Ask Kathy Kenyon about what it's like to be a family caregiver, and she'll give you an earful.
On several occasions, doctors have treated this accomplished lawyer like she was an interloper -- not the person to whom her elderly parents had entrusted health care and legal decision-making.
Kenyon wasn't told how to identify signs that her mother, who had low sodium levels, was slipping into a medical crisis. Nor was she given any advice about how to prevent those crises from occurring.
When her parents -- both with early-stage dementia -- moved to the Washington area, it took months for medical records to be transferred because Kenyon's right to the information wasn't initially recognized.
An aberration? Hardly, according to a long-awaited report released last month on family caregiving from the National Academies of Sciences, Engineering and Medicine, which acknowledges that the nearly 18 million caregivers for older adults (not counting caregivers of nursing home residents) are routinely marginalized and ignored within the health care system.
And the committee responsible for the National Academies of Sciences, Engineering and Medicine report found that by 2030, 72.8 million U.S. residents -- more than 1 in 5 -- will be 65 or older.
The proportion of older adults -- those in their 80s and beyond -- who are most likely to need intensive support from family caregivers is projected to climb from 27 percent in 2012 to 37 percent in 2050, the committee states.
Family caregivers in America perform a number of medical or nursing tasks for their loved ones, including managing multiple medications, providing wound care, giving injections and other duties, according to the AARP.
But little action has been taken to prepare the health care and social service systems for this demographic shift.
"Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked," says Richard Schulz, chairman of the 19-member expert panel that crafted the report and a professor of psychiatry at the University of Pittsburgh.
Deeming that unacceptable, the panel has called for extensive changes to the health care system, including a family-centered approach to care that would recognize caregivers' essential contributions.
What might that look like, practically, from a caregiver's perspective? The report doesn't say, but recommendations can be extrapolated from its findings.
Here are some steps a caregiver can take to be a part of this family-centered approach:
• First, your identity needs to be documented in your loved one's medical records. "We need to start by having a clear sense of who the caregiver is" so that individual can be recognized as part of a team looking after an older adult, Schulz says. Currently, this doesn't happen routinely.
But that's beginning to change. Thirty states, including Arkansas in 2015, and the District of Columbia, the U.S. Virgin Islands and Puerto Rico have now passed versions of the Caregiver Advise, Record, Enable Act, drafted by AARP, which calls for information about family caregivers to be included in hospital medical records.
AARP states that the CARE Act requires hospitals to "record the name of the family caregiver on the medical record of your loved one; inform the family caregivers when the patient is to be discharged; and provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home."
At every doctor's appointment with an elderly family member or friend, check that the record lists your name and phone number, and ask that you be contacted in any kind of emergency.
• Your capacity to provide care to a loved one should be assessed. A classic example: An elderly man with diabetes and severe arthritis who weighs 220 pounds is discharged from the hospital, barely able to walk. His elderly wife, who weighs just over 100 pounds, is his caregiver and she's expected, somehow, to help him get in and out of bed and keep him from falling.
"No one asks you if you're comfortable doing the things you'll need to be doing, if you have the time or what other responsibilities you have," says Laura Gitlin, a member of the panel and director of the Center for Innovative Care in Aging at Johns Hopkins University School of Nursing in Baltimore.
Speak up and tell doctors, nurses or social workers what you can and cannot do. Your abilities and limitations need to be recognized and addressed in every care plan that's developed for your loved one. If you work from 7 a.m. to 3 p.m. and a parent needs help toileting, dressing and eating breakfast in the morning, for instance, that gap needs to be acknowledged and discussed.
There's a lot at stake because unrealistic expectations about caregivers' capacities put the health of senior citizens -- and caregivers' own health -- at risk.
• Training in medical tasks for which you'll be responsible also is a good idea. More than half of family caregivers don't receive training in the tasks they're expected to perform for loved ones at home: dressing wounds, changing catheters, administering medications or managing incontinence, for instance.
Although the CARE Act calls for training to be provided in hospitals and rehab centers, this isn't happening on a widespread scale, yet.
Nothing substitutes for hands-on instruction, usually from a nurse. Be sure to reach out to hospital, rehab or home health nurses and ask for help understanding what you need to do and how to do it.
• Connecting with community resources is a good way to find help. A variety of resources for caregivers is available in many communities: local Area Agencies on Aging, which offer assistance accessing services; centers on independent living, which help people with disabilities; and disease-focused groups such as the Alzheimer's Association, among other organizations.
But too often, "it's not at all clear where families should turn when they get a diagnosis," Gitlin says. "No one tells them who they should contact or which resources might be most helpful."
Ask for this kind of information from your physician's office, discharge staff at a local hospital and people you know in the community. The government's Eldercare Locator (eldercare.gov) is a good place to gather names of local organizations that could be of help.
• And it's very important and necessary you be given access to medical records and information. Misunderstanding the medical privacy Health Insurance Portability and Accountability Act is common and creates barriers to family caregivers getting information they need to oversee a loved one's care.
In fact, medical institutions are obligated to hand over information when an older adult has granted a caregiver a durable power of attorney for health care decisions or a HIPAA authorization specifying that they receive access to medical materials.
In written testimony to the government, Kenyon says she was once told she couldn't walk down a hall to see her father in a sleep center because doing so would violate HIPAA. That was an ill-informed interpretation of the law.
While there's no easy solution, standing up for yourself is essential.
"Advocate for your rights and make sure your caregiving contributions are recognized and supported to the extent they can be," Schulz says. "You're an important person in the health care system."
Information for this article was contributed by Shea Stewart of the Arkansas Democrat-Gazette.
Family on 10/12/2016