The Imperfect Caregiver

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Caregiver Communication Struggles?!
Here’s a Tip. Don’t Be a Marlin

I love spending time with my family! One of our favorite activities is sitting down on the couch, eating some popcorn and enjoying a movie. The top played movie in our house is Pixar’s “Finding Nemo“, which, for the record, I’ve now seen 837 times! 🙂

You would think I get tired of it. You’d be right and wrong.
Every time I watch it, I resonate with Marlin! And not just for the obvious reasons, he’s funny and ends up being heroic. It’s because he reminds me of how I used to be as a caregiver!
Yup, that’s right. I WAS A MARLIN! I WAS AN IMPERFECT CAREGIVER!
Still confused? I’ll explain.

In the film, Marlin is a single dad to his son, Nemo. Nemo is born with a handicap to his fin. Nemo ends up being captured by divers, and it’s up to Marlin to rescue his son. Along the way, the only fish to befriend Marlin is Dory, a fish that suffers from short-term memory loss.
Marlin, like many of us caregivers, struggles with “being in control”. He’s used to doing things his way, or what he would consider “normal”. Throughout the journey to find his son, he is often met with stressful situations that cause his emotions to come unraveled.

During these moments, he reacts out of a fear of loss of control saying things like, “Look, you’re really cute, but I can’t understand what you’re saying”, or my favorite “You think you can do these things, but you just can’t, Nemo!” It’s not until he learns to trust and believe in the abilities of his friends and family around him (disabilities included), that he finally let’s go, and enjoys the journey.

I may be the only person on the planet, that while watching Finding Nemo, each and every time, look at it and see my life as an Alzheimer’s and dementia caregiver to my grandparents, and as a mother to a daughter who has Autism.

In particular, I recall trying to control communication. You see, I, like Marlin, was used to my style of communication, a “typical” verbal communication cycle. Communication is usually a shared responsibility. A normal communication cycle involves someone speaking (or sending information), the other person(s) hearing and processing what is being said, and then an response is given.

However, in dealing with persons living with Alzheimer’s or related dementia, this verbal communication is often difficult, if not impossible (and is sometimes difficult for persons living with Autism as well). Alzheimer’s disease gradually diminishes a persons ability to communicate.

Changes to communication include using familiar words repeatedly, inventing new words to describe familiar objects, forgetting what was being said, speaking less often, to name a few. Read more from the Alzheimer’s Association.

I didn’t understand all of this at the time. I certainly didn’t know any other techniques to try. My lack of education and knowledge about how to communicate better with persons living with dementia, only led to mounting frustration which turned into depression, lack of motivation, in short, burnout (and this was with my grandparents whom I LOVED dearly and affectionately!)
I had to learn how to live in the person with dementia’s world, not have them try to live in mine!

My biggest breakthrough came in adjusting my style of communicating. I learned to speak calmly, get at their eye level, speak in short sentences (focusing on one idea at a time), only ask one question at a time, never argue (unless safety was a risk), and reduce the thinking to get the message across to name a few tips I learned.

The later tip (reduce the thinking), is what led to my trying visual tools for communication. I wasn’t used to visual communication; I’ve always been the chatty type. Verbal worked for me. But clearly, it wasn’t going to continue that way while caring for my grandparents, who had Alzheimer’s disease.

I learned that in persons living with Alzheimer’s and dementia visual communication is retained easier. Why? Because, visual processing is less taxing on the brain, and we need to “reduce the thinking to get the message across”.

Also, visual communication usually involves reading of prompt or cue words, and persons living with dementia can still read. Yes, its’ true! Why? Because reading is a automatic habit, known as automaticity. So, if our loved one with dementia was literate as a child, they should still be able to read well into the disease process.

Understanding these concepts helped me to be a better caregiver. It allowed me to focus on what can be done, versus hat can’t; working with what you have not dwelling on what is lost. It’s positive, person-centered care! How awesome!

I was able to create many illustrations for the use of communicating easier with persons living with Alzheimer’s and dementia, known as Caregiver Cards. Caregiver Cards are visual communication. It is a series of 155 cue cards that caregivers use to help communicate, orient, cue or reduce anxiety and related behaviors in persons living with Alzheimer’s, related dementia, or other memory or speech disorders. Caregiver Cards address emotions and behaviors, activities of daily living, instrumental activities of daily living, commands, prompts, people, places and events.

I have used Caregiver Cards many times to help bridge that gap in communication, to help work with their abilities and be in their world.

One fond example I like to share is with my interacting with a wonderful woman who has regressed, in her Alzheimer’s, to her native, non-English tongue. She is sitting next to me chatting in Portuguese, and starting to get escalated because I 1. don’t know Portuguese, and 2. am not responding immediately to her. I paid attention to her body language and understood she was interested in my face area. I went through my set of Caregiver Cards, eventually coming to the “hearing aid” illustration. I directed her eyes and attention to the illustrated card and said, “You see my hearing aids?” (I wear two hearing aids). She immediately responded IN ENGLISH, “Yes! Hearing aids”, promptly wrote out the word hearing aid on paper, and then went right back to speaking Portuguese.

But, she was calmer!! We made a connection. She understood that I understood her! It was amazing!
It’s all of these experiences that have helped shape me into the person I am today. I am a dementia champion! I am no longer the scared and controlling Marlin! I hope the same applies to you.

Feel free to contact Barbara Worthington, Founder and Owener of Caregiver Cards, about questions you may have regarding caring for persons living with dementia or Alzheimer’s. If Caregiver Cards seems like a good tool for your caregiving needs, please visit and order at http://www.caregivercards.biz or find them on Amazon.