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
“Fathers of Daughters”
As Father’s Day approaches, I find myself thinking of many of the fathers I helped to take care of over the years in Memory Care Communities. One man named John comes to mind. He was a tall, quiet and kindly gentleman who had spent his career as a successful federal government attorney. John had a grown daughter who visited him regularly. Every time his daughter Patty would step off the elevator, John would smile, stand up and walk over to give her a hug. Even when he could no longer call her by name, John always recognized her as someone special. I can recall that he would always extend little courtesies to Patty, gently leading her to his regular chair and offering it to her, and always asking her if there was anything she needed. John always took the time, in his limited way, to make sure his daughter was comfortable. Even in the middle and later stages of Alzheimer’s, John was still in his heart a father. When their weekly visits would come to an end, I can always remember John walking Patty back to the elevator with his hand at the small of her back. They would hug, and Patty would step onto the elevator and say, “Bye, daddy.” John would wave and reply, “Thanking you.”
John had a naturally soft-spoken gentlemanly elegance about him, even as his Alzheimer’s progressed. When he attended activities, he would routinely offer his seat to the ladies, acknowledge the other participants, and always make an effort to contribute to the group in some positive way, by either talking himself or by encouraging and praising others for their contributions. Again, I think this had to do with his being a father. John would say things that were vague but often touching and profound. Once he came into a music group, and after one of the songs, he stood up and said with a smile, “This is wow!” His comments and responses often struck me as being very zen. He told me once in the hallway, “Right is here.” That comment definitely gave me pause.
John had been a fine pianist in his past, his daughter telling me of many occasions when John would entertain by playing and singing at family gatherings. I sat John down one day at the electronic keyboard in the main living room. His large hands moved elegantly across the keys, but he was not able to recall any songs or play anything intelligible. He had lost the fine motor skills to produce melodies and chords. This keyboard had the capability of producing a variety of sounds from the keyboard, so I switched the sound from piano to percussion, with each of the piano keys now cuing a sound from a drum set: hi-hat, cymbals, tom toms, tambourine, etc. I then put on a pre-programmed song on the keyboard, I think the first one was “Won’t You Come Home, Bill Bailey”. John played along with the song, contributing sounds of the drum set, staying on the rhythm and ending precisely at the end of the song and lifting his hands up in a tah-dah gesture. I applauded as did the staff members and residents who were in the room at the time. This became a regular, almost daily occurrence. I would lead John to the keyboard, configure it for percussion, play the pre-programmed songs, and John would play along in perfect time. I could tell this gave him satisfaction, that he was still able to entertain a room full of people. John was especially happy when he could play for his daughter during her visits.
John became very ill one afternoon, and we all thought it was a bout of flu. He went to the hospital and we were shocked to learn he had end stage pancreatic cancer. I visited him in the hospital ICU unit shortly before his death. He was obviously in discomfort, but when he saw me, he made an effort to smile. He squeezed my hand and said, “Oh, boy.”
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”
“Positive Post-It Notes”
“88 Keys of Past Memories”