Stepping Into Their World

To be sitting in a doctor’s office waiting for news of a diagnosis is frightful. To then hear the spoken phrase: “it appears that you have dementia of the Alzheimer’s type,” ramps up the fear and terror factor even more. That spoken phrase was a game changer. Life as you have lived it, enjoyed it and taken it for granted up to that point in time just changed: irrevocably changed.

The very fabric of your world comprising what you think, how you think, what you think about and the lifetime of memories that it is all foundationed upon will all start to unravel. The awful part about it is that the unraveling had already started some 10 to 15 years previously. No pain, no discomfort, no real obvious clues as to what was headed your way.

The degenerating changes underway and those to come conspire to remove you from a healthy cognitive world and transport you into a smoke filled, murky nether world.  In time, you become completely adrift upon the dark waters of this realm. Your only contact with anyone really is via a proverbial life rope and buoy provided by a dedicated caregiver.

You cannot swim out of the world in which you are now floating within. Your caregiver has the potential to come and go between the world where they remain and the world you now inhabit.

The challenge for them is to learn the language and behaviors that comprise how you survive in Alzheimer’s World. By making this extra effort, this extra commitment, your caregiver gains the ability to step through the doorway dividing the normal world from the realm of Alzheimer’s.

Learning the language and behaviors of AD is no easy task. While it is one primary language, there are perhaps thousands of different dialects within it. Each dialect is the result of how one individual adapted to AD and attempted to create and put in play their own desperate survival measures. 

The language course for AD has no end. Not in a quarter, a semester or in a couple of years. For the devoted and compassionate caregiver, it is a life course: governed solely by the remaining life span of the person under their care.

I couldn’t help but thinking today that perhaps it was an inability to make this transition between our world and AD world that lead to the blog news article entitled, “Man Kills Wife Suffering with Alzheimer’s and then Kills Himself,” that appeared on Bob DeMarco’s Alzheimer’s Reading Room web site.  The gentleman featured in the article, now deceased by his own hand, may not have been able to ever reconcile and allow for the changes that befell his beloved wife.  I do not judge this individual for the action he took. Neither do I condone the path that he chose. I do feel compassion and heartache for the both of them and their families. May this couple rest in peace and grace.

As a married caregiver that works in partnership with his wife with two AD family members for the past 8 years now, I can only say that it is absolutely crucial to learn the language of AD. It will enable you to then travel between the two worlds. It is the responsibility of someone to be able to do this, since your loved one cannot reenter our world again. 

Learn the language: be the scout or pathfinder that stays connected to your family member. 

You will not notice it at the time. You may not notice for awhile after they are gone. Eventually though you will notice that something worthy and honorable has changed the who you are on the inside.

Find the courage to be that person.

Jeff Dodson

March 30th 2012

The 2012 Alzheimer's Report

The 2012 Alzheimer’s Disease Facts and Figures Report was released in February 2012 by the Alzheimer’s Association. It provides the latest statistical information regarding this disease including it’s effect upon those who have it, those who must care for them, and the economic cost of it all.

Out of this 71 page report emerge a few facts that remain scary and disturbing.

The diagnosis of Alzheimer’s Disease still carries with it an eventual death sentence. 

There are still only 5  FDA approved medications that can be taken for AD. All of them merely act to slow the advance of the disease for a short while only. None of them stop it completely and none of them will cure it.

5.4 million Americans is the estimated number of people who have been diagnosed with AD.

Almost two-thirds of Americans with Alzheimer’s are women.

Every 68 seconds, someone in America develops AD. In 2009, this occurrence rate was one every 70 seconds. Over just the past 3 years, that’s an increase of thirty-seven more people each second developing the disease.

Between 2000 and 2008, deaths attributed to Alzheimer’s disease increased 66 percent, while those attributed to the number one cause of death, heart disease, decreased 13 percent.

Over 15 million Americans provide unpaid care for a person with AD or other dementia's.

Eighty percent of care that is provided at home is delivered by family caregivers.

In 2011, these folks provided an estimated 17.4 billion hours of unpaid care, a contribution to the nation valued at over $210 billion.

At least 800,000 people in the United States who have Alzheimer’s disease are living alone, and people who have other forms of dementia add substantially to that total.

All of these statistics are incredible and unacceptable. 

Over the past 30 years,  our citizenry, scientists, and government rallied and united to  wage war against heart disease and breast cancer. It paid off.  The odds of surviving these diseases has risen dramatically along with the opportunity to return to productive lives. Not so yet with AD.

It’s time for a change in our thinking and awareness about AD and cutting loose the purse strings of government research investment dollars. For 2012, government funding for AD research stands at $498 million. The Alzheimer’s Association scientists have called for spending to be increased to $2 billion.  It should be bumped up to $5 billion.  Let’s get busy.

Jeff Dodson

March 27th 2012

Spiritual Nutrition

On the way to taking my wife to work this morning, we stopped at one of our Elk Grove Starbucks. I grabbed a Pike’s blend to go. While stirring in some sweetener, I noticed some tri-fold brochures entitled Nutrition By The Cup. Hmmm. A rundown on the calories and nutrients contained within? Educate their patrons and give them additional reasons to purchase Starbuck’s products? Great ideas. I know I’m already hooked.

Contemplating this further, it occurred to me that a substantial focus in our country lately has been upon personal health. Take care of our bodies. TV shows and magazine articles are all buzzing about getting healthy, staying slim and looking good. We are instructed to be mindful of what we are eating, how we are exercising, and the need for making positive changes. All in the effort to improve the quality of our lives and enhance our longevity. Get busy fixin up your looks, your weight and your stamina. All worthy goals.

What about looking at the nutrition topic from a different angle? What are we collectively and individually doing about our Spiritual Nutrition?

What active and consistent nutritional programs do we have in place when it comes to our spiritual awareness and well-being?  What positive energy meals and exercises are we offering to the spiritual side of who we are? Regardless of your faith or religious preference, good health on the inside is a must-have proposition as well as good health on the outside.

Perhaps it’s time to strike a balance. Feed the body. That’s one half of who we are: the outer package.

Time to feed and take care of the nutritional needs of the other half of who we are: that glorious software that powers us up.

You may consider the spiritual side of who you are as a primary internal core application.

Feed and cultivate an appreciation for it. And don’t forget to listen in for those whispered alerts from your Source signaling  incoming downloads and updates!


Jeff Dodson
March 9th 2012

Children and Alzheimer’s

Adults view a disease, particularly a neurological one such as Alzheimer's, as an obstacle, a threat, perhaps a nightmare monster that will be stalking  and hunting for them. Adults see the disease first, and no longer possess the ability or maybe the interest in looking past the disease at the person.

Children, by contrast, look, act and play from the heart; without guile, calculation or personal vanity.  Yes, Grandpa Smith or Uncle Woodrow happens to have Alzheimer’s, but they allow for that while still seeing, still interacting with, still loving that person.  Allowing is acceptance of a basic fact or circumstance without anchoring a bunch of negative emotions or behavioral baggage to it.

Children take their aging relatives just as they find them. Judgment, shame and fear will not lie nestled in their pockets along with some of their small toys.  

It is a tragedy that as we grew into what we believed was adulthood, we left behind our sense of wonder, awe and acceptance of many things. 

Possessing a sense of awe, looking upon the world with wonder and taking things for what they are (acceptance) provide a child with, what some might call, nonjudgmental vision. 

Watch a kid around any older loved one who is ill, or laboring with a disease including Alzheimer’s. They are there to express love to there family member and to accept it back in whatever form grandpa is able to provide it to them on that day.  They do not see disease with a person attached to it. They see a person who is older, slower and  wrinkly, but who accepts and embraces them.

Caregivers: how might we find a better sense of purpose in what we do if we viewed what we did with the eyes of a child?  It is within your reach.

Jeff Dodson

February 29th 2012

A Tribute To My Wife

Just over two years ago, I posted this blog. It was then and remains to this day, my tribute to the selfless caregiving work my wife has provided to her mother.

I am proud of my wife and never cease to be amazed at the depth of her love, her devotion to family and sense of dedication. It is February 26th 2012 and Penny still carries on each day providing companionship and tending to her mother's needs.

So here once again is my blog about my wife Penny.

Her Mother’s Champion

She arises very early each day: usually between 3:30 am. and 4:00 am. It doesn’t matter if it is a weekday, the weekend, or a major holiday.  A sense of mission, of duty, and of love and devotion motivates and fuels her engine.  

Her husband awakens later and joins her for breakfast.  Sometimes it is quiet. Sometimes there is conversation about the days planned events. Hands are held and admiring glances are exchanged. By 6:00 am. and, after a kiss goodbye, she makes her departure.  

It is a 12 mile drive to the place where she begins her “work day”. The place is called the ACC or Asian Community Center.  While originally opened primarily as a care and nursing facility for Asian Americans, the ACC now houses and welcomes all nationalities. Mother has advanced Alzheimer’s Disease and has been a resident now at the ACC for just over 5 years.

Mother will awaken this morning, like most of her mornings, to the encouraging voice and loving attention of her youngest daughter.  After warm smiles and reassuring tones, mother is gently prompted to wake up and begin her day.  A soft washcloth is applied to remove overnight evidence of Mr. Sandman and freshens up the rosy color in an 87 year old face. Next, the tousled white pillow hair is carefully brushed and coaxed into place. The better to be more presentable should company come calling unannounced.  

Incontinency announces its presence and it is time for a change.  Diaper removal, cleanup and redressing a bedridden patient demands a lot of time.  Sometimes, a new bodily function begins before a change out is completed. Back to square one.  None of it phases mother’s morning provider.

Small talk is exchanged between mother and daughter.  Daughter offers warm praise and encouraging comments. Mom struggles with her words and sentences.  Some words are clear and distinct, but most of what mom attempts to say is unintelligible.  For the daughter, the language shortcomings are no obstacle, since she has compensated in her ability to read her mother’s moods and body language.  Mom also seems to have compensated for her degraded cognitive skills by learning to read the messages her daughter’s posture, tone and face are conveying.  Thoughts and feelings are now shared without a spoken word.

The breakfast tray is delivered to the room at 7:15 am.  Though all of the items on the tray are pureed to facilitate swallowing, they all have been carefully presented and sculpted in a way so as to resemble the original item; whether it is a pancake, oatmeal, or an egg sunny side up.  Feeding mother can take some time, often running 30 to 45 minutes to consume all or most all of what she has been served.  On some occasions, mother is not in a equitable mood: resisting or only reluctantly taking in her beverage and meal.

Those who have progressive difficulty swallowing their food require extra attention and observation. Mother is one of this kind of resident.

Sometimes, mother awakens in a crabby or fearful mood: resistant to being moved or adjusted in her bed, resistant and uncooperative when being changed due to incontinence. Whether combative or cooperative, it makes no difference. The youngest daughter remains cheerful and reassuring in coaxing her mother into gentle compliance.  With the selective use of good humor, lots of smiles, exaggerated funny faces, and lots of positive reinforcement, the daughter coaxes and invites willing cooperation where there first was none.

The youngest daughter spends 4 hours per day on average providing diligent and loving care to her late stage AD mother.  4 hours a day of this kind of work is the equivalent of 16 hours of work in any other profession.  It can leave you drained and exhausted, yet the daughter never shirks or dodges what she has chosen to take on for herself.

At the end of her shift, sometimes the daughter has an opportunity to return home for a well deserved nap.  In the door, keys and purse plopped upon the kitchen table, then drop into the recliner chair.  In moments she is out. Drained but satisfied that her morning efforts were mostly a success. At other times, the demands upon her time from her aging father also require a visit to his home for assistance, housekeeping and bill paying.  That longed for nap and maybe a rejuvinating snack must wait a little longer.

Her work with her mother and knowledge of caregiving practices, therapy and medications has earned her the respect and admiration of several professional CNA’s and nurses at the ACC facility.  Some have remarked that she should take up caregiving as a career.  Yet she has had no formal  professional training nor certification in the field.  All that she provides to her mother has come from jumping in and just doing what came to her intuitively and out of heartfelt compassion.  Providing care and comfort for her mother is enough of a caregiving career for her.

The devoted and youngest daughter you have just learned of , I am proud to say, is my wife Penny who truly is her Mother’s Champion.

Jeff Dodson

February 26th 2010

Caregiving Way In Deep

My wife and I are caregivers. We have been caregivers now since 2004. For my wife, it’s actually been a bit longer. She started gradually with her own parents in, perhaps, 2002. Total are combined years up and we top out presently at 2 x 8 + 2. The math totals 18 years. That is a lot of time “way in deep” placing the needs of others first before your own.

For most folks, being asked to go that kind of distance alone would be too much. Unfortunately, we have found quite a few other individuals like us out there who have been “way in deep” for way to long of a time.  Spend any time with them and you can see the toll it has taken on their appearance, their health and their spirit.

To survive and come out whole on the other side means you have to have well-honed coping skills and at least one or two solid hobbies that you can absolutely loose yourself into. One of mine is obviously writing.

For us, we have each other. We share time each week raging at the moon, venting, letting out the caustic feelings, the sometimes anger and resentment towards those that we love that never intended to put us in this place: ever.

We  purge ourselves of the judgments that form.
Why did so and so not take care of themselves better and let their health, and their diet go to hell?

Why didn’t they read up and educate themselves more about better lifestyle choices?

When our simmering kettle of anger and frustration has been emptied, it is time to fill it with something else. We reach for and pull from wherever we find it: compassion, empathy and understanding. Warm, fresh and smelling like the air after a drenching rain.

Our generation has been blessed with better information, new discoveries, healthier choices, healthier food. Easier access to all of it and absolutely  no excuses for being in the dark about any of it.

The older ones that we have been caring for did not have that same informational privilege that we’ve tapped into. Can’t throw spears of blame when no one knew what kinds of risks and dangers were out there in the first place, can we?

At the end of each day, you gotta let it out and let it go. Permit yourself to bask in the realization that neither do you “own” the circumstances that you are caregiving in, nor do these circumstances “define” who you really are inside.

When you’re way in deep, you have to know what to do to come all of the way back out.
This is our survival secret.


Jeff Dodson
February 25th 2012


If you  are currently a  caregiver, or  previously served as one, drop us a line at our e-mail address of: www.imaginatic@frontier.com. We welcome your thoughts, stories and opinions about caregiving.

Are Alzheimer's Caregivers the Forgotten?

I'm taking the time to post what I consider a "must read" article that was authored by Bob DeMarco at his informative AD website, Alzheimer's Reading Room. If you have any family members or friends that you know that have been deep into caregiving of a dementia

diagnosed relative for some time, please read this article. It will give you some kind of idea of what they are up against. The next step, as Bob says in the article, is to step up and get involved.

Are Alzheimer's Caregivers the Forgotten?