.
Dr. Benton: If you're involved in a church, you can talk to people there, because a surprising
number of them have visitors, they may be running an adult daycare program. They have some
type of relief program for their members. You can speak with your physician, and perhaps a
physician can offer home health services which can come in and give you some hours of relief.
It's limited but it might be enough to get you a little start, meet people who do this type of
professional caregiving, and it is covered under Medicare.
chachie_WebMD: How about if I can't afford daycare or hiring someone, what are my other
options?
Dr. Benton: That's why I said churches often are helpful. Many times national associations and
support programs are free. You can do exchange programs with other caregivers.
Herz: There are certain organizations and agencies that provide financial aid. Every state is
different but there are often associations that will provide a stipend or a scholarship. And
oftentimes, the adult day centers operate on a sliding scale.
Moderator: Have you failed as a caregiver because you had to place your loved one?
Herz: That is a common question associated with the guilt of society's should's. Oftentimes, it's
important to recognize one's own physical, psychological and financial limits. Usually it's the
physical that goes first. When a person is putting themselves at risk, it's important to look at other
options. Oftentimes, you have a spouse, a 100-pound woman who is 80 years old caring for her
180-pound, 82-year-old husband and this woman is placing herself at great risk of physical harm.
Another situation is at times, when a person is suffering with a dementia, they can become
violent, aggressive and out of control. I have experienced caregivers who are concerned about
the immediate threat on their life. A husband may attack a wife with a knife, gun, because they
are no longer able to identify this person as a loved one. Those are extreme examples.
Unfortunately they are common. One needs to explore all options before this decision to place
their loved one be made.
Dr. Benton: People tend to think institutionalization equates with nursing home. There's a
continuum of options for placement before we do the 24-hour care. One thing that people need to
consider are assisted living facilities, depending on the needs of the person, where you can get
some meals in a congregate living situation. They may have more help with home chores. They
may have people that are more familiar with taking care of daily routines, and that's not a nursing
home. You have what we already mentioned, which are adult day cares that allow extended safe
periods of time for the person to be away. There are also adult day health cares which have a
rehabilitative quality to them. There are specialized programs that are called PACE (Program of
All-Inclusive Care for the Elderly) programs which are healthcare programs where they have
taken the Medicare and MediCal and Medicaid funding, so that healthcare coverage is used to
provide all inclusive care for the elderly, which often includes respite component. They pay for
this out of already existing Medicare, Medicaid dollars.
Herz: There are hundreds if not thousands of individuals who now have small board and care in
their homes. They are licensed up to six individuals in their home. I have many clients who utilize
these small board and cares when they go away. Sometimes they use them for long-term
placement but it's like living in the home of a relative.
Dr. Benton: PACE programs are listed on the Administration on Aging (AOA) web site,
www.aoa.gov.
chachie_WebMD: How do I know I qualify for Medicaid?
Herz: Very important, many individuals want Medicaid and will do anything to have it. My strong
suggestion is to when you contact the AOA, get in contact with a case manager. They have
different kinds of case managers in every city. A case manager can talk to that individual and
explain Medicaid and eligibility.
chara_nicole_WebMD: What is available for the family members of these people we care for?
Herz: I know in the state of California, there's something called the Caregiver Resource Centers,
and they look at caring for the caregiver and family, because their philosophy is by caring for the
family and caregiver, that assists the patient. Their whole focus is on the caregiver and the family.
They have a web site as well. We're going to get that. There are other states that are following
that model as well. When people are looking for outreach, some of my suggestions include
tapping into your local hospitals, senior centers, to your church and synagogue. Most of these
places have programs that are helpful for caregivers and families.
chachie_WebMD: What reading materials are available to help me deal with caregiving?
Herz: One of my favorite books is The 36-Hour Day: A Family Guide to Caring for Persons with
Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy
Mace. Many people use that as their bible. Taking Care of Aging Family Members by Wendy
Lustbader and Nancy Hooyman.. The Caregivers Guide by Carolyn Rob, RN.
chachie_WebMD: What can I do with my mother's behavioral problems?
Herz: First and foremost, it's important to establish a medical baseline. You want to rule out the
reasons for behavior and I strongly urge everyone to get a geriatric assessment.
Dr. Benton: After you eliminate any kind of medical reasons that may make a change in a
behavior problems -- We forget changes in dosages in medications and prescriptions medications
can be related to behavioral problems. A new environment can be related to behavior problems -assuming you have done a good medical check, you're having problems, a common one when
someone with Alzheimer's Disease is wandering, what you want to begin to do is use an ABC
model of behavior change and problem solving. A -- looking at antecedent, which is what
happened before the B -- behavior and the C -- the consequences of what happened after the
behavior. A -- looking for what may have triggered the behavior. You're becoming a scientist. You
can take out your emotionalism by figuring out the behaviors. Do they seem to wander at certain
times of day, like after lunch, or when they see somebody putting on a coat to go outside. Then
you need to also look at what happened after the behavior occurred. Did you pay more attention
to the person? Did they go outside and calm down? Did they get more agitated? It takes a bit of
observation. It is surprising that most behaviors are not aimless, meaningless behaviors but
actually have a trigger. That's the A. You can intervene and change the behavior by looking at
them. There are video tapes about A B C techniques that are available with national
organizations. The technique is described in many caregiving books. The key is stepping back for
a day or two and observing. You will be surprised at what some of the triggers may be. Because
they can't express it, you didn't realize. When they get hungry, they begin to get agitated.
Herz: Sometimes the behavior is based on long-term routines. The person always got up at five
in the morning to get to work and once they're no longer able to go to work, they may not realize
that any longer but they're still used to that routine. Another thing to keep in mind when you are
looking at behavior that is troubling or raises concern. Many people react strongly with troubled
behavior and again, it is important, critical to have a thorough medical evaluation, and I strongly
urge that evaluation to be conducted by a geriatric assessment team consisting of a geriatrician,
geriatric nurse practitioner, gero-psychiatrist and probably you'll call in a neurologist.
Dr. Benton: Assuming we're dealing with a caregiving situation for someone over 65. Caregivers
and family website, www.caregiver.org. There's also another which is www.careguide.com,
www.aoa.dhhs.gov (Administration on Aging).
Moderator: As the Baby Boomers enter retirement age, do you think there will be increased
public awareness of caretaking issues?
Dr. Benton: You bet. 100%.
Herz: They'll be playing a different kind of music in the nursing homes, too.
Moderator: Thank you for joining us today, Dr. Benton, Ms. Herz. WebMD members, please join
us every Thursday at 1 pm EDT here in the Senior Vitality Auditorium for our live weekly event.
Herz: Thank you.
Dr. Benton: Thank you.
The opinions expressed by Dr. Benton and Ms. Herz are theirs and theirs alone. If you have any
medical questions about your health, you should consult your personal physician. This event is
meant for informational purposes only.
This article is from the WebMD. If the address is still the same, it can be found at:
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