Between a Rock and a Hard
Place: Navigating the Challenges
of Family Caregiving
Exercise
• Take a piece of paper
• Divide it into 3 equal columns
• First column: Write in the words, “Paid
Caregiver”
• Second column: Write in the words, “Me”
• Third column: Write in the name of your
loved one receiving care
Exercise, continued
• Under the first column, write in some of
the challenges you have with the paid
caregivers. These challenges can include
having a stranger in your home; not
knowing how to handle problems such as
chronic lateness; or issues about the
caregiver’s relationship with your family
member
Exercise, continued
• Under the third column, write in some of
the challenges you have with your family
member. These may include disruptive
behavior; physical strain of care; or issues
with medication
Exercise, continued
• Under the second column, write in some of
the challenges that you face caring for
yourself. These may include not having
enough time; feeling pulled in too many
directions; or guilt about taking a vacation
What we hope to achieve:
• After attending this session, we want you
to be able to:
– Negotiate boundaries with paid caregivers
– Communicate effectively with paid caregivers
– Increase repertoire of caregiving skills specific
to family members with cognitive impairments
– Increase repertoire of skills to care for
yourself and prevent burnout
Some Challenges Associated with
Paid Caregiver
• Stranger(s) in my home
• Persons of different socioeconomic or
ethnic strata
– Can lead to different interpretations of “on
time,” of “care,” of “involved,” of “place in the
family”
• Hierarchy of the home care agency
Boundary Issues
• Is the PCA a friend or employee?
– How do I discuss problem behaviors without
jeopardizing relationships?
• Vulnerability of elder
– Elder gets involved with personal issues of
PCA
• My own feelings
– Jealousy, inadequacy; is the PCA closer to
my family member than I am?
Care Needs
• Is the care recipient really getting what he
or she needs?
• Is the quality of care and the commitment
by the PCA satisfactory?
– If these needs are not being met, how do you
communicate them to the PCA? How do you
communicate your concerns to the agency?
The Triad: You, the PCA, and Your
Family Member
• You may sometimes feel like the middle of
a seesaw as you balance the needs of
your family member on the one side and
the responsibility of working with a paid
caregiver and the agency on the other
• Good communication skills can help you
address problems and issues without
inadvertently creating more
Why are we talking about
communication?
• Challenge to communicate with loved
ones who have dementia or are ill
• Challenge to have strangers come into
your home and care for your loved ones
• Differences between you and the PCAs
can cause communication difficulties
– Different ethnicities, socioeconomic strata
Communication
• We think we are communicating, but are we?
– We may be sending unintended messages, either
nonverbally or extraverbally
• Opposite-speak
• Sarcasm
– Sometimes, we are sending intended messages, but
cloaked in pointed humor (this way, we can deny it if
the interaction becomes uncomfortable
• We think we heard the message, but did we
interpret it correctly?
Giving respect - names are
important
• Call people what they want to be called: If
her name is Mary Jones, do you call her
Mary, Ms. Mary, Miss Mary, Mrs. Mary,
Ms. Jones, Miss Jones, Mrs. Jones?
• Be clear about how YOU want to be
addressed and how you want your family
member to be addressed
Communicating with Clarity and
Respect
• Avoid “opposite speak.” Opposite
speak is when one uses sarcasm by
saying the opposite of one’s true
feelings in an attempt to express one’s
true feelings. (e.g., I really enjoy being
spat on by people, it just makes my
day!) If what you really mean is that
you don’t like being spat on then just
say, “I don’t like to be spat on.”
Communicating with Clarity and
Respect
• Communication is a two way event
• Listening is an active event
• Listening actively is one way to
demonstrate respect.
Communicating with Clarity and
Respect
• Listening actively requires letting the
speaker know that s/he was heard and
understood.
• Listening actively requires direct eye
contact, sometimes standing or sitting
still, verbal and non verbal gestures,
sometimes writing a note about what is
being said, taking turns, not
interrupting.
Respect is listening
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Listen actively
Look, stop, wait - let them finish
Don’t interrupt
Turn off radio, TV - completely off
Let them know you heard and understood
Paraphrase
Communicating with Clarity and
Respect
• Listening actively let’s the speaker
know s/he is worth listening to.
• When speaking to older individuals
assess the level at which you must
project, don’t assume everyone has
hearing loss and therefore presume to
shout at them.
Communicating with Clarity and
Respect
• When speaking to older people be
certain that side noises (e.g., TV, radio,
traffic noise, other people speaking at
the same time) do not interfere with the
person’s hearing. Sometimes with
older people their ears will hear
background noise just as loudly as
they hear the person sitting right in
front of them.
Communicating with Clarity and
Respect
• Address older individuals with respect
in tone and language.
• Use language of their day, not the most
hip new slang.
• Assertive language is plain and clear –
and respectful of feelings
Communicating with Clarity and
Respect
• Assertive language does not suggest
or imply – it is direct but is respectful of
feelings.
• Assertive - say what is on your mind, but
keep in mind the feelings of others.
• Aggressive - say what is on your mind, but
don’t care about the feelings of others or
deliberate try to hurt or offend them
Communicating with Clarity and
Respect
• Respectful tones and words are as
important during conflict as during
harmony.
• Use gestures if necessary to aid in
communication.
Addressing Unsatisfactory
Performance
First, make sure to review the contract
between you and the agency
If your family member is not receiving the
care he or she is supposed to be
receiving, address it in an assertive
manner
Keep voice neutral, try to keep emotion out
of the interaction
The Other Part of the Triangle: the
Care Recipient
• We talked about ways to communicate
respectfully to the PCAs and agency
employees as you negotiate and advocate
for your family member
• These same principles help when faced
with the difficult task of caring for a loved
one who may not always be cooperative
Cognitive Impairment
• Diminished “brain power” as a result of
temporary or permanent physical changes
in the brain or body
• Can be from dementia (Alzheimer’s AIDS)
• Can be a result of severe mental illnesses,
such as schizophrenia
Common Behaviors in Persons
with Cognitive Impairment
Non-aggressive
• Moaning, repetitious words or sentences
• Wandering, rocking
Aggressive
• Yelling, cursing, screaming
• Hitting, spitting, biting
• Paranoia is not uncommon, especially
when the person with CI is trying to make
sense out of the environment or situation.
Sexual Behavior
• Sexual behavior, such as masturbating in
public is also not uncommon.
• Sexuality is present in aging and disabled
persons, and the confused person is often
seeking sexual solace.
Sexual Behavior
• Persons with CI may confuse another
person for a spouse or may forget they
were ever married.
• Inhibitions are removed, which explains
why sexually inappropriate behavior may
occur in public.
Disruptive Behavior as a method of
communication
• All behaviors, no matter how distasteful,
are the result of your family members’
response to some emotion or fear.
Disruptive Behavior as a method of
communication
• Your family members with CI have difficulty
interpreting stimuli and may react with violence if
they believe that they are being harmed.
• It is important to realize that the person with CI
does not exhibit disruptive behavior because
they choose to, but the behavior is the result of
the dementia—communication patterns are
altered by the disease causing the dementia
Disruptive Behavior as a method of
communication
• Disruptive behaviors can be the result of
your family member’s inability to tolerate
noises, activities, or changes in the
environment.
• They have a reduced ability to filter out
unimportant stimuli, so they are
bombarded with everything equally.
Assessing reasons for disruptive
behavior
• Misinterpretation of surroundings
– Persons with CI have limited capacity for
learning new information.
– Even though they are told several times, “this
is the bathroom,” they may still misinterpret
the surroundings and may react with fear
– Vision and hearing impairment may further
create problems with correct interpretation
Assessing reasons for disruptive
behavior
• Pain and painful procedures
• May be aggravated by your family
members who are resistant to taking
medication and may not receive their pain
or psychiatric medications
Assessing reasons for disruptive
behavior
• Stress
• Sensory overload
• Meaningless noise
Assessing reasons for disruptive
behavior
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Desire for immediate attention
Loss of control/autonomy
Fatigue
Desire for sexual intimacy
Change in routine
Psychiatric co-morbidities
Strategies for coping with disruptive
behavior
• Determine antecedents to the disruptive
behavior
Strategies for coping with disruptive
behavior
• Bathing is a usual antecedent.
• If water is near the face or head of a
confused person, he or she may react in
an aggressive manner
– May need to avoid tub baths, use baby wipes
or warm damp washcloths for different body
parts
Strategies for coping with disruptive
behavior
• Have your family member control the flow
of water (e.g., using a hand-held shower
head to direct the flow of water)
• Let your family member get into the tub
slowly
• Approach your family member in a relaxed
manner
Strategies for coping with disruptive
behavior
• Less likely to provoke agitation. If one
approaches a confused person in an
authoritarian or “bossy” manner, your
family member may react in an
unfavorable way.
• Avoid being focused solely on the task
• Sometimes, your family member does not
understand what is expected of him or her
with a specific task, and may become
frustrated and act out.
Strategies for coping with disruptive
behavior
• It is a good idea to talk to your family
member about personal things of interest
to him or her during tasks (e.g.,
grandchildren, previous occupation,
favorite activities)
• Be flexible in approach with your family
member
• The use of gestures and pantomime to
show your family member what you want
him or her is helpful
Strategies for coping with disruptive
behavior
• Do not limit your conversation to your
family member because of the confusion.
• “Chatting away” with your family member
has been shown to improve agitated
behavior.
• Your family member may respond to the
verbal stimulation.
Strategies for coping with disruptive
behavior
• However, when asking your family
member to do something, use short, onestep REQUESTS, not commands.
• Do not keep repeating the same request,
otherwise your family member may
become agitated
• Show interest in your family member, both
verbally and nonverbally
Avoid interruptions
• Studies have shown that interruptions
resulted in increased agitation and tension
on the part of your family member and
decreased flexibility and personal contact
on the part of the nursing assistant.
• Stay off of the telephone while doing care
More Strategies
• Remember not to take aggression
personally, unless you have deliberately
done something to provoke your family
member, it is not your fault!
• Praise your family member in an adult-like
manner.
• Have manipulatives in the environment
More Strategies
• In the home environment, have items available
that are associated with activities that your
family member previously enjoyed.
• One family kept jumbo blunt knitting needles and
bits of yarn in a basket for their grandmother,
who was an avid knitter prior to the dementia.
She derived comfort from sitting and holding the
items in her lap.
More Strategies
• Use touch judiciously
Some your family members respond well
to touch; others may react negatively.
• Find what works with your family
members.
More Strategies
• If your family member is already agitated,
touching in a forceful manner may
escalate the agitation
• Remove your family member from the
area, if possible
• If your family member is engaging in
sexually inappropriate behavior (e.g.,
masturbating in public), will need
redirection.
More Strategies
• Distraction
• Humor or playful responses may divert your
family member’s attention from the discomforting
situation and may stop the aggressive behavior
Promote decision making
• Give your family member as much
REALISTIC choices as possible, within
their abilities
• Helps your family members retain
personal power and dignity
Promote decision making
• Shows that you care
• Have your family member do as much
care as possible
• Explain to your family members that doing
as much for themselves keeps their bodies
working properly (e.g., finger strength,
hand coordination)
Promote decision making
• Encourage your family member to use
adaptors
• Sometimes it is faster and easier to do it
yourself, but you are not helping your
family member in the long run
• Make sure the environment is best suited
for the needs of your family member
Promote decision making
• Does your family member like all of the
stuffed animals on his or her bed, or did
someone else place them there because
he/she likes them?
• Does your family member really need the
12 crocheted afghans on her lap or on his
bed?
Questions or Comments?
Group Work
• Think about a difficult situation involving
the care of your loved one
• When you communicated your concerns,
was the situation resolved in a positive
way?
– What worked? What didn’t work?
– Based on what you have learned so far, what
could you have done differently?
“It’s Like Losing a Piece of My
Heart:”
Dealing with Loss, Death, &
Mourning
Loss
• Part of life
• Can be sudden (death of a young
person) or expected (death of a
terminally ill person)
Loss
• Can be bittersweet
– Transition of a child from infant, to toddler, to
preschool, to school age
– Loss of a child leaving home, but going to
college and growing up
Loss
• Some losses seem bad initially, but
then turn out to be a blessing (a man is
laid off from one job, only to find a
better one)
Loss
• When losses are ‘bunched’ together, as in
older years, multiple effects can be
devastating
– Examples of losses in older years
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Death of spouse, family, friends
Loss of home
Loss of employment
Loss of activities
Loss of roles (caretaker, leader)
Loss of own abilities
– Memory
– Functioning
– Independence
Reactions to Loss
• Because losses are personal, reactions
to loss are individualized
– What may be a small loss to me may be a
larger loss to someone else
– The process of grieving is called
“bereavement”
Reactions to Loss
• Although the process is individualized,
there are some general components
– Sadness
• The person is unhappy with the loss. He or
she expresses sadness, cries
– Denial
• “This isn’t happening.” “If I ignore it, I won’t
have to deal with it”
Reactions to Loss
• Anger
– Can be at self or others
– May belittle others, may become a “difficult” or
“demanding” family member
– Sometimes, one family member is a target because
he or she is “safe;” Mom may be angry at her out-ofstate son but vents her anger on her nearby daughter
because Mom is afraid her son will never visit again.
– May express anger by trying to exert control over
those items that the person still has control over
Reactions to Loss
– Blaming
• May seek to make someone else the culprit
for the loss. This is an attempt to make
meaning out of a loss
• May blame self or others: “if only I had
taken my medicine, I wouldn’t have had this
stroke,” or “If only I had a better doctor, I
wouldn’t have needed that amputation.”
Reactions to Loss
– Bargaining
• “If I can learn to walk with this walker, you
will let me go back to my apartment, right”
• Can be with family, health care providers,
even God
Reactions to Loss
– Depression
• The person may lose interest in food,
enjoyable activities
• May sleep all of the time or most of the day
• May cry easily and all of the time
Reactions to Loss
– Acceptance
• Reconciles the loss with overall picture of
self
• Adjusts self-concept to “fill up” hole left by
loss
Reactions to Loss
• This process may take days to years,
depending on the extent and
importance of the loss
– Some people move out of one stage,
only to return to it later
– Some stay “stuck” in stages
Caregiving Strategies
• Avoid even more losses
– Give your family member as much
independence as possible
– Give family members choices regarding meal
ideas, daily activities – make choice options
realistic
– Listen to family members’ ideas about the
care
Caregiving Strategies
– Do not take things personally
• This is also extremely difficult
• No one likes to be the scapegoat, but
realize that your family member is not
striking out at you, the person
• Tell your family member, gently but firmly,
“I don’t like it when you (fill in blank). I
understand that you are upset and hurting,
and I would like to help you”
Death and Dying
• You will be working through your own emotions
as your loved one goes through the dying
process
– Can be prolonged or sudden, no way to predict
• The PCA will most likely be working
through his or her own emotions, too
• What level of intimacy are you going to
allow? What level of intimacy would you
find reasonable or acceptable?
Avoiding Burnout:Caring for
Others by Caring for
Ourselves
Basic Needs
• Food and drink
• Sleep
• Leisure Activities
• Activity
• “I don’t have time”
Nutrition
• Carbohydrates
• Proteins
• Fats
Food Pyramid
• High carbohydrate, low fat
• Works for some people
• High jumps in insulin, followed by blood sugar
drops
• In many people, causes carbohydrate cravings
• Become hungry a few hours after the meal, want
more
Other Options
• High protein, low carbohydrates (e.g. Atkins)
• May be problematic
• Works by putting body in a state known as
ketoacidosis
• People lose weight, but raise triglyceride levels
and are more prone to heart disease, high blood
pressure
Healthier Options
• “Zone Diet” or “South Beach Diet”
• Eat protein at every meal
– Low fat sources: tuna, chicken, cottage
cheese, egg whites
• Balance with “healthy” carbohydrates: fruit,
vegetables
“Healthier Options
• Avoid white bread, white pasta (refined
foods); Eat whole grain breads
• The trick is that the food digests slowly, so
that insulin levels remain constant
• Eat small amounts of fat with meals
Healthier Options
• Read the labels
• “Lowfat” and “nonfat” may have even more
calories than the actual “real” foods
• More sugars added to replace the fat; May
do more harm than good
Exercise
• 2 types
–Aerobic
• Walking, running, swimming, bicycling
• Cardiovascular benefits
Anaerobic
• Lifting weights
• Weight lifting builds muscle so that you
can burn more calories while resting
• You cannot turn fat into muscle!
Anaerobic
• Muscle does not weigh more than fat, but
it is denser!!
• Think of exercise as “recess” or “playtime”
• Helpful to involve friends, children
• Helpful to combine both
Sleep
• Necessity, not a luxury
• 8 hours/24 hours
• Sleep hygiene
– Go to bed at the same time each night, even on
nights off (if possible)
– Avoid using the bed and bedroom for other activities
(eating, paying bills, studying)
– Need for the mind to associate “bed” and “bedroom”
with “sleep”
If unable to fall asleep..
• Avoid caffeine 8-12 hours before bedtime
• Avoid heavy meals immediately before
sleep
• Avoid alcohol
• Try relaxing activities such as warm baths,
calm music
Caring for the
Psychological Self
• Exploring the body-mind connection
– Good physical care equals a healthy mind
• Need down time for thinking and reflection
• Make a definite transition between your
different areas of life, for example, work
life and your home life (transition rituals
can be helpful—taking off shoes, changing
clothes, enjoying the commute)
Caring for the
Psychological Self
• Hobbies are a necessity
• Important to change gears before they
become stripped and worthless
Caring for the Social Self
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Everyone needs friends and fun
Do not wait for a 1 week or 2-week “vacation”
Plan “mini vacations”
Everyone should have at least 1 “fun day” per
week
• Important to have respite caregivers, either paid
or unpaid
– Church volunteers, neighbors, family, friends
– Do not be afraid to ask!!
Stress Management
• Stress: strain or pressure
– Sources: job (problems with supervisors, coworkers, clients), family, societal demands
– Feelings: of pressure, anxiety, “out of control”
– Cannot remove stress
• Can adjust reaction to stress
Stress Management
• Incorporates all of the above, plus
strategies for relaxing
– Guided imagery
– Prayer
– Breathing exercises
Time Management Strategies
• Understand what demands are causing
the conflict
• Strive to achieve a balance between
competing demands
– Knowing your limits can help you to better use
your strengths
– Lower standards…a little bit of dust is OK
Unhealthy Ways to
Deal with Stress
• Eating as stress management
– When stressed, it is not unusual for people to crave
“comfort foods”—e.G. Mashed potatoes, dessert
items, chocolate
– “It’s not what you are eating, it’s what is eating you”
– People do feel better (temporarily) after consuming
certain foods, such as chocolate—certain brain
chemicals are affected
– In the long run, more problems, more stress—vicious
cycle
Unhealthy Ways to
Deal with Stress
• Drinking as stress management
– Binge vs. Constant drinking
– “Need” for a drink to “unwind”
– As need grows, potential for dependency
– CAGE questions—do you have a problem?
• Cut down; Annoyed; Guilt; Eye-opener
Unhealthy Ways to
Deal with Stress
• Other unhealthy ways people “manage”
stress
– Shopping binges
– Temporary euphoria, followed by increased
bills (and increased stress)
– Smoking
– Legal and illegal drugs
GUILT???
• Many people feel guilty or selfish if they
put their needs ahead of others
• Remember the advice from flight
attendants: PUT YOUR OXYGEN MASK
ON FIRST BEFORE ASSISTING
OTHERS WITH THEIRS!!
• Taking time out to care for yourself is not a
luxury but a necessity