Tag Archives: Still Alice

“Can You Hear Me Now?” by Carole Mullikan

We are honoured to have an article written by dementia advocate and pioneer, Carole Mullikan. Thank you Carole, for sharing your story, and for living so well since her diagnosis in 1995, by role modelling to us all by focusing on what she can still do, and that for many of us, it is possible.

Can You Hear Me Now?

“Not so long ago a man in spectacles paced everywhere testing his phone in a Verizon commercial.

“Can you hear me now? Can you hear me now? Can you hear me now?”

As a first-year teacher, that was a question I often asked myself when in front of a noisy bunch of teenagers. Over time, I learned how to quiet and focus teenagers in a classroom. Yet sometimes I still needed to ask the very back row,

“Can you hear me now?”

When I began making luncheon presentations in ballrooms at state teachers’ conferences, the question arose again. Sometimes microphones are forgotten. Sometimes they malfunction, necessitating greater lung power. Other times they must be tested and adjusted.

“Can you hear me now?”

At one national conference, the microphone was working just fine, but as I took the podium, I glanced up, seeing the massive, multi-layered crystal chandelier above. Good grief! I thought to myself, what could I possibly have to say that was worthy of such splendor? But being a seasoned speaker, I persisted.

These days, I no longer speak in classrooms or at conferences. Most often I speak to just one or a few individuals. That should seem easy, but having been diagnosed with dementia, “Can you hear me now?” is still an issue. The stigma attached to dementia causes others to listen through a perceptual filter telling them the person with dementia is often confused. What he says may be wrong. She may not have her facts straight. He might be dwelling in the past or experiencing delusions. What a person with dementia says cannot be trusted. Even when I am certain of my facts and speak with authority, I question that they can hear me through the diagnosis of dementia. Too often I fall silent.

Hear me now, please!

Being automatically deprived of my credibility hurts!

Copyright: Carole Mullikan 2017

More about Carole Mulliken: Carole is a DAI member and a member on our recently reinstated DAI Action Group, about to commence moderating a Discussion forum currenty being set up for members. She is also a founding board member of the Dementia Advocacy and Support Network International (DASNI), which was the first international online support group for people of dementia. Unlike DAI, membership was not exclusive to people with dementia.

With a diagnosis of multi infarct dementia, obviously now well over twenty years ago, Carole regards dementia advocacy as a second, unpaid career and herself a veteran of the dementia wars. She lives near Saint Louis, MO, and those of us at DAI salute her for being one of the shining lights who led the way for the rest of us.

Carole worked as an educator, a school counselor, a suicide crisis interventionist, an adjunct professor of composition, an educational consultant for a division of the U.S. Department of Education, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its website. She has published freelance feature articles for print publications and for several websites.  Lisa Genova, Ph.D., author of Still Alice, recognizes DASNI and Carole Mulliken by name as contributing to her own understanding of the lived experience of dementia.

“My Experience” by Wendy Sanchez

Screen Shot 2015-12-13 at 6.18.18 pmIt is delightful to be able to share our members stories with you, and this week, we have a lady from Mexico who has written a beautiful story of her experience with both dementia, life and becoming a member of Dementia Alliance International.

Our sincere thanks to you Wendy, for allowing us to share your life with our readers here.

DAI: “My Experience”

Written by DAI member, Wendy Sanchez, November 22, 2015

Three years ago, at age 68, I was in a deep depression.  I’d lost – in rapid succession – my home, my job, my driver’s license, my dreams.  I reached deep inside myself for an old dream; that of walking the Camino de Santiago across the entire country of Spain.  It was that or give up.

I completed that pilgrimage, wrote and published a book shortly thereafter, and then took a nosedive, mentally and physically.  My decline and the sudden arrival of dementia symptoms in my life were alarming.  Well meaning friends and family denied the obvious.  I was completely confused until I read the book “Still Alice”.

It was right out of my journal; and I quickly sought diagnosis, going first to my psychiatrist who had treated me for years for depression and a history of chemical dependence.  She also had my test results from the past few years which indicated a consistent decline.  When I told her of my recent experiences with “Alice”- like FTL symptoms, she agreed with my observations – with tears in her eyes – and started me on Aricept that very day.

We had previously discussed that I presented with multiple markers for developing dementia:  heredity, history of drug and alcohol abuse, decades of treatment for clinical depression, frontal lobe trauma from car accidents and spousal abuse, and YEARS of acute sleep apnea undiagnosed and untreated.

I’d almost expected the diagnosis, yet the shock was enormous nevertheless.

I had no transportation to get back and forth to doctors for much testing and I wasn’t in need of numbers to validate what I’d felt for years.  One psychologist visit and one brain scan were enough to document “mild to moderate cognitive decline”.

As many of us report, it initially felt like a death sentence to me; a dose of cruel reality that screamed “no hope” like a neon lamp.  Being single and not of independent means, I began to outline my suicide plans, like many before me had.  As an RN for decades, I knew there would come the inevitable ‘point of no return’ that heralded the end of my independence.

So the months since my diagnosis in March 2015 have rolled onward.  I returned to

Rural Mexico where I’d been living for 1.5 years with the intention to “take a lover and go snorkeling”. Hardly a wise plan because I was falling frequently, suffering anxiety attacks, challenged with word finding, speaking, understanding, and most executive functions.  I was also getting lost or disoriented, couldn’t find any information about what was happening to me, and scared to death.

At that point, I vaguely remembered a reference in “Still Alice” about DAI and  ? (the other organization).  I found their websites, clicked on members’ writings, found a trail of personalized information, and began to follow the leads:  first to make contact with an individual (Morris) who lived close by in Northern California.  He’d been a published sociologist and professor prior to diagnosis and guided me toward publications and writings by others’ as well, one of whom I have later come to know on line (Jeanne).  Someone else (Jay) contacted me on Morris’ suggestion just as I was searching for a support group.

I felt like Dora the Explorer on a journey of Hope.

Quickly I realized there were tools with which I could design a rehab program for myself.  Once I began to follow it, positive results soon followed.  Although incredulous, I actively follow that structure now.  The “perfect” days that fall with grace from the sky are seductive in that I think the doctors made a mistake.  As many of my peers confirm, the overall experience we share is often one of a roller coaster.

Finding DAI has made a huge difference in my life:  I have been invited into and participate in a weekly support group online, co-ordinated by Mick, who skillfully

Facilitates meetings globally.  The dedication and commitment of Mick, Kate and others in DAI make advocacy for international dementia rights a tangible vision.

It’s been an inspiration for me to see peers continue to “fight the good fight”, regardless of the toll it takes on their energy reserves.  My own personal journey is detailed in a Blog I began in order to advocate and educate friends, family, acquaintances (and their contacts) about the face of dementia; to dispel myths and fears about diagnosis and treatment; to describe our challenges and suggest helpful methods of communication. Being encouraged to continue writing by DAI members and blog readers reinforces that I can still write and hopefully serve others via that medium.

And, in that process, my words to friends and family have morphed from defensive – explaining what’s “wrong” with me – to creative advocacy as I remember that I am still a powerful writer with a voice to be heard.

The Blog in and of itself has been my own personal therapy yet it has impacted quite a few folks already.  I only need to review a few months to see that Hope lives, that Life continues, and – most of all – that I am NOT alone in this.

DAI brought humor back into my life at a time when I was sure it had abandoned me.  What can be more soul healing than shared laughter?

Author: A grateful member of DAI, Wendy Sanchez, Yelapa, Jalisco, Mexico
Copyright: Wendy Sanchez, 2015
Editor: Kate Swaffer