A Glass Full Vision of Living with Dementia

If you could paint a picture of a dementia friendly world, what would it look like? My mind conjures up vibrant images of compassionate people engaged in daily activities which encourage abilities, dispel assumptions, and promote communication — at every stage of living with dementia. Then, imagine the board of directors to orchestrate such a vision being composed entirely of those diagnosed and their caregivers. I experienced all that and more last night.

With the clearest of insight, Richard Taylor, Ph.D. shared a “glass full” image of a dementia friendly world. Alongside two other guests, Richard joined us for the 2nd time on Because Hope Matters Radio to culminate World Alzheimer’s Month. Living with Alzheimer’s and other types of dementia is oftentimes daunting, difficult and painful. Yet, it is also inspiring, engaging and hopeful when one takes the time to see the “glass full — rather than half empty or half-full,” according to Richard Taylor.

As millions of families know, including my own, coping with Alzheimer’s and other forms of dementia doesn’t end with the turning a calendar page. It’s a 24/7 journey that could be considerably eased if understanding were peaked and stigmas erased. Last night, my co-host, Rob Harris and I focused on hospitalizations of dementia patients and those caring for them.  We leaned on a team of guest experts to share communication breakdowns, care measures and safeguards, and lessons learned while living with dementia.  The surprising element was that two of our panel experts are confronting Alzheimer’s themselves. Richard Taylor, a retired psychologist and author of Alzheimer’s From the Inside Out, was diagnosed nearly a decade ago. Michael Ellenbogen was also diagnosed 10 years ago, with Young Onset Alzheimer’s Disease (referred to as YOAD).  While they are both battling the terrible disease, they are also battling insensitive assumptions that paint a hopelessly evolving, lifeless picture for those living with dementia.

Through The Purple Angel Project and his upcoming book, From the Corner Office to Alzheimer’s, Michael is pioneering advocacy to educate and eradicate the stigmas that diminish a dementia patient’s place in society, and ultimately their sense of purpose. Richard Taylor’s writing first sparked my attention while I was co-writing When Your Grandma Forgets, almost two years ago. His tender-hearted endorsement of my Little Pink Book about Alzheimer’s has merged our paths in ways that I didn’t anticipate. Prior to inviting Richard as a radio guest, I’d never spoken to him personally other than through email. His candid brilliance and contagious passion was magnified even greater by our guests, Michael Ellenbogen and Rae-Lynn Ziegler.

Perhaps, the most stunning aspect of our on-air discussion was that none of it was complicated; the “Golden Rules,” “Purple Angel,” and “Secrets for Successful Communication” didn’t contain an ounce of rocket science. Each contained compassionately simple ingredients for those willing to opt for a dementia friendly world — just click HERE to listen to the episode.  As Rob and I bid a grateful farewell to each of our radio guests, I felt compelled to call my mother. Mom and I talked, listened, laughed, and connected for 20 minutes — despite her battle with Alzheimer’s. Then, with a glass full of hope and inspiration I turned to writing this blog, excited about sharing more of Rae-Lynn Ziegler’s precious insights.

Author, Rae-Lynn Ziegler, is an occupational therapist, and “out-of-the box” creative person who loves to sing, do yoga, swim, and be with family and friends. She is a wife and proud mother of two grown children. Rae-Lynn is currently enrolled in culinary school for the “joy-of-it”! Her book, Let’s Look Together, is an interactive picture book for people with Alzheimer’s and other forms of Memory Loss.

A whimsical little fact about her: Rae-Lynn feels like she can fly when she sings!

Now — onto her expert inspiration!

Could it be that my own mother was alive and living with dementia already eight years ago?  The years while she was living with the disease, numbered somewhere from 8 to 10 and contained heartbreaking times of witnessing the regression of “old mom” and the birthing of “new mom”.

Visiting ‘new mom’ became a quest for maintaining emotional levity and balance of her needs and mine. A question that the family caregiver often asks, “What do ‘we’ do to walk (and grieve) the walk with our loved one who is being affected by such a disease as this?”

 The most important thing to recall is that inherently a person needs to feel connected to the world around them. Connected socially to humans and animals alike and to receive sensory stimulation through our own body senses (smell, taste, sight, hearing, touch) and include sensing total body movement, and the individual feeling of motion in our fingers, arms, legs, and toes!

Our brain needs to be nourished through our senses in order to remain alert, engaged and responsive. The brain then integrates or brings together sensory information for meaningful participation at any given moment.  The ability to take in sensory stimuli and use it translates to being able to do even the most simple of things like feeding oneself, dressing, or going to the bathroom as unassisted as possible.

Our body “sensing” gives back the reward of feeling a sense of accomplishment; being able to participate in the world in the ways each of us has always known it.

The old saying of “use it, or lose it!” is so true!

Although the brain diminishes with this disease, it doesn’t mean we should stop quality moments of all kinds for our loved one.

As each of us age, our bodies will continue to want to maintain that inherent need for experiencing integrity of self. Honoring individual dignity and providing unconditional love comes from being able to participate actively in the world around us (even if your loved one can’t say it!).

 One of the tools I used that became my ‘lifesaver” was the book, Let’s Look Together.  The evocative and non-familial photographs of the universally loved subject of children placed uniquely on each page, stimulated memory cells for my mother, so that she automatically and delightfully would say something that allowed us to chat with each other.  There was never an attitude of eliciting a “right of wrong” reply.  This activity provided a feeling of mastery by simply allowing us to sit side-by-side together keeping the connections in the body alive! When no verbal response is forthcoming, elicit engagement by asking, “How many? Let’s count. What color? A favorite? Let’s smell the rose from the garden!”

 At the deepest level, the one you are caring for needs to feel connected to you, and the world around them — to feel your essence of love.

Click HERE to visit Rae-Lynn Ziegler at her website.

 

2 thoughts on “A Glass Full Vision of Living with Dementia”

  1. Thank you Maryann and Rae-Lynn for your thoughts. You have captured my thoughts exactly. My mother currently has been struggling for probably six years with dementia caused by both Alzheimer’s and vascular disease. Yes, all of her senses are diminishing with time and it is tragic to watch. As an example, she no longer knows when to stop eating and cannot interpret what she is eating except it be by the quality of either good or bad tasting. At one time she was so cognitive of every bite of food and her lifestyle was one where she advocated to her family and practiced and maintained a rigor of healthy eating. In my thinking her life can be best described as one of the original practioners of a raw, organic vegetarian style of eating. However, she no longer understands the concept. Her legacy and sense of knowing what and how to eat has been passed onto her children who now hold the memories of her past life. Her legacy of right use of the “senses” has been passed onto her succeeding generations. In time and by God’s grace the reality of earth will be exchanged to the reality of heaven and she will be renewed and will regain all of her “senses”. This is the prayer and the hope that matters for which we all hold near and dear to our hearts. Thanks. Bill

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