PART 3: The benefits of a support group

This is the third in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara who has been struggling with this disease for over fifteen years.

At this point in time most family members and caregivers have no idea of what Alzheimer’s is all about and the steps necessary to help the patient. A great source of information that is available in many communities is an Alzheimer’s Support Group. I can vividly remember my first encounter with the group in Webster. Our children had been trying for several years to get me to go to a meeting and I kept saying I didn’t need any help. Finally in January of 2005 I relented and went to the meeting with three of our children. As I recall there were about six people there and the facilitator. After all of the introductions were done those around the table spoke of their loved one and some of the issues they had. I discussed my wife and some of the issues at that time and the facilitator started to make some observations and suggestions on how best I should take care of my wife. Well, I wanted no part of that. I told her “no one was going to tell me how to take care of my wife, especially someone I’d just met.” My comments were a big mistake, and in hindsight I regret ever saying them, as I would learn so much in the coming months and years.

It wasn’t too long after the first meeting that the “chip” fell off my shoulder and I began the path of learning how to deal with this terrible disease of Alzheimer’s. As I look back, now over seven years ago, I have learned so much as a member of this Support Group and I now try to encourage others to attend and help them because they are not alone in this disease and there are folks out there willing to help and give of their time to help others, people who were total strangers before walking into the meeting. Our family now is the only family still attending from the group that was there in January 2005. The group has grown to over fifteen monthly participants, though sometime fewer are there because they may have decided not to attend that night or may decide not to come any more. We have two co-facilitators who have a wealth of knowledge to share with us.

It takes time for people to adjust to the disease and many are in such a state of denial that they want no part of coming monthly to discuss their loved one's condition. That’s OK, but they will soon learn that they cannot fight this battle alone and be back asking for help. Those of us there share our stories and try to help each other as the disease worsens. We are a select group as caregivers; everyone cannot do what we do on a daily basis. We all want the best care for our loved ones. No two patients will be exactly the same, but many similarities will exist among them. We are also support for each other.

When a new member comes to the first meeting they are agog and have no idea of what to do. They tell the story of their loved one and are looking for immediate responses on how to stop this disease. There is no magic potion that will cure their loved one and we try to lead them on the way in the care and techniques they need to “weather the storm”.

Depending on the situation they bring up, it’s possible that someone else has experienced a similar situation. They are then given some ideas and tips on what to do.

I can remember a situation I had with my wife, who liked to chew on the tops of pencils and ball point pens. One day she chewed the eraser off a pencil as well as some of the metal that holds the eraser. The metal got stuck in her teeth and I nearly lost a finger trying to get it out. In the end, I did get it. Sometimes she would bite the ball point pen at the ink end and get ink in her mouth. As I told this story at one of our meetings, one of the participants who worked with young children, advised me of a product called “Chewy Tube” that she thought might help our situation. The material this product was made of was a hard rubber that children could bite on with no harmful affects. So I contacted the supplier in Arizona and when they arrived I put one on the pencil top she was using and it fit perfectly. I also used it on the pens. After that there were no chewed erasers or pens and it certainly helped to protect her teeth. Had I not been at this meeting I may never have known of this helpful product.

If anyone reading this article has a loved one with early stages of Alzheimer’s and is in need of help, I suggest that you consider attending an Alzheimer’s Support Group meeting in Webster, or if you have one in your community, and I know you’ll be welcomed with open arms by all the members. Everyone sitting in that room has already been where you are and will be willing to help you through this journey. Meetings in Webster are held on the second Monday of the month at the Chester C. Corbin Library, 2 Lake Street, from 6:15 PM to 7:45 PM in the ground floor Conference Room. Don’t be bashful; come join us, you’ll be glad you did.