Casual Fridays are a series of real stories about people with Alzheimer’s and dementia. They are positive, slightly sad but enlightening. I want to show that you can still have intimate personal connections with people with Alzheimer’s and dementia. Additionally, I hope that readers can relate them to their own experiences. While some of these stories may be funny my intent is not to make fun of people with Alzheimer’s. I intend to change the way that people perceive the disease by showing some positive aspects to aid in accepting Alzheimer’s for what it is.
It has been incredibly important for me to understand my personal relationship with Alzheimer’s. My hope is that these stories can help those additionally affected by Alzheimer’s disease come to terms with how it effects their lives.
A colleague of mine worked in the eldercare industry for seventeen years. He worked in nursing homes and residential communities as a Nursing Assistant, an Activity Coordinator, and a Life Enrichment Director. He currently works with a non-profit organization that assists people with dementia and Alzheimer’s. He told me these stories and shares my views on how important they are. He asked me to share them with you. Please enjoy, I will post a new story every Friday.
-Carlos Barrios, Founder of Endear for Alzheimer’s
“Positive Post-It Notes”
Hardy was tall, slim, soft-spoken, and almost always wore a long-sleeve flannel shirt. He came to live in the Alzheimer’s community where I worked around 2002. Hardy was a life-long nature lover, and had spent his work years with the United States Forest Service, for many years as a forester, and ended his career in upper administration. He was well respected in his field, and his son told me that there is a Forest Service building somewhere in the Washington D.C. area bearing his name.
When I first met Hardy, he was pretty high functioning. He was walking, enjoyed conversing and writing. He kept a yellow Post It note pad in his shirt pocket with a pen and would write notes to himself throughout the day. When I would visit him in his room, there were sticky notes lining the walls and on his bathroom mirror, giving him reminders to brush his teeth, read the newspaper, call his family, etc. Hardy was compensating for his loss of short-term memory by writing voluminous reminders on sticky notes. Once, I found a Post It note on the floor that Hardy had written. It read:
“Bowel Movmen no. 1 I have ever had! This hapend Wed today despite of many pils
Dad Please show me what to do.
Dad I love you.”
When Hardy first came to live with us, he received the newspaper daily. He would write notes on the newspaper in black ballpoint pen, and then use yellow, blue, and pink highlighters on what he had written. Next to the weekly forecast, he would always write something like, “Not a drip of rain this week…Clouds come and go.” He would also circle certain words in the paper and put quotation marks around certain headlines. One newspaper had a front-page story about logging with photos. He wrote, with arrows pointing to the freshly cut logs:
“Forest Service…I am excited on Forest trees…Cut the wood and stop the fire!!”
Hardy’s family brought raspberry plants from his garden to our community, which we planted in half barrels on the first floor patio next to the raised bed vegetable garden. Hardy and I would go down to the patio in the spring and summer months. I would set him up with the hose and Hardy really enjoyed watering all the plants. I can remember him flipping the hose to get the kinks out so the water would flow.
He really enjoyed music as well. Hardy and I would sit in his room with his Casio electronic keyboard, and play together. I would follow his whimsical lead, and the result sounded often like dissonant avant-garde 20th century classical music a la Schoenberg or Webern, but it was a way to connect and we both enjoyed communicating musically with each other.
Hardy’s way of communicating was often bordering on the mystic. He would answer questions very calmly and serenely after a moment of reflection.
Hardy had a gentle and positive spirit, and although he became frustrated at times, he was usually calm and smiling and full of wonder. I found him to be a very soothing presence. Once, I remember bringing a dog onto the floor where he lived. His eyes lit up and he pointed to the dog and said, “And of course there’s some fun.” Once I held up a mirror to his face and asked him what he saw. Hardy gazed at his reflection and said after thinking for a moment, “Quite well.” Once I took him outside in his wheelchair into a bright cloudless morning. He smiled and sang, “Shunsine!”
After two years or so, Hardy began to decline and he eventually stopped walking. I would still take him down to the garden in his wheelchair where he would continue to water the plants. He began sleeping more and declined steadily over a period of weeks. Shortly before he died, I was sitting with Hardy in his room as he lay in his bed half asleep one afternoon. As I got up to leave I told him I’d come back later. He replied very softly, “I love you all.”
Catch up on passed episodes of Casual Fridays. Here are some you may have missed:
“Elvis’ 65th Birthday”
“The Silver Key Club”
“Laughing and Singing”
“The Task Master”
“Our 3 Floors of Memory”
“Need to Get Back to Clay City, Iowa”
“Toilet Talk Time”
“Fleas and a Feather Float Together”
“Once a Politician, Always a Politician”
“88 Keys of Past Memories”
“Fathers of Daughters”