2019 caregiver summit

More than 300 caregivers gathered Nov. 1 for support and education during the WellMed Charitable Foundation’s 2018 San Antonio Caregiver Summit, Navigating the Journey.

The summit, held at the Whitley Theological Center in San Antonio, Texas, featured John Leland, New York Times reporter and author of Happiness is a choice you make: Lessons from a year among the oldest old and Dr. Sharon Lewis, recognized caregiver expert and creator of the Stress-Busting Program.

With more than 43,000 informal caregivers in the United States, the annual Caregiver Summit plays a vital role in helping caregivers, providing support and information to help them cope with their important work.

This year’s summit is the third for Mayra Mendoza. The youngest of eight children, Mendoza started caring for her parents after her mother developed dementia.

At first, Mendoza cared for her parents part time while working full time, but has now quit her job and moved in with them to provide more intensive care.

“I thought I might regret moving in with them, but now I’d do it all over again,” Mendoza said. “It’s the hardest job of my life, and the best one, too.”

Feeling more confident about her role in her parents’ lives, Mendoza feels she can help younger caregivers like herself.

“At 32, I’m not like a lot of the caregivers here,” she said, indicating the mostly older people in attendance. “Many of these caregivers are retired and have a pension; I don’t have that and I know what it’s like. I’d like to reach out to the younger caregivers.”

The summit also featured lunch and complementary flu shots provided by WellMed. Attendees also had the opportunity to experience a Virtual Dementia Tour, a tool used by UT Health San Antonio to educate nursing students. Other resources included a panel discussion with local caregivers, and information from agencies such as the Alamo Area Council Of Governments, VITAS Healthcare, Area Agency on Aging and the Alzheimer’s Association.

Congratulations to the WellMed Charitable Foundation for another successful caregiver summit!

By Carol Zernial
WellMed Charitable Foundation Executive Director

The hospital. On the scale of caregiver heavy lifting, a hospital visit of any kind requires all hands on deck. Two weeks ago, I was meeting with hospitals who are trying to create robust programs helping family caregivers. This past week, I had two hospital visits among my family members for some first-hand experience. It’s probably not a surprise to find out these experiences went from very good to very not so great.

I came away from my meeting with the hospitals — who were working on identifying caregivers and ensuring they were empowered as part of the care team — feeling overwhelmingly positive. I was impressed to learn that some family caregivers were given official badges, employee discounts in the cafeteria, included in the care team meetings, and trained to get fresh blankets and water for their loved ones. It is indeed heartening to know that some hospitals are taking the Caregiver Advise, Record, Enable (CARE) Act seriously. They are identifying the caregivers involved and ensuring they have the information they need before the loved one is discharged. Family caregivers can help make the hospital stay, and transition to home or rehabilitation facility more successful when they understand what needs to happen, as well as accept their role.

Within a week of returning home, I got to put hospitals to the test on my own. When the first of my family members went to the hospital, it was a scheduled procedure. While I received only cursory attention from the physicians providing care, one of them did come back to the waiting room when he missed me to ensure I got a first-hand report, an extra effort I appreciated. The receptionist in the waiting room was lovely – getting up from her desk when things slowed down to check in with each family sitting in the chairs. She provided coffee, directions and comfort. The nurse in recovery was very helpful and happy to include me in the recovery process. Score one for the hospitals.

The second hospital involved one of my older family members in another state. This was not a positive experience at all. In fact, no one called to tell us, his closest relatives, that he was even in the hospital. He lay there completely alone for five days of tests and was returned back to the nursing home when they couldn’t find anything – too weak now to even get out of bed. He told us that he wanted to call us, but he couldn’t reach the phone from his bed. Heartbreaking. He may have been too frail or confused to ask, so why didn’t anyone ask him about his family. Just because he lives in a nursing home doesn’t mean that family members are not involved.

No score for this hospital and take extra points away from the nursing home who never called either.

I guess the final tally for the relationship between family caregivers and hospitals is somewhere between trying to get better and couldn’t get much worse. It certainly seems like one family member got better care because I was there, and the other left to decline because no one was there as his advocate.

My take away is that good care is a deliberate process for both family members and medical staff. I’m less concerned if the rationale to improve is monetary, regulatory, customer service oriented, or common sense. I applaud all efforts to support family caregivers in hospitals and across the health care system.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at CaregiverSOS.org or toll-free at 1-866-390-6491.