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Slide 1
Amy Hosier, Family Life Specialist & Robert Flashman,
Family Resource Management Specialist Caregiving 101
Slide 2
Family Assets Study designed to give voice to the diversity of
adults, youth, and experiences that make up the modern American
family (p. 1) developed to capture the diversity of ways family
members support one another through their day-to-day interactions
(p. 2). demonstrate[s] ways adults and youth pull together and
bring out the best in one another (p. 1). (Search Institute, 2012)
Nurturing Relationships Establishing Routines Maintaining
Expectations Adapting to Challenges Connecting to Community
Slide 3
Families Support Each Other Through CAREGIVING There are only
four kinds of people in this world. Those who have been caregivers,
those who are caregivers, those who will be caregivers, and those
who will need caregivers. ~Rosalie Carter, Former First Lady;
Rosalyn Carter Institute for Caregiving Families Support Each Other
Through Caregiving
Slide 4
Definition Caregiver: anyone who provides assistance to someone
of any age who is ill or disabled and in need of help. There are 2
types of caregivers: formal and informal
Slide 5
Formal Caregivers: paid care providers associated with a social
service or health delivery system (includes professional
caregivers). Professional Caregivers: Limited time of contact with
patient Limited knowledge of patient Very structured environment
and role Goal oriented Finite Formal Caregivers
Slide 6
Informal Caregivers Informal Caregivers: unpaid individuals
such as family members, fictive kin, friends, and neighbors who
provide care. Long-distance Caregivers: individuals who provide
care/support and make or help make care decisions from a distance.
Primary Caregivers: individuals who frequently provide the majority
of the hands-on care, make most of the personal care decisions, and
coordinate most of the personal care services to meet the
care-recipients needs.
Slide 7
Who are the Family Caregivers? 66% of caregivers are women
(avg. of 21.9 hours/week) Average age: 48 Males less likely to
provide personal care More equal gender participation among
caregivers for those 18- 49 years old Research suggests that the
number of male caregivers will increase due to a variety of social
demographic features Among spousal caregivers age 75+, both sexes
provide equal care
Slide 8
Caregiving is not just for old people! Source: 2009 American
Community Survey
Slide 9
Disabilities in KY % of Population 5+ years with disabilities
Any type of disability18.9 Hearing5.2 Vision3.4 Cognitive7.8
Mobility11.1 Daily Activity Limitation8.1 Self-Care Activities3.9
Routine Activities7.3 No Reported Disability81.1 Source: 2009
American Community Survey
Slide 10
Children and Disability IDEA defines a child with a disability
as any child who has: mental retardation, hearing impairments
(including deafness), speech or language impairments, visual
impairments (including blindness), serious emotional disturbance
[], orthopedic impairments, autism, traumatic brain injury, other
health impairments, or specific learning disabilities; and who, by
reason thereof, needs special education and related services.
Children = age 5 to 17
Slide 11
But as the Wimsatts and so many other parents have learned,
with support, planning, and access to the right resources, it can
also be life-affirming.
Slide 12
Children and Disability Overwhelming Daunting Demanding
Challenging Different Reconfigure life Round-the-clock care
Immersion in the medical world Be proud Acknowledge and share your
feelings, even anger toward the child, embarrassment, frustration
Make needs known Set up a support system (family, friends, church,
medical professionals, formal caregivers, support groups, parenting
networks, conventions) Seek emotional support Learn as much as
possible about the disability Sort through fact and misconceptions
Take advantage of mandated early- intervention programs (ADA of
1990) Find Balance Learn to adapt Find a positive attitude and seek
joy in experiences
Slide 13
Teens and Young Adults Barriers to successful transition for
young people with disabilities include: low expectations by parents
and other significant people in the community lack of knowledge of
existing career and vocational education services lack of
self-advocacy skills Transitioning to adult independence Assessment
Planning Intervention Support systems Realistic expectations for
skill development, attitude, behavior Skill development
Self-sufficiency Community Resources
Slide 14
God and the prayers of many people helped me and my family get
through the tough times in the hospital. In the future, I would
like to farm.
Slide 15
Military Caregiving When Jennifer and Brian Jergens married and
Brian deployed to Afghanistan two weeks later, Jennifer thought one
of two things would happen: Her husband would come back fine or
he'd die. "I never thought about the in-between," she said. On Aug.
7, 2011, the "in-between" barreled into the Jergenses' lives.
Brian, at the wheel of a Humvee, hit an improvised explosive
device. The Army sergeant suffered a traumatic brain injury and
lost both legs, a finger, his spleen and much of his hearing. In
the year and a half since, Brian, 24, has made progress regaining
his speech and learning to walk on his prosthetic legs. As for
Jennifer, 20, she went from taking classes at De Anza College and
teaching swim lessons to becoming her husband's full- time
caregiver.
Slide 16
Military Needs are a Little Different An estimated 275,000 to
one million military caregivers serve or have served our nation by
providing day-to-day care to American heroes The average military
caregiver is a younger woman with dependent children In addition to
typical caregiver responsibilities regarding physical and emotional
care balanced with child-rearing and full time employment, the
military caregiver is tasked with: Acting as a case manager within
multiple health systems Playing advocate for new treatment Playing
advocate for financial and legal representation As a result,
military caregivers more than most caregivers, suffer from mental
health and emotional difficulties in addition to common caregiver
risks
Slide 17
Aging and Caregiving Prepare to Care (AARP) Prepare to talk
Form a team Assess needs Make a plan Take action
Slide 18
Let's face it! WE have MS. We're on this powerful trip
together. It wasn't planned this way far from it.
Slide 19
Source: Professionals Networking for Caregivers (PNC) My
husband spoke often of our golden years. He started losing memory
about 10 years ago. The kids are all grown and have left town. Now
I am alone. My husband cant feed himself anymore. He still sees me
as his wife, but alsoI am a CAREGIVER.
Slide 20
Protecting Your Retirement
Slide 21
Why do we become caregivers? Love Desire to help someone stay
in familiar setting Cost Sense of duty Sense of worry that no one
else will provide good enough care *A high percentage of caregivers
feel positive about the experience
Slide 22
Family Assets Study designed to give voice to the diversity of
adults, youth, and experiences that make up the modern American
family (p. 1) developed to capture the diversity of ways family
members support one another through their day-to-day interactions
(p. 2). demonstrate[s] ways adults and youth pull together and
bring out the best in one another (p. 1). (Search Institute, 2012)
Nurturing Relationships Establishing Routines Maintaining
Expectations Adapting to Challenges Connecting to Community
Slide 23
So I soldiered on. In the end, I was filled with great
satisfaction and peace, knowing that my parents had received the
very best in care and love and human contact throughout.
Slide 24
When Caregiving Chooses You: Unforeseen Event or Crisis When it
comes to caring for a loved one, most families dont have a plan
until there is a problem
Slide 25
Practical Aspects to Consider Home Tasks of Daily Living Time
Support, including financial
Slide 26
Emotional Aspects to Consider The Care Recipients Needs Your
Familys Needs Your Needs
Slide 27
... Caregivers who get help are less likely to burn out and
better able to provide long-term support.
Slide 28
Family Assets Study designed to give voice to the diversity of
adults, youth, and experiences that make up the modern American
family (p. 1) developed to capture the diversity of ways family
members support one another through their day-to-day interactions
(p. 2). demonstrate[s] ways adults and youth pull together and
bring out the best in one another (p. 1). (Search Institute, 2012)
Nurturing Relationships Establishing Routines Maintaining
Expectations Adapting to Challenges Connecting to Community
Slide 29
Common types of help Day to Day Help: Family/Friends
Companionship services Telephone reassurance Help around the House
Laundry, cooking, errands, grocery shopping, bathing/dressing,
minor maintenance/repairs Meal Programs Delivered or group
settings
Slide 30
Common types of help, cont. In-home nurses and therapists Home
health aides Daycare services ADA Schools Hospice care
Slide 31
Common types of help, cont. Relief for Caregivers Social
services/geriatric care managers Support groups Respite care
Slide 32
How to Find and Connect with Community Services Identify needs
Do your research Compare costs Check for quality of services Get
referrals Be organized Be sensitive to the care recipients
reactions
Slide 33
I would like to help other caregivers with their physical and
emotional roller coaster. That is exactly what my 5 years were
like. However, while going through it, you don't mind because you
love a wonderful wife of 45 years. Now, after 4 or 5 years of
getting back to normal, whatever normal means; I would like now to
help other caregivers with their roller coaster. One of the very
first things I will say is, you will get through it, DON'T DESPAIR.
Bob Coyne, Knoxville, TN
Slide 34
Family Caregiver Health Bulletins http://www.ca.
uky.edu/hes/ind ex.php?p=251
Slide 35
Questions? For more information, please contact: Amy F. Hosier,
PhD [email protected] 859.257.1763 Bob Flashman, PhD
[email protected] 859.257-7758