The Voice of Experience

A story in our local newspaper highlighted the experiences of a man who had spent nearly thirteen years in state and federal prison. William had returned to his former high school to talk to the students about how his life went wrong. He talked about the dangers of prison and how he had struggled for survival while he was incarcerated. William is a messenger with a purpose of helping young people to avoid the pitfalls of drugs. If William’s story changes the trajectory of one person’s life, he has provided a powerful community service.

After reading the article, I thought about how the voices of experience helped me throughout my life. When Jim and I began our journey through the land of dementia, I needed help to understand how to cope with the challenges of being a caregiver.

I learned the basics of Alzheimer’s from books and browsing the web, but my true guidance came from the voices of experience.

1.   Support Group. My first experience with support group was not a positive one, but I’m glad that I didn’t give up. When I found an active support group with knowledgeable leaders and members who were facing the same challenges I was, it was life changing. We helped each other by being supportive, listening to each person, and sharing our own experiences.

2.   Alzheimer’s Chapter Staff. I contacted the staff at my local Alzheimer’s Association Chapter before Jim had a diagnosis. I participated in caregiver training to help me become a better caregiver. Through the programs and services of the Alzheimer’s Association, I gained confidence as a caregiver. The harsh realities of the disease seemed less intimidating as I concentrated on making the most of a bad situation. I firmly believe that knowledge is power.

3.   Advocacy. I became a state and national advocate for legislation to help caregivers and persons with dementia. Jim’s voice was stilled by aphasia, and I felt it was important for me to be his voice. Alzheimer’s advocates are armed with facts, figures, and supporting documentation, but the most important tool in the advocate’s toolbox, is his or her personal story. Personal experience as a caregiver or a person with dementia is the most memorable part of the meeting.

4.  Alzheimer’s Association Helpline. The Alzheimer’s Association has a 24/7 Helpline. By calling 800-272-3900, you will be connected to specialists and clinicians who offer confidential support and information.

Alzheimer’s can be a lonely disease, but when you find a group that supports you and cares about your well-being, it changes your perspective. I always thought of caregiving as on the job training. Caregivers make mistakes and if you can learn from the mistakes of others, it helps you to avoid making the same ones they did.

Being a caregiver is challenging, but it is the ultimate act of love. The disease can cause distressing changes in your loved one. I learned to love Jim “as is.” I tried not to dwell on the man he had been before dementia, or think about what the future was going to bring.

After Jim passed away, I finally was able to watch some of our old videos. When I saw Jim laughing, singing, or telling corny jokes, I found peace and a sense of joy to hear his voice again. Life had moved full circle, and I thought about all the life experiences Jim and I shared. His was the voice of experience that taught me that love, family, and faith are the cornerstones of life.

 

Copyright © May 2024 by L.S. Fisher

http://earlyonset.blogspot.com

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