|Jessica Snell, Vicky Hartzler, WyAnn Lipps, Linda Fisher|
When Jim was first diagnosed with an Alzheimer’s type of dementia, I began a quest to learn as much as possible about the disease. I attended walks, forums, symposiums, and training sessions. I read books about Alzheimer’s and inspirational books trying my best to stay positive. Becoming a volunteer and advocate helped me believe, that in some small way, I was helping in the fight against Alzheimer’s.
I was excited when Adam Timmerman from Congresswoman Hartzler’s office called me to discuss early plans for an Alzheimer’s forum in Sedalia. We had not had an Alzheimer’s program in our hometown for several years.
Adam’s planning resulted in an outstanding program. The first speaker of the day was Joel Shenker, MD PhD, a neurologist and cognitive psychologist. Adam couldn’t have found a more knowledgeable or dynamic speaker.
|Dr. Joel Shenker|
Dr. Shenker gave an overview of the disease along with prevalence and the personal and financial cost. He explained biomarkers, discussed research, and explained the different kinds of brain scans.
The truly outstanding element of Dr. Shenker’s presentation was how he shared information in a way that made it easy to understand. The cornerstone of his message was “We need a culture shift.” He said that we do not handle dementia well. Most people with dementia are undiagnosed and not treated. This means that a bus driver, a pilot, or a person in a leadership position could have undiagnosed Alzheimer’s disease.
Research shows that most people with Alzheimer’s do want to know. Dr. Shenker said, “People can overprotect you, which robs you of your independence.” Think about those words and let them really sink in. In the early stages, input from the person with the disease can help them chart their own course.
I knew from personal experience that this was important information for the caregivers in the room. When Jim’s test results showed he had brain atrophy, his neurologist told us to get our affairs in order. Talk about scary words to people in their forties. He asked Jim, “Who do you want making decisions for you when you aren’t able to make them? Strangers, or your wife?”
“I want her to make them,” Jim said.
I shared some of my experiences as a caregiver with a “Caregiver Emotions” presentation. Emotions at the top of a caregiver’s list are guilt, resentment, anger, worry, loneliness, defensiveness, and grief. These emotions can be harmful to the health of the caregiver, so it is important to know strategies to take control of them.
The program ended with two panels. The first panel included a support group facilitator, a geriatric physician, a nurse with care planning experience, and a social worker. They each gave brief descriptions of what they did and answered numerous questions from the audience.
The second panel was made up of the Sedalia Walk to End Alzheimer’s chairs, Jessica Snell and WyAnn Lipps, and an Alzheimer’s advocate (me). Jessica and WyAnn talked about the Walk, the committee, and the need for community involvement. I talked about how anyone can be an advocate and stressed that we work with all political parties. Alzheimer’s is a bipartisan problem and requires a bipartisan solution.
The forum was a great success! On behalf of the participants, I would like to extend our great appreciation to Adam Timmerman and Congresswoman Hartzler for making this an event to remember.
Copyright © November 2016 by L.S. Fisher