Last Sunday my friend  Beth and I travelled to Grand Rapids for a conference.  We took off from Ann Arbor later in the day with an encouraging  70 degree breeze.  I shed a layer before getting settled in for the drive west.  Earlier in the year we had both been asked by powerhouse and pioneer in the field of dementia care, Ann Robinson, to speak at this conference.  Ann,  founder and executive director of Optimal Life Designs in Dementia Care, and her dynamite staff co-created the days events with Clark Retirement Community. The title of the conference was “The Heart & Spirit of Caregiving.”  In its second year,  the conference was located at the very impressive  Prince Conference Center on the campus of Calvin College.  As Beth and I  hail from the University of Michigan we were surprised and a bit envious of their facilities which happen to border a natural and gently rolling landscape lined by woods and dotted with ponds.  The air was very cool when we arrived so we felt a little better about our warmer and bluer home to the east.

Travelling with Beth is a slice of heaven really. In addition to being a wonderful friend, she is a brilliant social worker, author and a national expert in dementia care.  She gets me and she gets what I love about memory care and she continually helps me do it better.  Lucky me, I have been able to travel long distance with her more than once this year as I grill her with questions and seek her advice.   All the while being hyped-up on caffeine and swerving  ever so slightly every time I look her way towards the passenger seat (At least I assume so since I have been told numerous times by family members that I do this).  Beth has never complained so I can only assume she is either terribly frightened or also having a great time.

On the way home, Beth and I  travelled with a distinguished colleague who also happens to be a member of the UM Silver Clubs Coffeehouse Memory Loss Seminar.  Ken courageously took the stage early that day,wow-ing over 300 people with his honesty and humor, which culminated in a standing ovation (and some whistling from me &  from Beth) .  You may recall a previous post of mine about the nature of professional relationships in memory care being very different?   Ken, PhD and retired economist, has agreed on numerous occasions to share his story of living with memory loss and Mild Cognitive Impairment (MCI) with small round tables as well as packed conference rooms around the State of Michigan.  Initially diagnosed with Alzheimer’s disease he lives his life fully day by day in full awareness of the possibility he is living with some kind of progressive memory disorder. Ken is distinguished and funny, an accomplished writer and poet, and can also play a wicked hambone.

We gabbed like kids on a bus  trip to an amusement park all the way home, digesting the days events and discussing big picture politics and personal questions.  There was even a candy break involved compliments of my daughters sucker stash.  I was fortunate to listen and be listened to and thankful to have Ken’s consent to share the poetry he shared at the conference on this blog.  He defines courage. In times like these, when our nation demonstrates its confused participation in madness, knowing someone like Ken helps us remember it is not the whole story.  Outside of the media circus and fire-fanned chaos there is a wave of compassion which will one day swell and overtake the shrill voices of fear, hate and separateness.  There is inspiration in our American story and a mindful alternative from the noise, we just need to quiet down long enough to hear it.  Thank you Ken.

My Mask and I

By Ken Saulter

I look out through my mask occasionally,

To see who is there or if I have to speak.

Can you see me?

Too bad my voice is so broken but my mask and I

Know who I am. Can you hear me?

I’ve lost a lot of memories, but plenty remain.

My mask and I stand stoically as memories shift in and out.

Do you know who I am?

The world is smaller with a heavy mask on and where is the smile?

Where is the touch of my hand? Will I always feel lonely?

My body and mind grow stiff. My mask and I know why.

Maybe I’ll turn to stone someday. Will I learn anything, anymore?

I look out through my mask, occasionally,

To see who is there or if I have to speak.

My voice keeps getting smaller. Can you hear me?

And my body becomes less and less.

Can you touch my hand? Must I take that pill?

 And then, suddenly, someone different sees me and hears me

And smiles at me and I see things in a new way.

 And I become more rather than less.

And my mask melts day after day and

People look at me directly and see me as I am.

And there’s no more “through a mask” living.

The table has turned as has the burden of the mask.

 Do you see the colors I’ve chosen for my canvas? Isn’t my voice strong?

Yes, and I see that you are listening to me now!

 

*This poem explores the idea of dementia as the wearing of an internal mask worn everyday. It also recognizes the important role that caregivers serve by supporting and encouraging creative expression among those who have to deal with the burden of the mask and the struggle to keep one’s identity. These ideas were inspired by what I learned at the 2009 Edna Gates Conference.  Oct 04, 2010; Ann Arbor. Ken Saulter.