Casual Fridays: Shining light on Alzheimer’s and Dementia – “Distinguishable Gentlemen”

Intimate stories about dementia

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. I will post a new story every Friday.

-Carlos Barrios, Founder of Endear for Alzheimer’s

 

“Distinguishable Gentlemen”

Different personalities with dementia

When I first started working as a nurse’s assistant in Colorado, I was assigned to a room with two male roommates who couldn’t have been more different. On the right side of the room was Ray, a quiet, respectful gentle man who had been blind for most of his life. On the left side of the room was Bud, who was secured with belts to his hospital bed. Bud had a long history of alcohol abuse and had overdosed a few years before on some kind of prescription medication which caused permanent brain damage. Bud never stopped moving, all four limbs in different directions. He would bend his head down to where his restrained hand could scratch his head. He would compulsively scratch until his scalp was bloody. Bud could only say his name and not much else, but Ray, especially in the mornings, was very talkative.

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I remember when I would get Ray up in the morning (after changing Bud’s diaper), I would gently swing Ray’s legs out to the floor and sit him up in his bed. Without fail, Bud would ask me, “Will you rub my back.” I would give his back a vigorous rub and he would sway his shoulders back and forth and say thank you. I remember once, I led Ray into his bathroom and sat him down on the toilet. As I was waiting for him to finish, I was out in the room talking to Bud, who was so impaired that if I put my face directly in front of his, he would not make eye contact, not realizing that I was a person.

Bud’s face was constantly changing expressions, from a grimace to a smile to a wide open mouth to tightly pursed lips. His eyes were glazed and unfocussed. Because he constantly moved all his limbs, even when he was asleep, he burned a lot of calories and was very thin, but with good muscle tone. When I was with Bud, I couldn’t help but think that here was a soul in Purgatory.

It was sad to see someone in that kind of shape, especially considering that his condition was self-induced. I returned to the bathroom and Ray asked for toilet paper. I gave him a wad, and he shook his head and said, “My God, that’s enough for six elephants.” It was interesting to take care of these two men in the same room, because their respective energies were so very different. Ray was calm and kind and had that quintessential grandfather spirit. Bud’s body was in the room, but whatever made him an individual personality was long gone. I found myself very fond of both of them, and as I remember, they were the first people I would get up in the morning when I worked on this particular hall.

Catch up on passed episodes of Casual Fridays. Here are some you may have missed:
“Coffee Break”
“Elvis’ 65th Birthday”
“The Silver Key Club”
“Pinto!”
“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”
“Fathers of Daughters”

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2 Responses to “Casual Fridays: Shining light on Alzheimer’s and Dementia – “Distinguishable Gentlemen””

  1. Carol Wright says:

    I have been sole caregiver for mom for over ten years, and even though she has been in a nursing home for a year…not my choice…I still consider myself her primary caregiver.

    It was not until I had daily exposure with those in the dementia ward that I realize how EASY it was to love those who seemingly had no “person” left. I had no idea what they did in the past. Some could no longer speak or even follow me with their eyes. One woman kept blurting “die die die die” in a singsongy voice…and eventually I could talk to her and sing with her…and indeed she meant that word. And the themesong to “Barney” was her lifeline out. “I love you and you love me, and we are all a fam-i-ly…” i looked up the lyrics and found the YouTube video of it Barney singing the song…

    When thinking back to how people who just BEGIN to lose their memory are abandoned by friends and family…only to discover deeper riches when we experience these little threads of life are a profound connection to the soul.

    • admin says:

      Carol,

      I could not agree more with the words that you wrote. While people with dementia lose the personality that they once had, they develop a new persona. Sometimes the changes can be extreme, and there is often some deep seeded angst, however, as you mentioned, if you can come to a point of acceptance there is still a world of positive interaction that can take place.

      Thank you for your comment. It is as if you explained my thoughts better than I can myself.

      Carlos Barrios
      Founder of Endear For Alzheimer’s

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