“Imagine being in your adult body, trying to talk to your family and unable to find the words to explain. Imagine walking into a room and being unable to identify your surroundings. Imagine people smiling warmly at you as they greet you by name and you have no idea who they are. This is the sad reality of Alzheimer’s disease.”
The Reality of Alzheimer’s
We asked people on the Alzheimer’s Association, Greater Illinois Chapter Facebook page to share their personal experience with Alzheimer’s disease. Story submitted by Andrea L. Pye.
When I was younger I didn’t realize how lucky I was to have both my grandparents and great-grandparents in my life. When I was in elementary school and we celebrated Grandparents Day, I realized my friends didn’t have great-grandparents to love and spend time with them. Although Nannie and Papa were my great-grandparents, they never seemed old to me. Papa would laugh and tease my brother and me. He was always laughing and being silly. Nannie would sit on the floor and play games with us, bake cookies and tell us stories of when she was young.
For as long as I can remember, I loved visiting my Papa and Nannie. We always had fun when they came. They visited our house regularly when we lived in Chicago, Atlanta and closer to them in Missouri. We often visited their house too. They lived in the country and it was fun to drive out to their house. There were always a lot of people at their home; my grandparents, aunt, uncle, cousins and lots of family friends. My Papa and Nannie loved family gatherings and always wanted everyone there for every holiday, summer barbecues and vacation trips. One of my favorite memories was a trip to Silver Dollar City for my birthday. Papa bought me a huge stuffed panda bear and carried it around all day for me. I still have it today and it’s very special to me.
One day, when we were visiting, something happened that made me realize that Papa wasn’t well. He kept telling my grandmother he wanted to go home. He was very insistent and his voice grew louder and louder. This was the only place he had lived since I was a baby; I didn’t understand what he meant. My grandmother talked to him in a quiet voice, asking him to describe where he wanted to go. Could he give her directions so she could take him? My mother talked about events she shared with him in his house and how much she loved his home. She recalled her getting off the school bus with her girlfriends here. Then she laughed as she remembered his teaching her how to change the oil in her car, check the tire pressure and change a flat tire. She talked about the first time she brought me to his house. He simply didn’t remember.
As these episodes increased, my family had to monitor his activities more closely. He always enjoyed being outdoors, going for walks in the woods, driving over country roads. He didn’t understand he couldn’t do these things any longer on his own or without help. He thought our family wasn’t treating him fairly and would get very angry. Then after he would get upset, a little later he would become calmer, more in control. He wasn’t the same fun-loving man we all knew. He didn’t talk as much with us. He was quieter and withdrawn. In his lucid moments, I think he realized he had problems. I don’t know if he ever understood the cause.
Finally, my mom told us that my Papa was sick. The doctors had diagnosed him with Alzheimer’s disease. She said the disease might affect his actions. He may say things we don’t understand and seem angry. He may not always recognize us or remember things. We would need to be understanding and patient and remember he doesn’t have control over what is happening to him. It was most important that we remember how much he loves us and we need to show him how much we love him too.
As the Alzheimer’s disease progressed it not only changed my Papa, but also had a big impact on my family. As his health declined, all our events and activities had to be scheduled at his home since he wasn’t able to travel. He needed to stay where he felt safe. He became too agitated in strange environments. If he did go anywhere, the time was limited and needed constant supervision. We visited him more often, my mom called at least once a day to check on him and my Nannie. It was important that we constantly tell him how much he is loved. We took every opportunity to talk to him and hug him.
As time went on Papa became more distant and quiet. He would sit in his chair or lay in bed, staring at the ceiling. He had long conversations with people he saw on the ceiling and he wanted us to talk to them too. Many times he told us he was talking with family members or friends who had died. He was adamant they were in the room with us. He especially liked to talk to this beautiful red-haired girl. This brought a huge smile to his face and he loved that girl. One day as my Nannie sat by his bed he asked her to get his wife for him. My Nannie was so hurt that after sixty years of marriage he didn’t remember her. She knew he couldn’t help it, so she continued talking with him about the red-haired girl. She realized the beautiful red-haired girl he talked with regularly, was my Nannie as he remembered her when they were young. He may not always recognize her now, but he always remembered how much in love they were.
My Papa’s decline started slowly and took several years. It was emotionally and physically difficult on everyone. My family sought information from many resources; one contact leading the way to another. This was a learning process. It’s why I think it important that our medical doctors and nurses help families with support associations. It doesn’t matter how much service is available if it can’t be readily available. We must continue research help find the cause for Alzheimer’s disease, develop new drugs and treatments.
Imagine being in your adult body, trying to talk to your family and unable to find the words to explain. Imagine walking into a room and being unable to identify your surroundings. Imagine people smiling warmly at you as they greet you by name and you have no idea who they are. This is the sad reality of Alzheimer’s disease.
As I begin my college career majoring in nursing at University of Alabama, I will always keep the memory of my Papa in my mind. I learned that Alzheimer’s disease, and other illnesses, can be so difficult on the family members. I made a promise to myself to always help the families as well as my patients. They need love, caring and support too. My family was lucky to have such support within our family and friends, but that’s not always the case. I hope I am able to fill that spot for a family if it’s needed.
My Papa was one of the greatest people I will ever know. He was always there to help family and friends in need. He led by example and I know he will be proud of me for pursuing a career in nursing and helping others just like he did.