Communicating In Alzheimer's World

Caring for one member of the family with AD was a perplexing and frustrating learning curve.  That began 6 years ago. 2 years ago a second family member began showing many of the early warning signs of AD.  Whoa boy! I had to start scrambling and hone up on my newfound caregiving skills for what began then as a double challenge.

It is now the beginning of 2011, and I have learned the basics of how to be a competent caregiver.  Here are a few thoughts of mine on this topic.

Time (For Them)
Your sense of urgency, prioritizing and self-awareness all reside within the domain of Cognition. Call these all your cognitive abilities. As this domain erodes and disintegrates with a dementia or AD person,  their sense of urgency and awareness of time (and timing) dissolves too. Eventually, all concern for and awareness of the passage of time for an AD patient fades to black.  Now what they were once expedient and quick about seems to take an eternity to accomplish.

Picture how honey inside of a cold jar behaves as you try to pour some out. This is the pace now at which an AD patient attempts to get through their day: every day. On occasion, all forward momentum devoted to a task comes to a halt. This often leads to frustration, pitching a fit, or just sitting back and dozing off to sleep in despair.

Time (For You)
For a good many of us, daily life means your right foot has the gas pedal pushed all the way to the floor. Every damned day! Go! Go! Go!  I gotta get all this stuff done today! Rush, hustle, cram and jam!

This is a mismatch for stepping into Alzheimer’s World. Kind of like attempting to grab a letter out of a mailbox as you drive by it at 70 miles per hour.  It’s not going to happen.

You must consciously visualize yourself  stepping out of and away from your own multitasking, hustle and hurry pace.  You must train and condition yourself into becoming accustomed to working with the momentum of the honey in the cold jar. It takes a lot of work, prayers and personal affirmations to stay calm, relax and not become impatient.  You work at and learn to appreciate small successes no matter how tiny they may seem.  Learn to cheer for those small accomplishments when you see the honey in the cold jar ooze forward just a half an inch!  Small steps are the new major movements.

Body Language (Yours)
For some AD patients, moving around and about them quickly makes them nervous or frightened.  Move and navigate around them at a  s-l-o-w-e-r  pace.  One of the things that some AD patients get good at and compensate for the loss of their language and writing skills is enhancing their ability to read the moods of their caregiver by watching their body language and posture. They also compensate by becoming very good at reading your facial expressions for signs of approval, rejection, disappointment, etc. Be mindful of the moods and expressions you are holding onto and wearing.  Work at being genuine and compassionate.  Sincerity cannot be faked.

Bob DeMarcos' information-packed web site, Alzheimer’s Reading Room, recently featured an article on hand and arm gesturing that is non-threatening and transmits the message of “come and join me.”  The selective use of a slowly extended arm with the palm of your hand turned up is a gesture widely known for communicating friendship, offering assistance, or simply a beckoning motion to come with you.  This is a great tool that serves to ratchet down the fear or anxiety of the patient who is upset, afraid or even angry.  Include this technique in your caregivers toolbox.

Body Language (Theirs)
For any AD patient, the loss of their former ability to communicate with spoken and written words is very distressing.  A high level of frustration is often percolating just beneath the surface waiting to boil over when they feel that one of their family members or a caregiver doesn’t comprehend what they are trying to do or communicate.

Remember: it takes all of their efforts and abilities to try and blurt out in a compromised or unclear fashion what they either want or need from you at any particular moment.

Tune in on how they move and carry themselves. When something alarms or upsets them, you’ll eventually begin to notice it. What you notice at first may be nonverbal.  Stopping in the middle of walking down the hall or into a room.  A hesitation that suddenly arises. A bewildered or frightful look expression takes over their face. Stop. Address the fear or hesitation. Reassure and comfort them. This often works to dial back the patients’ fear and worry.

Approaching a AD patient.
As an AD patient transitions into the moderate to severe stage, sudden, surprise appearances or approaching them from behind quickly can panic and disturb  them.  They do not like being startled or taken by surprise.  Give them every opportunity to see you coming.  As you come to within speaking distance of them, stop. Introduce yourself and offer a warm smile.  Give them a moment before you move closer to them.

They Don’t Remember Who I Am  (So What!)
As I have previously written about in a blog article entitled, Your Brain: Memory Processing And Accessing At Risk, the collective memories that each person has stored of another person are spread out among 4 separate file cabinets in the brain. Name, facial features, smell and body language traits are all stored separately: not together.  All it takes is neuron damage with one of these brain file cabinets and the person will then have accessing problems figuring out who you are. Ditch once and for all any remarks about remembering you when you introduce yourself or converse with the person.  They would if they could, but try as they might, they just cannot damned well put a name to your face.  Your visits and encounters with your loved one should not be about validating who you are or your name. Get real and get past this vanity of your ego.

Reassurance
You cannot provide too much reassurance to a dementia or Alzheimer’s Disease patient!  They need to hear and see from you and family members words and signs of reassurance every day!
Praise them for doing something right. Praise them for eating all of their meal.  Praise them for taking all of the medications they are supposed to.  Tell them how much you love and care for them.  Spend a few minutes sitting next to them in their chair or at their bedside simply holding their hand.  AD is a scary and frightful damned disease to be dying with.  While the terrible and excruciating pains of cancer, for example, are absent with AD, the helpless feeling of knowing that small pieces of your mind are evaporating each day creates its’ own unique hell.

Your Voice Tone
This requires as much work at times as does learning to cultivate patience.  Many of us betray and communicate our joy, our frustrations, or our anger by our voice tone.  Learning to lower your voice while speaking clearly and at a slower cadence will transmit a calming message.

When They Say No...You Say...
As the disease progresses, you must anticipate encountering more no’s, more refusals to do something, or other acts of what seem to you as ones of defiance.

You must understand where this all comes from.  No, comes from primarily fear, apprehension or the notion of embarrassment or personal ridicule. Your loved one is not trying to go out of their way to piss you off, to anger you.

From their perspective, everything is becoming more gray, more uncertain, and substantially harder to comprehend.  A no response often really means, “I’m scared,” or “I don’t really understand what you are asking of me.”

When you hear that no, it is now your time to become creative. Your responses might track along these examples.

Mom says no, she’s not ready and doesn’t want to lie down and take a nap.

“It’s OK mom, we don’t have to do that right now, maybe another time.  Maybe later this afternoon?  Sure. We can give it a try again then.”

You were going to take Grandpa outside on the patio, but a loud noise startled him, and now he doesn’t want to.

“Grandpa, it’s all right. We don’t have to go outside just yet. That sound that you heard was just (an airplane, a fire engine, a train, etc).  Nothing that is going to hurt you or get into your room.”

Dad is becoming more leery of one of the walls in the hallway to the bathroom.  He says their
are moving shadows upon it that scare him. He doesn’t want to walk next to it.

“That’s OK Dad. I understand.  How about if I do something to fix it? Maybe make the shadows
go away?” (Move or put up pictures or artwork along the area to cover it, or just turning on or adding a brighter light in that hallway to eliminate any shadows).

We never become too old to learn something new.  As a practitioner of the evolving art of caregiving, I can tell you that I have learned something new every week over the past 6 years. I tip my hat to and applaud all of the caregivers who have come before me.  I also have the utmost respect for many of the younger men and women who have begun their careers in caregiving that bring energy, an open mind and reverence and respect for the elder citizens that they will be providing for.


Jeff Dodson
January 2nd 2011