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Amy Hosier, Family Life Specialist & Robert Flashman, Family Resource Management Specialist Caregiving 101

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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

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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

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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

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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

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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.

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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

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Caregiving is not just for old people! Source: 2009 American Community Survey

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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

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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

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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.

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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

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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

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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.

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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.

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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

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Aging and Caregiving Prepare to Care (AARP) Prepare to talk Form a team Assess needs Make a plan Take action

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Let's face it! WE have MS. We're on this powerful trip together. It wasn't planned this way far from it.

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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.

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Protecting Your Retirement

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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

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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

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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.

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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

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Practical Aspects to Consider Home Tasks of Daily Living Time Support, including financial

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Emotional Aspects to Consider The Care Recipients Needs Your Familys Needs Your Needs

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... Caregivers who get help are less likely to burn out and better able to provide long-term support.

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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

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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

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Common types of help, cont. In-home nurses and therapists Home health aides Daycare services ADA Schools Hospice care

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Common types of help, cont. Relief for Caregivers Social services/geriatric care managers Support groups Respite care

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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

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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

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Family Caregiver Health Bulletins http://www.ca. uky.edu/hes/ind ex.php?p=251

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Questions? For more information, please contact: Amy F. Hosier, PhD amy.hosier@uky.edu 859.257.1763 Bob Flashman, PhD rflashma@uky.edu 859.257-7758