Thursday, October 24, 2013


Our guest writer, Alice Kalso, can be read on her blog,

If your parent has dementia, it can be tricky when a care provider asks him or her direct questions.  The nurse says, "Do you have times when you can't make it to the bathroom in time?" Your parent answers, "No."

You know otherwise. So how do handle the dementia version of the facts?  Two responses immediately spring to mind.  Contradicting your parent in front of an authority--even if you're right--doesn't work.  It sets off a chain of defensiveness. A better way is to wait until after the formal conversation is finished to correct the mistakes in private.

Often my clients teach me things I'd never know otherwise.  Not long ago I observed a third way to handle skewed facts caused by dementia.  An adult child sat next to her father, who had Lewy Body Dementia. Across from them sat a social worker who did his "intake":  a series of questions designed to pinpoint care needs.

As the social worker began to ask questions, it became apparent that the older man's answers didn't match the reality. For example, when the incontinence question came up, the parent shook his head.  "No problems."

His daughter quietly slid her chair back a few feet.  Because of his diminished peripheral vision, caused by dementia, her parent could no longer see her body language.  She "corrected" his answers, simply by nodding or shaking her head, and taking notes on certain points that needed explanation later.

Who would have guessed that simply sliding a chair could have made such a big impact in ferreting out the truth while maintaining an elder's dignity?  We listen. We learn.  We grow.


Thursday, October 17, 2013


“Pin the Tail on the Donkey” was a game determined to make the blindfolded pinner look asinine. The experience of being blindfolded changed our requirements for functioning. Our emotions rushed from stomach to head causing our fingers holding the pin to tingle. We became aware of sounds and emotions we could no longer see.

A transient ischemic attack, commonly called a mini-stroke or TIA, changes the game. We experience loss that may be insignificant or earth shaking. The insignificant TIAs are more common than we care to know. A more serious stroke effects balance and we fall breaking a bone or hip. Or we lose the ability to speak with words that accurately describe what we think. This “spell” may last for a few minutes before we recover or we may permanently struggle like our residents say, “close but no cigar.” 

At Adagio we encourage each other by laughing when the wanted word hovers just to the left of right. As Nora Ephron wrote, “I know the word I want; it’s floating over there, but my brain doesn’t have peripheral vision.”

TIA’s force us to live along dotted lines. Our firm boundaries have broken down and we need our families to wander with us while we determine where we are and where we aren’t any longer. We also need them to gently provide the backbone as we hope with little hope to return to normal.


Thursday, October 10, 2013

DEMENTIA BOUNDARIES to be cont. later

For some time I have been wondering about the social boundaries—or lack thereof—we use as we experience social changes. It seems to me that the white picket fence has been replaced by barbed wire. Discussion of issues has become replaced by wholesale relegation. And it is wearing me out.

We take great joy in assigning hideous, gross terms to those whose views we disagree with. Hitler has become a popular comparison, although no specifics are given. Just Hitler. If you don’t know what “tea bagger” or “gang banger” mean, you won’t learn it here. “Brown noser” takes on new meaning when the subject shows a hint of African American progenitors. Speaking of racism, who decides that “cracker” or “N….” is the worse slur?

Parodie and clever emails are only funny to the viewer who has decided that the derided person is worthless. That automatic consignment suggests the parodist is taking a break from our common humanity. Snopes may be of service but even that research is done by people of bias.

So I wonder…if you are not my friend on a particular issue, does that make you my enemy? And if we disagree, does that mean that you are a liar, a pervert…you can finish this list with the term you last yelled at your television newscaster. Perhaps the level you stoop to in your name calling illustrates your frustration at being powerless to effect change. It does me.

I don’t know another human being who agrees with my opinions on every subject. Proves there are many smart people. Some of my opinions and boundaries are formed on the fly, but others are built by necessity to satisfy my basic needs. My voice becomes more shrill as your positions cause me pain. And that’s a fact I need to consider as I am tempted to call you “stupid” or worse.

If you get near Springfield, Illinois, the Abraham Lincoln Springfield Museum is a must. They built a tunnel and the sound system plays many Lincoln detractors and supporters shouting at you as you pass pictures of people and events of the Lincoln presidency. Yowzer! Makes Nancy Pelosi and Ted Whatshisname sound intelligent and impartial. (Was that a slur?)

Following Nixon’s election a New York maven exclaimed to her friend, “How did this happen? I don’t know a single Republican.”

So just to let you know, I am not interested in receiving your emails describing any politician in sexual terms, denigrating a politician on anything but their issue—let me re-write that—the topic of disagreement, and I am taking a break from politics altogether until I vote in the next election. I don’t think your poems and essays are funny and I will delete them, saying a prayer for our mutual sanity until better days. Establishing this boundary makes me feel better already.

Wednesday, October 2, 2013


Boundaries etch lines into our psyche like a potter etches design through the waxy ground on a goblet. Or like ocean sand grinds and polishes glass lost to the waves.

Some of our boundaries are intentional but many dig in unnoticed through our experiences, observations, mistakes. Only when we walk into a similar situation do we realize we hold an opinion. Only when that opinion is challenged do we realize how important it has become, how deeply rooted.

Boundaries maintained by fear paralyze us, disassociate us from ability to analyze and evaluate possible benefits of changing our position. Fear causes reactions to erupt from our *brain stem, emotional and irrational as we carve community into pieces irretrievable when we decide we desperately need to recreate a productive whole.

We may consider ourselves safe within such boundaries. In fact, we are isolated.

Dementia builds walls with fear as it slowly strangles rational past behavior. The challenge of caregiving is to learn the new boundaries as they appear, and adjust our behavior to accommodate. The challenge of leadership is to listen to community members explore the formation and defense of their boundaries.

*The human brain is divided into three parts: the Neocortex analyzes, observes, creates; the Mammalian loves, hates, bonds and plays; the brain stem or Reptilian controls automatic functions, survival, and unconscious acts like breathing.