INDEX Caregiving P. 2 Does your Home Meets your Caregiving Needs? P. 5 Family Caregiver Self-Care Tips P. 9 Medicare: What Caregivers Need to Know P. 11 Directory: Caregiver support organizations and elder services in Miami-Dade County P. 19 Online Support Groups for Caregivers P. 25 Funding for this resource guide was provided to The Center on Aging of Florida International University from the Alliance for Aging, Inc., through a Caregiver Demonstration Project Grant funded by the U.S. Administration on Aging, Grant #0985-006.2Caregiving1 An estimated 19-22% of families across the U.S. may be caring for an adult with a cognitive impairment. Cognitive impairments include a variety of diseases and disorders such as Alzheimer’s disease, Parkinson’s disease, stroke, head injury or AIDS dementia. Although each disorder has its own unique features, family members and caregivers often share common problems, situations and strategies, regardless of the diagnosis. Cognitively impaired persons typically require special care, including (often 24-hour) supervision, specialized communication techniques, management of bizarre or difficult behaviors, incontinence, and help with activities of daily living (ADLs), e.g., bathing, eating, transferring from bed to a chair or wheelchair, toileting and/or other personal care. While each caregiving situation is different, caregivers are likely to experience enormous stress from their responsibilities in caring for a loved one. Many individuals become depressed or anxious and others report physical ailments associated with the stress of caregiving. For this reason, finding practical ways to cope and get help are especially important. Caring at Home Caregivers often learn through trial and error the best ways to help an impaired relative maintain routines for eating, hygiene and other activities at home. Special training in the use of assistive equipment and managing difficult behaviors may be needed. It is also important to follow a safety checklist. Be aware of potential dangers from: • Fire hazards such as stoves, other appliances, cigarettes, lighters and matches; • Sharp objects such as knives, razors and sewing needles; • Poisons, medicines, hazardous house-hold products; • Loose rugs, furniture and cluttered pathways; • Inadequate lighting; • Water heater temperature—adjust setting to avoid burns from hot water; • Car keys and/or spark plugs—do not allow an impaired person to drive; • Items outside that may cause falls, such as hoses, tools, gates. Be sure to provide: • Emergency exits, locks to secure house, and, if necessary, door alarms or an identification bracelet and a current photo; 1 Source: Family Caregiver Alliance in cooperation with the State of California's Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of brain-impaired adults. Funded by the California Department of Mental Health. Revised September 1999. ©All rights reserved.3• Bathroom grab bars, non-skid rugs, paper cups rather than glass; • Supervision of food and alcohol consumption to ensure proper nutrition and to monitor intake of too much or too little food; • Emergency phone numbers and information. Managing Problem Behaviors Individuals with cognitive impairment may experience a range of behavioral problems including communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, lack of motivation, memory problems, incontinence, poor judgment and wandering. Helpful suggestions for managing these problems include keeping language simple and asking one question at a time. Break down tasks and questions. For example, instead of asking, “would you like to come in and sit down and have a snack?”, use simple commands such as, “come here,” “sit down,” and “here’s a snack.” Wandering and poor judgment may signify the need for 24-hour supervision. Be sure to run through the home safety checklist. In addition, learn whom to contact in your community in case of an emergency. You may wish to consult with friends, family, church groups, social service agencies, senior centers and support groups. If wandering or aggressive behaviors are problems, contact with emergency police, fire and medical systems may be necessary. Further readings on behavior management strategies are included under the Recommended Readings section in this fact sheet. Taking Care Of Yourself Some caregivers are reluctant to acknowledge the strain associated with the many tasks, responsibilities and long hours devoted to the caregiving role. Many feel overwhelmed or burned out. It is important not only to give yourself credit for the work you are doing as a caregiver, but also to arrange for some support and an occasional break from daily duties. While extended vacations may not be realistic, it is critical for everyone to schedule some relaxation time for themselves. This may be a short outing, quiet time at home, a visit with a friend, etc. In order to get time off, the caregiver may require respite care/assistance from others to stay with the patient. Monitor your own health; stress may contribute to a variety of health problems. Balanced meals, adequate sleep, and attention to persistent ailments are essential ways to take care of yourself. They will also enhance your physical ability, coping skills and stamina to provide care. By taking care of yourself, you will be better able, both physically and emotionally, to provide care for your loved one. The isolation often felt while caring for an impaired loved one at home can be devastating in itself. For many, this is eased by attending support group meetings with other persons in similar situations. Support groups provide emotional support and caregiving tips, as well as information on community resources from others who have learned from experience. Online support groups on the Internet can be very helpful. Therapeutic counseling may also be beneficial for further problem solving. A professional counselor can help you cope4with feelings of anger, frustration, guilt, loss, or competing personal, work and family demands. Defining Needs and Planning for the Future Financial and legal planning are important to consider. Issues such as financing long-term care, protecting your assets, obtaining the authority for surrogate decision-making, and other matters often need