What do we know about what supports caregivers? In a previous column I suggested six things; a notebook, knowledge, skills, a plan, occasional respite, and our continued friendship this column is about knowledge.
Truly little, even parenting or work life, prepares us for being responsible for care and support of another adult parent, a spouse, one of our adult children. We care but we do not know how and we cannot even name the unknowns. We are emotionally connected to the care recipient, have history with them that may be good or bad and may be seriously distressed to see them in such a bad place. What do you need to know?
A clear diagnosis: Work with medical providers understand the injury/illness, what symptoms are normal, and what warning signs require immediate medical attention.
Prognosis: Imagine your mom breaks a hip or has a stroke. Listen and learn what the likely care pathway is back to normal (surgery, rehab stay, return home with out-patient therapy, driving evaluation, what the new normal will look like after 30-60 days.
Patient wishes/direction/history: I know we delay talking about these contingencies, but we owe it to ourselves and our elders to talk it out. (This is the 21st century version of the dreaded sex talk we all had when we were teens.) Hopefully in advance of assuming a caregiver’s responsibility we know enough about their values and wish in case we are called on to substitute our judgement in care decisions for theirs. Preparing documents (and knowing where they can be found) such as an up-to-date power of attorney (healthcare and financial), and advance directives. Many health systems require that documents be uploaded into a patient's electronic health record in advance of surgeries or treatments.
Practical’s: Location of the computer password book is essential. If the patient is on Medicare or other insurance having a copy of insurance cards* will be an immense help to understand which medical costs and prescriptions are covered.
Why a copy of the cards? Medicare is no longer one monolithic plan-beneficiaries can elect to a Medicare Advantage plan which may have a different benefits structure than traditional Medicare and many who have opted to go this route are unaware of anything except that they may have no co pay or extra benefits.
Navigation: If you are a caregiver of a frail elder and assume that there is a well-organized care system in the community to support them you are wrong. There is a great deal of fragmented services with some coordination. All publicly funded assistance have strict eligibility rules. A starting places for finding support is the national eldercare locator .
Michael Splaine has worked with older adults since 1986, primarily people with Alzheimer's disease and related dementias, their families and professional caregivers. He is the principal of a small advocacy and government affairs consultancy and has collaborated with leaders in Alzheimer's organizations across the U.S. and in more than 60 countries, representing them at the World Health Organization and the United Nations. His columns will provide information and perspective on aging issues.
