Imagine Living with Dementia…
Living with dementia or Alzheimer’s disease is likely something you haven’t imagined often. Like most people, you may not want to invite those thoughts, visions or possibilities into your mind, especially if you’ve seen or experienced the ravages of what living with dementia can do to a mom or dad, an aunt, or a dear friend and their family.
I Have Cared for Humans Living Alongside Dementia
As a Registered Nurse, I have been fortunate to care for beautiful humans living alongside dementia. To say caring for them is difficult doesn’t do it justice. It is difficult, at times frustrating and almost always heart breaking, for under the dark veil of disconnection to self and others, inability to shape words, forgetfulness, verbal outbreaks, or blank stares, there is a loving, funny and wise human.
A human who was once filled with joy, curiosity, love of life, wisdom, intention, honesty, love and more.
But what about living with dementia?
Dementia Destroys Brains Decades Before Issues Are Noticed
Most of us don’t know that dementia begins destroying the brain decades before any cognitive decline is ever noticed.
You are born with about one billion brain cells, and every day about 85 000 of your brain cells are destroyed just through normal activity, living your life and the aging process.
Now, imagine (and I know it’s so hard to) if you develop a degenerative brain disease like Alzheimer’s disease or another associated dementia that kills your precious cells beyond the normal destruction of ~85 000 cells a day.
Yes. With a neurodegenerative disease brain cells can be destroyed faster, and faster until memory loss, trouble speaking, walking, or sleeping creeps in and then other declines begin to snowball, creating a slow fading away of the person you love. Or, you notice these changes in yourself.
There is Hope in Prevention
There is hope in prevention. The things you do (or don’t do) in your daily habits and behaviors like, what you eat, or how much you move, or your stress levels, or if quit smoking, or control your blood pressure or blood sugars, or if you live(d) in an environment where you are exposed to toxins, can either increase or decrease your chances of developing a debilitating life of living with dementia.
Helping you learn about and then how to activate positive lifestyle habits and behaviors is what I devote my work to, with the BUILD Your Health System.
Why did I ask you to imagine dementia?
Imagining dementia is a small thing you can do to begin understanding what it might be like to live with brain decline. And now, I’d like to share a story of what I learned about what it may be like to live with dementia.
Dementia Live
I support organizations who are also bringing awareness to dementia and its prevention. One organization I volunteer for is the Alzheimer’s Association. The event was called Dementia Live. My volunteer role was a “debrief-er”, a listener of stories from participants after they experienced Dementia Live. Before I could be of assistance, I too had to experience ‘it’.
I never imagined the depth of discovery I would learn about living with dementia.
Designed to Deprive One of Many Senses
Dementia Live is designed to deprive a willing person of as many senses as possible. The senses removed are, tactile, vision, hearing and perception and participants are invited to experience 5 minutes of what living with dementia might feel like.
I was not prepared.
Sensory Deprivation Daily
The Dementia Live guide explained that fellow humans living with dementia experience sensory deprivation daily (interestingly smell is often a first sense to be affected).
To simulate sensory deprivation, we were asked to wear ill-fitting gloves, noise-canceling headphones, thick, black glasses and no longer use our voice to communicate.
No Big Deal…
“I can do this, no big deal”, I thought. We would be assigned a list of 5 tasks to complete in a small room filled with every day items; things like, a phone, playing cards, broom and dust pan. “I got this”, I thought.
Nicole at Dementia Live
The headset blocked out all external noise, replacing it with garbled, loud, distorted sounds, some, startling enough to make my body jump.
Next, the glasses. They reminded me of the black sunglasses people wear after eye surgery, except these made my vision dim, blurry and pin-holed and blocked my peripheral vision. Finally, I donned a pair of oversize, bulky gloves. I placed my hands together, and could barely feel my fingers touching. At this point, I felt my heart beat pick up, and my throat got a little dry.
Blah, Blah, Blah, TV
I sensed a lady behind me, she yelled earnestly over my right ear-set, maybe these were my list of to-dos? I recall trying to look at her with my peripheral vision, which was blocked- hoping I could read her lips. the tasks I was to complete. I heard her vocal tones and inflection, “Blah, blah, blah, TV. Blah, sit, blah. Blah, blah, sweep, blah. Blah, blah, blah.”
I Felt a Desperate Need
I felt a desperate need to please her, and do well for her, but her voice was so garbled, and I only understood a couple of words. I wanted to ask for clarification, but I had been told not to speak. She led me into the room and walked away.
I Felt Lost
I instantly felt lost as I slowly stepped into the room. My body inadvertently kept jumping, startled by the abrupt and strange sounds through my head set. I slowly shuffled forward, knowing I had a list to complete, but what was it?
Tunnel vision led me to a table with puzzle pieces. Normally I love puzzles and it looked like something I should do, so I decided, “this must be on my list”.
I could barely make out the colors
I pulled out the chair with my bulky hands, it hit my foot, and 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 I 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 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 fully immersed at trying to piece together two pieces. I’m not sure how long I sat there.
A Flush of Paranoia
I looked up at one point and saw a lady staring at me- a flush of paranoia over came me! What does she want? Why is she watching me? Doesn’t she see that I am 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?
And then, she was gone.
Then a figure approached me straight on. I could barely see the shape of her face- it was kind of wavy and faint- her lips appeared to be 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.
A Wave of Sadness
Then, a wave of sadness overtook me. As a Registered Nurse, I have cared for many patients living with dementia, but until Dementia Live, I never, ever imagined really living, as they do, every second of the day.
When you live with dementia, you can’t remove the dark glasses that deplete your vision, or shed the thick gloves that affect your touch. You cannot rid yourself of the startling sounds in your head, and you try and try, but you just can’t seem to complete that one task (or a list of 5) that someone really wants you to complete, no matter how hard you try.
Profound Empathy
A deeper, more profound empathy was created in my heart for those living with dementia, the person afflicted yes, and also for those caring for and living with a family member or friend.
A Hopeful Reality
Prevention of dementia through lifestyle habits and behaviors is a hopeful reality.
Take a chance! Protect your brain because it leads to caring for your whole being, your family, and your community.
If you feel it in your heart to imagine a life without dementia, and are ready to learn more about how to BUILD Your Health System to keep you filled with vitality, please send me a message.
You are loved,
Nicole
NICOLE VIENNEAU, MSN, RN, NC-BC
~Health Protection Expert & ‘Head’ Motivator!
Nicole knows how to inspire you with habits and behaviors that keep you healthy and whole. She understands the science to support your efforts and makes learning and action fun!
Nicole’s Memere (grandma in French) lived with dementia after 13 strokes slowly stole her fire, her wit and her life. Through Memere, Nicole learned the gift of humor and creative ways of communicating using unsaid words and messages that are difficult to express. Nicole uses these skills to uncover purpose, vitality and health within her clients through the Build Your Health System at Blue Monarch Health, PLLC.
Nicole achieved a Master’s in Nursing Science from the University of Arizona, and a board certification in Integrative Nurse Coaching from the American Holistic Nurses Credentialing Corporation. She is a personal trainer, yoga teacher and group fitness instructor, and Senior Faculty with the Integrative Nurse Coach Academy, and enjoys healing in nature while hiking the Pacific Northwest trails with her husband or lounging in the sun with her cat babies. Email Nicole
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