Married in 1953, Carolyn (Nesto) Haynali and her husband Chuck were the picture of a normal family. They raised two children. They went on to become the grandparents of three grandchildren, and later great-grandparents to three great grandchildren. Chuck was a veteran, a father, a provider, and a loving husband. Their lives, by all accounts, were quite normal until Chuck was diagnosed with Alzheimer’s disease.
Now, Carolyn — a mother, a wife, a grandmother, a great grandmother, and a caregiver — is a published author, a poet, and the founder of the Caregiver’s Army Organization, an Internet support group for Alzheimer’s caregivers. Her book, “I Was Once Like You,” gives readers a glimpse into living with Alzheimer’s and the impact it has on the caregiver.
“There were a lot of emotions,” Haynali says about her reaction to Chuck’s diagnosis. “I told myself the doctor’s didn’t know what they were talking about. I didn’t believe this could be true. This is a man that took care of me for many hears; he was strong and knew how to fix anything. I depended on him. Now things will change. How will I get through this? It was like a nightmare and I couldn’t wake up. Then I had to come to terms with it and take it one day at a time. With God’s help we will make it through.”
Haynali, who lives in West Chester, OH, says she really didn’t know how to handle the disease and turned to the Internet for support groups, where there were others like her, going through the same thing.
At first, says Haynali, her friends were not there for her. They stayed away — no phone calls or visits.
“It took them about two years before they started to come back. Then I found out about the Alzheimer’s Organization and would go to meetings every month to get more information. I needed help in the evenings and as the disease progressed it got more difficult for me to take care of him and my health began to go downhill. Caregiving is a 24/7 task with no rest.”
Haynali says she had nights that were long and lonely.
“The disease is a robber of memories,” says Haynali. “The man I loved could not remember me, or where he was. He was always searching for his wife and I was right in front of him. This was very emotionally draining.”
But those “draining” experiences ultimately led Haynali to take a proactive role in helping others confront and deal with Alzheimer’s disease. When one of the women in her Alzheimer’s support group asked her to take over, Haynali hesitated at first.
“I didn’t know anything about handling a group, or being on the Internet to answer questions,” recalls Haynali. “I was the one that needed help. But one day I felt in my spirit to call the group “Caregivers Army” because were were an army band together by fighting for a cause to find a cure for this terrible disease.”
Through her touching poetry and book, Haynali assures others that they are not alone, and encourages them to educate themselves about the disease and join the effort to find a cure. She cared for Chuck for ten years — enduring daily stress and isolation — and then launched Caregivers Army Organization to create a network for caregivers to prepare them for what lay ahead and provide resources to help them on their journey. She coordinated a petition for more research to find a cure for Alzheimer’s disease, and on September 21, 2000, she presented more than 20,500 signatures to the Congressional Alzheimer’s Task Force in Washington, D.C.
When Haynali spoke to the Task Force she read her “Alzhemier’s Patient’s Prayer” to them. The prayer was published in Haynali’s book of poetry, “Poetry From The Heart By An Alzhemier’s Caregiver,” which was compiled from a daily journal she kept as she struggled through the harship of watching the toll Alzhemier’s took on Chuck. In the “Alzheimer Patient’s Prayer,” she touchingly writes: “Pray for me, I was once like you/Be kind and loving to me, that’s how I would/have treated you. Remember I was once someone’s parent or spouse, I had a life and dream for a future.”
Haynali has received the Ohio Senior Citizens Hall of Fame Award (2006), and the Ohio Caregiver of the Year Award (2006). She is a champion in the search for a cure to Alzheimer’s and speaks to groups, families, and loved ones to provide comfort and encouragement.
“I understand what they are going through,” says Haynali. “The pain is still very fresh in my heart and memory. I try to remind them to be supportive of their loved one, have patience, hug them, and thell them you love them. Also, you must have time for yourself so you can be a better caregiver. Remember, they didn’t ask for this. It can happen to anyone at anytime.”
Haynali will sign her book “I Was Once Like You,” on Thursday, March 1, from 9 to 11 am at the Barrington of West Chester, at Carespring community, at 7222 Heritagespring Drive, West Chester, Ohio.
“I Was Once Like You,” is published by Author House.
For more information, call (513) 777-4457.