Alzheimer’s Association Volunteer
For more than 17 years I have been working for or with the Arkansas Chapter of the Alzheimer’s Association. Through the years I have held many volunteer positions with them. In the early days, I even worked for the association.
The most rewarding position was as a Family Support Facilitator. I had the privilege to help families of individual that are taking care of a loved one with some form of dementia. Even though Alzheimer’s is the highest percentage of persons with dementia, there are several other dementia diseases that affect people. People cam to the Support Groups to seek information, look for some comfort, or just be around others that are going through the same issues. It was very therapeutic for some just to know that they were not alone and that they did not have to go through this alone. I also was invited to be mentor for a few newly forming Support Groups.
What happens during a Support Group you may ask? It is a time for caregivers to talk about their particular issues. Many times, other caregivers there would give their own experience with the same topic. Some times I just sat back and let the family member/friends just talk about their day-to-day problems. Sometimes they just wanted to get things off their chest. We cried from time to time. It was very difficult to keep my own emotions in check. Sometimes I didn’t. I made sure that everyone there had an opportunity to be able to speak. I felt that it was good for them to talk with others with similar problems. There were times that I had guest speakers to come in to talk about items of interest for the group. I would have dietitians, audiologist, senior law lawyers, and RNs to answer questions. The support groups were one of the best times working for the Alzheimer’s Association.
Another aspect of my volunteer work was being able to go around the state and teaching groups about the Alzheimer’s disease. Weather it was for a few people or for a large crowd it didn’t matter. It was a privilege to be able to talk to people that wanted to learn more about the disease. I count it as a big part of my teaching ability. I can’t do it anymore. I get lost in my conversations with others. I know the material but I just can’t get it to come out. IT is very frustrating. So, I had to give up on this passion. It is and was a difficult decision. I looked forward to each time I got up in front of people willing to listen. I had the opportunity to give an interview with KARK, Cassandra Wedd reporter, on Wandering. I had to reread the material over and over to get it back fresh in my mind before the interview. Here is a link to the interview.
There are times that I want to get back into the teaching routine, but I fear that when giving a talk that I will freeze up and not be able to get back o track. I have even done that when talking to friends at home or out and about. It is a true feeling and worry for me. That is what is so difficult to handle is that I could talk to anyone or group and be I total control. Not anymore.
Edie and I have also loved the Walk to End Alzheimer’s. It is one of our favorite times of the year. It is so exciting to see hundreds of individuals with individual stories getting together for one cause. Seeing their faces and joy is exciting. Some faces are those who have lost loved ones to this disease and those still dealing with it. It is a great time to just have fun and be with others that that are walking the same path as you. One of he best things that we have done is be in the Advocacy Tent. Telling people how important it is the talk to their state and federal representatives and senators about the need for funding for research and be an advocate for the Alzheimer’s Association. Edie and I had the privilege to one of the representatives from Arkansas to go to Washington DC to talk to our leaders. They really listen to our stories about our loved one and theirs and our struggles. The Associations States advocacy groups have really help in getting the Congress to increase funding from the NIH, National Institute for Health. There have been some break throughs but there is a lot more that can be done with their help.
Lastly, I have the honor to be on the Board of Directors for the Arkansas Alzheimer’s Association. I am very proud that I was asked to be a part of this great group. I have asked the Arkansas Executive Director if she it would be ok to step back from my duties of the Board. She asked me to stay with the board because I have some much experience with the Association. She said that I could be a real advocate and help with other dealing with the disease themselves. I will help as long as I can.
All these things I and Edie have been apart of for 17 years. We are going to do all we are able to do for as long as we/I can.
My Journey with Dementia 