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