Living with Dementia

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Have you imagined living with dementia?

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It’s not a visualization we often think about, especially if we have never seen or experienced the ravages of what this debilitating disease can do to a mom or dad, an aunt, or dear friend. Most of us don’t know that dementia begins destroying the brain decades before any cognitive decline is ever noticed. But, that it can also be slowed or even prevented by the way we live our lives.

As a registered nurse, I have been fortunate to care for beautiful humans living alongside the disease of dementia. It is difficult to witness, at times frustrating and almost always, heart breaking, for under the dark veil of forgetfulness, disconnection to self and others, inability to shape words, verbal outbreaks, picking the air, or blank stares, there is a loving, funny and wise human.

Recently, I volunteered for an Alzheimer’s Association event called Dementia Live. My role would be “debrief-er”. I was to help people unpack what they would experience during this event. Before I could be of assistance, I too had to experience ‘it’. I could never have imagined what I would discover.

Let me explain. Dementia Live is designed to deprive a willing person of as many senses as possible- especially tactile sensations, vision, hearing and perception- and invite them to experience 5 minutes of what living with dementia might feel like. I was not prepared.

My guide explained that humans living with dementia experience sensory deprivation daily (and in fact smell is often the first sense to be affected). To simulate sensory deprivation, we would be asked to wear gloves, headphones, glasses and no longer speak. “I can do that, no big deal”, I thought. We would then be assigned a list of 5 tasks to complete in a room filled with every day items like, a phone, broom and dust pan, and playing cards. “Got it!” I thought.

The headset blocked out all external noise, replacing it with garbled, loud and distorted sounds, some of them startling enough to make me jump. Next, the glasses. They reminded me of the black sunglasses I’ve see people wear who have just had eye surgery. Except, these made my vision dim, blurry, and pin-holed and deprived me of peripheral vision.  Finally, I donned a pair of oversize, bulky gloves- when I placed my hands together, i noticed I could barely feel my fingers touching. At this point, I felt some apprehension.

I was led to a new guide, I sensed a lady behind me, she was talking very loudly into my right ear, and knew she earnestly wanted me to complete the tasks successfully. I heard her vocal tones and inflection, “1. Blah blah blah TV. 2. Blah sit blah. 3. Blah, blah, sweep, blah. 4. Blah, blah, blah.
I instantly felt a need to please her and ‘do well’ at this test. The trouble was, the list was so garbled I had only understood a couple of words. I felt a desperate need to ask for a clearer explanation, but I had been told not to speak. She led me into the room and walked away.

I instantly felt lost as I slowly stepped around the room. My body inadvertently kept jumping, as It was startled by strange sounds in my ears. I moved slowly forward, knowing I had a list to complete, but what? Tunnel vision led me to a table with puzzle pieces. I love puzzles and it looked like something I should do, so I decided, “this must be on my list”.

I pulled out the chair with my bulky hands, it hit my foot, but I steadied myself to slowly sit. I could see the puzzle shapes, but could barely make out the colors. I remember thinking, “you like puzzles, this should be ok”. But it wasn’t ok.

My fingertips could not feel the puzzle pieces and picking them up was nearly impossible, let alone connect any of them; and I really love putting puzzles together. I focused so hard, knowing the lady was expecting me to complete my list of items, and knew I was spending far too long trying to pick the pieces up. I became immersed at being successful in my task.

I recall looking up at one point and noticed a lady staring at me- a flush of paranoia over came me- ‘what does she want? Why was she looking at me? I was trying my best. Does she see I cannot make any pieces come together? I want to please her. I love puzzles, but why can’t I fit the pieces together? Then she was gone.

It was at this point I saw a figure approaching me straight on. I could kind of see her face- her lips seemed like they were smiling. She gestured to take off my headset and escorted me safely out of the room where I was to debrief my experience.

I felt a wave of relief, glasses and headset off, bulky gloves removed and now able to speak, all my senses had been restored.

But then a wave of sadness overtook me, and I realized that for those living with dementia, it is not as simple as removing glasses or gloves. It is their life. They are living with sensory deprivation every second of their day and night.

Deep empathy was created in my heart for those living with dementia, the person afflicted yes, but also for those caring for and living with a family member or friend.

Prevention of dementia through lifestyle is real. Take a chance- care for your brain because it leads to caring for your whole being, your family, and your community. 

If you’d like to learn more about how to prevent dementia and brain disease through lifestyle strategies, please, send me a message.

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Nicole Vienneau MSN, RN, NC-BC has been a registered nurse for 20+ years, is a board-certified integrative nurse coach, personal trainer, group fitness and yoga instructor, faculty with the International Nurse Coach Association and founder of Blue Monarch Health, PLLC. She specializes in the prevention of brain and heart disease by partnering with clients to uncover their wisdom and enhance their health. Nicole is a passionate Nurse advocate who strives to transform healthcare through nurse coaching. She loves exploring nature, finding solace with her cats and traveling with her awesome husband.

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