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Caring for caregivers

Caregivers Conference in St. Louis provides support and resources for those who assist with or provide care to an aging or ill person

By Charlotte Beard

There are conferences for just about every trade you can imagine; even working women have their own expo. However, for many it is unheard of to have a conference for those who assist with or provide care to an aging or ill person, whether by profession or simply for a loved one, until last year.

For the second year the Caregivers Conference in St. Louis will take place Aug. 28 at the Paul F. Detrick Building Atrium on the grounds of Christian Hospital located at 11133 Dunn Rd. The conference will be from 9:30 a.m. to 2:30 p.m. and is being presented by Christian Hospital Auxiliary, AARP

– Missouri, and the Christian Hospital Foundation (CHF). Free registration is available online: https://aarp.event.com/ StLouisCares 2018. To register by phone call 877-926-8300.

The idea for the conference originated from the attendance of CHF board member, Ellen Lutzow, at a Caregivers Conference in St. Genevieve, Missouri. Lisa M. Avenevoli, who is also a CHF board member, was instrumental in helping Lutzow present the idea of the conference to the foundation.

R. Diane Hall, Associate State Director of Community Outreach for AARP shared a

2013 study by AARP’s Public Policy Institute, which shows Missouri to have had 792,000 caregivers providing 737 million care hours. The study states that at an economic value of $11.52 per hour that is $8.49 billion of care provided by family caregivers.

“AARP serves the 50 plus community; that’s our membership aid,” stated Hall. “We serve a lot more people, but we work with that group. There are almost 40 million people who provide care to a loved one every year and more than 85 percent of them are

giving care to someone over age 50. So, right there is the heart of what we do. We want to make sure that our members have the services, representation and resources that they need to live their best lives after 50. Helping caregivers is one of those ways.”

Both Hall and Avenevoli shared that last year’s conference received very positive feedback.

Avenevoli stated, “As a financial advisor who sees this on a regular basis with my clients, I walked away learning a lot and I walked away with a huge sense of accomplishment for something I really didn’t have expectations of because we’d never done anything like it before. People came up to all of us and then wrote in afterwards and thanked us for holding this event and for reaching out and realizing that there are so many caregivers out there. Many of them said they never realized all the free resources that are available.”

Hall stated, “If we can take this one part of the day and connect them with the resources and the services that are available in their area and bolster their spirits a little bit, I think that will be a great impact. The more caregivers who know what’s out there for caregivers will have a ripple effect because people who are caregivers talk to one another and share information. So, if we start that ripple with a conference it’s just going to multiply exponentially. That’s what I’m hoping.”

Avenevoli shared, “Most people in attendance filled out a survey (last year) and let us know what they liked and what they would like to see more of. They also (provided) questions so we looked at their questions and tried to focus the speakers this year to answer any questions that weren’t answered last year.”

Avenevoli shared that there will be 22 resource tables.

“Some of those [tables] include veteran benefits, respite care options, medical equipment, and home modification companies. No one will be allowed to sell at the event, but they [can] hand out their information,” she said.

The conference will also include a speaker from the Alzheimer’s Association, two speakers from Christian Hospital, an elder law attorney, and a representative from the Veterans Association. Attendees can expect to hear topics covering palliative care, occupational therapy, incapacity and strategies for continuum of care, and caregiver selfcare. Lunch will be provided for all attendees and complimentary valet parking.

Martin J. Schreiber, former Wisconsin Governor, whose wife Elaine currently lives with Alzheimer’s will be the keynote speaker. It is estimated that he spoke at 130 events last year. He shared that he is very passionate about sharing his and his wife’s experience. At the age of 63, 16 years ago, Elaine was beginning to get lost driving to and from places where she had previously driven. There were other early signs that did not cause him much suspicion, but two years later he got her tested at the advice of

their family physician. An Alzheimer’s specialist found that she was experiencing an early onset of the disease.

“After approximately 12 years is when I realized I no longer could do it alone,” stated Schreiber, “and that (for) me to really help Elaine be who she is now, assisted living was one of the most important and best things I could do for her. Although, it was extremely painful for me to think about having my wife go into a nursing home, I realized that was the best thing for her, the best thing for me, and our children and grandchildren, as well.”

Though Schreiber’s time as governor in the 70s yielded him the accomplishment of putting necessary policies into place for nursing homes and finding ways to enable certain seniors to stay in their own homes rather than be placed into nursing homes, that experience didn’t help him in navigating his wife’s disease.

Schreiber shared, “Knowing that maybe I was helpful in having good inspections and good enforcement, that was comforting, but there is no way a person can prepare for Alzheimer’s with a loved one because it is such a horrible experience with a person who once was (but now) is no more. I don’t know if anything can prepare anyone for this other than once you understand that it’s the situation you’re in then the most important thing a person can do is try to learn about the disease. I contend that if Alzheimer’s is bad then ignorance of the disease is much worse.”

He went on to share the challenge that caretakers have in first caring for themselves.

“You (must) understand as a caretaker that you cannot do it yourself. You need to take care of yourself first and I didn’t understand that. They tell me that 35 percent of the caretakers die before their loved one and an Alzheimer’s patient has a better chance of becoming ill, a better chance of having their savings eaten up, a better chance of job challenges because of the length of time away from work, or just the pressure and the tension that one is experiencing in trying to handle the job and finances at the same time. It’s so important for caregivers to understand that they cannot do it alone. I tried to do it myself and I couldn’t go out asking for help because I thought I could take care of it myself. I was a governor, I am a man, and we men can go any place without asking directions,” he said.

Schreiber expressed that he wants caregivers to try entering the world of a person who is ill, especially those with Alzheimer’s, and understand that they have become a different person.

“You can eliminate a lot of the anxiety, despair, and frustration. And you can capture moments of joy and steal it from the disease simply by knowing more about it.”

Autographed copies of Schreiber’s book, ‘My Two Elaines,’ will be available for purchase at the conference. Also, there are several sponsorships available to support this year’s conference: sponsors for ads in the attendee programs, resource tables, lunch, and snack sponsors. For more information or to sponsor visit: www. christianhospital.org/caregivers or call 314-653-5162.