Who cares for the care giver?
By Herb Drill
It’s a given, as MayoClinic.com noted recently, that Alzheimer's care-giving is a “tough, tough job; physical demands and emotional strains are exhausting. Before you know it, you've drifted away from family and friends - when you need them most. Not only can this be harmful to your physical and mental health, but also it can affect the quality of care you provide. Caregiver burnout is one of the main reasons people with Alzheimer's are placed in nursing homes.”
` Meanwhile, The Wall Street Journal reported,
Still, every caregiver's personal needs vary. Your needs may range from emotional, physical, and spiritual needs to help with day-to-day tasks. A care-giver coach might help you identify challenges and objectives to address them, and remind you of the importance of taking time for you.
What happens when you hire a coach?
At the seventh annual World Congress on Disabilities & Expo at the
Melnicoff asserted: “You make an investment of your time, energy, and resources. You take yourself more seriously, set better goals, and take effective and focused action. You stop tolerating what drains you. Coaching focuses on action, and follow-through to support capable individuals in making desired changes in their life.” She likened a coach to a personal cheerleader “who helps you stay balanced. They offer objective advice, and keep you accountable to your goals; the agenda is yours. A coach may lead you to resources you may not know how to find and is trained to provide appropriate suggestions, offering non-judgmental listening.”
She admonished: Ask yourself - if you were to live your life fully, what is the first change you would make? What do you want more of in your life, and what do you want less of in your life? What are three things you do regularly that don't serve or support you? 'What changes do you want to make to increase your satisfaction?
WCD Expo is one of the largest events for people with disabilities and all who are affected - family members, friends, healthcare professionals, caregivers, and educators. More than 200 exhibitors displayed products and services designed to ease and enrich the lives of individuals facing a range of challenges. “Another winner was an exhibit showcasing the works of professional artists with disabilities,” said William Schwaninger, president/CEO of WCD Expo Inc.” He said more than 80 authorities made presentations designed specifically for people with developmental and physical disabilities, their families, and professionals who serve them. “Some of the world’s leading physicians and healthcare experts provided state-of-the-art solutions and therapies, while individuals who have conquered countless obstacles inspire others to defy difficulty and thrive,” he added.
Also at the World Congress, Dr. Alicia M. Conill described the empathy exhibited by the selfless caregiver as “your pain in my heart.”
Dr. Conill (pronounced Kah-NEEL), clinical associate professor of medicine and psychiatry at the University of Pennsylvania and CEO/medical director of the Conill Institute for Chronic Illness, was a vibrant young doctor when she developed Multiple Sclerosis. Her first reaction was “deep denial, suicidal depression, and later teaching medical students and healthcare workers how it feels to be `dis-abled’.” She developed a curriculum to train medical students in one of “their most pertinent skills: to be empathetic - to care.”
Her graduation from medical school was the happiest day of her life. Years later, she was on the other side of the examination table. She says, "I had no idea what patients go through on a day-to-day basis until it happened to me." 0 Dr. Conill was diagnosed with multiple Sclerosis, a chronic disease that affects the brain and spinal cord. "I remember feeling like my life was over; I knew that I had to give up my medical practice," she recalls. She founded the Disability Experience© at the Conill Institute for Chronic Illness, which assigns some people in the group with a disability has others act care partners.
Dr. Conill says, "They go out into the real world and experience what it's like to go to a card shop and not reach a card, to be looked at in a different way in a cafeteria." She says it's the feedback from program participants that really energizes her. "It touches me to see that they finally get it." Past recipients of the DE training include: University of Pennsylvania Medical school students; Villanova University College of Nursing students; Cerebral Palsy Association (Philadelphia) direct care staff; University of Pennsylvania social work graduate students ad psychological services graduate students, and Lucent Technologies administrators, supervisors, and staff.
The Conill Institute (3535 Market St., Suite 4045, Philadelphia, PA 19104 contact@conillinst.org,
Surprisingly, Dr. Conill explains, “Although two people may have the same disease and degree of disability, their experiences, perceptions, support systems, and coping skills may be quite different. Disease is the biological process; illness is multifactorial and different for each individual. It’s important to be aware of our human tendency to assume someone is `less disabled’ than another because they appear more functional. This includes individuals who may appear `well’ but have waning symptoms or symptoms that aren’t visible. What it appears to be may lead us astray and make judgments or assumptions that are inaccurate.”
She adds, “ Impairment is a physical, mental, or emotional abnormality - having a fractured arm isn’t the norm and can be considered an impairment. Disability is an impairment which interferes with one or more basic ADLs, such as bathing, feeding, dressing, or instrumental activities - balancing a checkbook, paying bills, preparing meals, shopping. A h0handicap is a barrier of some kind which doesn’t allow for an accommodation, that if present, would allow an individual with a disability to perform a specific ADL.”
As for the Americans with Disabilities Act, Dr. Conill sees “a difference between medical definitions of disability and legal definitions. There is and will continue to be significant controversy about what constitutes a disability in the legal sense, especially when an individual claims discrimination and demands compensation on the basis of a disability not meeting the medical definitions described previously.”
Dr. Conill’s admonition for the care-giver comes down to this: “Evaluate the whole patient, and care, even if you can't cure.”