Don't Let Me Be Forgotten

No one living relishes the thought of going to their grave having been completely forgotten. All memories of them erased, swept away or turned to dust upon the wind.  Whether it is a person of established wealth and acclaim or the lowliest of paupers, the inner desire is the same: to be remembered by society or someone else for something of value.

“Don’t let me be forgotten,” is often heard at the bedside from those who are terminally ill and close to passing.

Each of us finds some comfort in the thought that their are a number of usually family members, coworkers and friends that will feel and remember the loss of our passing.  The memory of who we were will live on with at least one other person. Even those among us who have led humble, unassuming quiet lives find comfort in knowing that somewhere, someone will own a memory or two of them tucked away in a small mental coin purse.

For a person stricken with Alzheimer’s Disease, the fear of dying forgotten is particularly enhanced. It is so because AD is a neurological disease that virtually destroys all of the memories of who a person is as well as all of their life’s accomplishments.  Their life’s entire mental diary, their log, the rich personal narrative of all of their years is irrevocably taken away.

They evaporate from the inside before they die on the outside.

The AD stricken person goes to their grave with a travel bag empty and devoid of every memory of themselves and their life’s accomplishments. A fear they carry with them of arriving at one’s final destination with empty luggage in the presence of our Creator.

An opportunity thus arises for the family, the caregiver, the loved ones of the AD person. What can you do to perpetuate, to keep alive, the memories and experiences of who that person was and what contributions they brought to their lives and those around them?  What can you do to keep alive the memory of who that person was? How can you celebrate their life’s work?

Perhaps a memory scrapbook, a photo album, a collection of stories they were famous for always telling or stories that were told about them. Maybe a written journal or a personal essay elaborating upon one or more of the attributes or qualities you admired in that individual.  Poetry is another elegant way of paying respect to the memory of another.

Call it a form of tribute, a kind of honor to bestow upon the one who is dying of AD.  A means to bring attention to that which they were long after they have left our world, our earth school and returned to the realm of Spirit.

Let them know, while they are still here, while they still can understand, that their name will remain within the minds of those dear to them.  It will be through your efforts that the memories and deeds of the loved one or friend will be memorialized.

It is through the creation of this kind of gift on behalf of another that you as a caregiver, a family member or friend will experience your own sense of fulfillment.

Would you not feel comforted yourself if the situation was reversed?

Honor their memories, honor the best of who they were and offer testament to others of the stories that illustrate their life journey.

A creative and loving act to the impassioned plea of, “Don’t let me be forgotten!”


Jeff Dodson
January 27th 2011

From Self-centered to Selflessness

Self-centered.  To place the interests of oneself ahead of or above the interests of all others. Me first. I’m doing MY own thing.  My quality of life comes FIRST. I need to have MORE possessions around me than anyone else.  Just let someone else donate their time to that cause or that person. I’m too busy with my own inviolate priorities. The message we receive on a daily basis throughout our society seems to drive this kind of thinking into everyone.

All of the emotions we have wrapped up with  our self-centered attitudes come under fire when we are confronted with having to take on the caregiving responsibilities of another.  Call it the big shakeup.

“Aw hell, there goes my life!”, says the voice in your head.  “Why the dickens does it have to be me?” then comes next.  The thought of making a sacrifice for the benefit of another is a perceived glass of bitter bile for many folks.  If the sacrifice involves caring for an elderly parent or relative that you have not had a good relationship with, the stakes go even higher.

So your self-talk goes like this:
“I’ve never gotten along with them, and they never missed a chance to put me down, find fault with what I did or judge me for the worse in other instances. Now they’re looking for someone to provide caregiving to their sorry ass? Not only no, but how bout a HELL NO! to them!”

The choice you are faced with comes down to a simple one. Have a go at caregiving or take a fast hike.  The preponderance of folks in our society take the hike.  It is not within them, nor are they ready, to step away from  egocentric thoughts and activities and embrace the role of a selfless care provider or nurse.

Often times though, the ability to make the choice is not an option. One particular family member might simply wind up being the only one available or on the scene when the caregiving crisis trumpet blares. That was pretty much how it was for me.  The dutiful son that had the most frequent and consistent contact with mom & dad. Tag! He’s the one: he’s it now.

Up to that point, I had envisioned and dreamed of  the same kind of life as my father and grandfather had. Invest so many decades in the working world, transition into retirement then spend perhaps 15 or 20 good years with my partner enjoying the relaxed pace of a non-working life with a small but comfortable pension.   Travelling, hobbies, long walks together and working on the home garden and landscaping.

Well Jeffrey my boy, this was a script that your life was definitely not destined to follow.
A caregiver’s apprenticeship is what’s in store for you.  Time to join the 40% of other caregivers in America who are menfolk.

Conscripted into the ranks I went. Reluctant, apprehensive and with a feeling of being gypped out of my me first little realm.  Fortunately for me, my relationship with my parents from the time I was small was nothing like the negative examples touched upon above.  I was raised within a loving and compassionate household with parents that would give me the shirt off their backs or go hungry if it meant that I would not.  It simply came down to reciprocation.  

After a couple of years of self righteous indignation, I came to view my circumstance in the following fashion.

The game of life front loads your first 25 to 30 years of existence by providing that you are being cared for and nurtured by your parents. You have no say in the matter, but enjoy all of the up side benefits.  Mom & dad do all of the caregiving and delivering on your behalf.  They are the givers while you are the receiver.

Fast forward now to the folks in their 70’s and 80’s with all of their emerging aches and disablement's. This is the back side of their life. Here is where you come back into the game for maybe 10 to 15 years. Time for you to provide positive pay back  to them for what they did for you all those years ago.  Kindness, love and generosity compels the same in return.  

No sir, I was not raised to be the son that was going to be viewed as a flake. Time to suck it up and step up on behalf of those that are now in their time of need. Perhaps they come to view you and your actions now as that of a shield and sword wielding centurion, returned to defend his homestead and its elderly occupants?  Is that so bad after all?  Accept the role, hold high the shield and fill the sandals.


Jeff Dodson
January 17th 2011    

Your comments and observations regarding this blog and those before it are welcome and encouraged.

An Inspirational Book

As a writer and blogger about Alzheimer’s and Dementia topics, I can say that part of my inspiration to take up writing came from first meeting, then reading the book written by Frances H. Kakugawa entitled, Mosaic Moon.  That was in November of 2007 during the course of  a presentation that Frances  made at a local Sacramento, California area care facility.

The book is a wonderful collection of poetry written by Frances and other caregivers, many of whom have had no formal training in the craft save for the strong pent up emotions of caregiving that needed a release or voice.  Frances empowered each of them with the basics of how to write poetry.

My copy of her book is chock full of colored sticky note tabs bookmarking each of my favorite poems.

And now Frances has just released another book entitled  Breaking the Silence: A Caregiver’s Voice through Willow Valley Press.

I was fortunate enough to run into a family friend who generously allowed me to borrow her brand new copy for a quick read.  I sat up late the night before last, then got up early the next morning to read and finish the new book.  If anything, as an experienced caregiver, I found plenty of verses and emotions to identify with while reading the powerful and touching poems that were penned by a wide variety of caregivers as well as those by Frances herself.  Thank You Judy for sharing a book from an author we mutually admire!

Writing, journaling, and poetry writing are wonderful vehicles to provide an outlet for  the release of anger, sorrow, frustration and joy. I have found it to be so during the course of crafting my blog essays on caregiving topics.

For those among my readers who are caregivers, take time out to track down a copy of either of these little jewels authored by Frances Kakugawa.  For those readers who are not active caregivers; I urge you to read these books as well.  You will gain insight into the world of a caregiver and what it is like to take a journey with another on the edge of their life.



Jeff Dodson
January 13th 2011

Your comments and opinions regarding this posting are most welcome and encouraged.

Connectomics

As a writer and blogger about Alzheimer’s Disease, Dementia and Cognition, I am always on the lookout for where the latest medical research is headed in the quest for an answer to stopping AD or even an eventual cure.

Over the recent holidays, I came across an unfamiliar term at one of the science news web sites. The word or term is connectomics. Connect what?  Connectomics.

A hybridized word first introduced by Professor Olaf Sporns in 2005. He coined the word to  describe what he envisioned as the frontier science of micro cellular nerve circuit mapping.  Thereafter, micro cellular nerve circuit mapping or connectomics, began to gain traction as a new field of neural science in 2007.

At the forefront of this field is Dr. Jeff Lichtman of Harvard University. Dr. Lichtman has received the backing of the National Institute of Health for his work along with $40 million in NIH grants to fund his Human Connectome Project.  The HCP is analogous to the Human Genome Project which successfully took on the challenge of mapping the human genome.

The Human Connectome Project calls for the complete mapping of all of the neural cell circuitry paths within the human brain.  

The computing storage capacity projected to be required for the completion of this project will be formidable.  Present projected estimates forecast a data storage demand of something on the order of 1 million petabytes.  To give one an idea of what kind of number this is, consider the following.

A single petabyte is 10 to the 15th power or 1 quadrillion bytes of data. Now multiply 1 quadrillion times 1 million!

By way of comparison, Facebook can  store up to 40 billion photos with just 1 petabyte of storage at one of its US server arrays.

The human brain is estimated to contain approximately 100 billion neurons (nerve cells) with an aggregate total of 100 trillion synapses.  Each neuron can have as many as 10,000 connections to other individual neuron cells.  This is a mind boggling network of intricate and microscopically small circuitry.

A comparable challenge will be developing sufficiently powerful enough software that will allow for the automated generation of three-dimensional nanoscale images of brain tissue.

Hurdles still remain in developing super fast and reliable mathematical algorithms and robotic imaging machinery that can reliably see and interpret a wide range of neuron cell shapes.

Nevertheless, Dr. Lichtman is moving forward with this project and there is a lot of excitement being generated in the field of neuroscience over what discoveries might occur during the course of the work.

Medical science hopes that this project will allow them to better understand human memory, intelligence, mental disorders and neurological diseases such as Parkinson’s and Alzheimer’s.

Definitely a long term project with the payoff 10 to 12 years down the road but still one that sounds promising and exciting.


Jeff Dodson
January 6th 2011

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