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 3 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 these kinds of residents.

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

December 26th 2010

2010: Getting Serious About Alzheimer's Disease

On December 13th 2010, I wrote about the passage of the Alzheimer’s Project Act being passed by the United States Senate. It was then awaiting a passing vote by the House of Representatives. The House has now voted on and passed this landmark piece of legislation.  It has gone to the President’s desk for signature into law.

The passage of the Alzheimer’s Project Act  by our 111th Congress caps off a productive year of work in making  Alzheimer’s Disease a national priority.

It is worth reviewing the events of 2010 regarding Alzheimer’s research and the growing worldwide concern about the staggering social and financial expenses associated with the disease.

On April 30th 2010, the National Institute of Health released a Draft Statement entitled National Institutes of Health State-Of-The Science Conference Statement / NIH State-of-the-Science Conference: Preventing Alzheimer’s Disease and Cognitive Decline.  The paper reviewed all of the available evidence that can be proven or substantiated about Alzheimer’s Disease from worldwide medical research and  clinical trials.  The NIH report concluded that much of the research that has been done was short on hard evidence about AD causation, progression and risk factors.  In other words, a lot of work had been done in a variety of areas without any major payoffs. The report called for a more organized top down approach to how trials, studies and research is conducted going forward.  

In September 2010 a poll taken by USAagainstAlzheimer’s disclosed that 88% of our registered voters said it was important to make AD a priority, even with the budget deficits we currently face. The poll also revealed a surprising 77% of those Americans interviewed said that they have been touched by Alzheimer’s Disease.

On September 22nd 2010 the World Alzheimer’s Report 2010 was released.

The statistics cited in this report were alarming and scary.  While many of the industrialized nations of the world are slowly taking steps to educate themselves  and their citizens about AD and dementia,  a substantial number of developing nations still lack the funds and resources to provide meaningful assistance to their own target population of both diagnosed and undiagnosed AD citizens. Some developing nations are also hampered by negative and superstitious cultural and tribal taboos regarding AD much like how Leprosy was viewed 150 years ago. 

The report called upon world nations to make dementia a health priority and  to develop national plans for dealing with the disease.

On October 15th 2010, The Shriver Report, A Woman’s Nation Takes On Alzheimer’s was released.  Maria Shriver, an ardent and passionate journalist and advocate  of women’s issues released this report which set off a nationwide dialogue about Alzheimer’s Disease. The nationwide discussion continues while the call for more AD and dementia education and research investment also grows.

The National Alzheimer’s Project Act or  NAPA was finally moved from languishing in a congressional committee to passage by both the Senate and the House of Representatives by mid December 2010.  

The following elements are provided for in this legislation.

A position within the Health and Human Services Administration to  oversee and drive a national AD program. It also provides for the acceleration of treatments to eventually prevent, halt and reverse AD. The act provides for an integrated national plan to overcome AD and coordinate the healthcare and treatment for our citizens with AD. Coordination with the United Nations and other international AD organizations is also included.

We are now beginning to make up for the more than 5 decades of time that followed Dr. Alzheimer’s discovery and naming of the disease in which nothing was done to further our understanding of how AD works or why people succumb to it. We have begun to move past ignorance and disinterest and on to a sense of urgency and national purpose about AD.

There are more than 150 gifted and talented doctors and cutting-edge researchers that contend that  AD can be stopped by the year 2020 given that we act in a forceful way now and with adequate research funding.

We have much work to do in order to make this dream a reality.

Jeff Dodson

December 19th 2010

Why Didn't I See It Before?

Spend any time at all on the internet and you will eventually see one of those visual puzzle or multiple image advertisements inviting you to count up the number of different images or faces that you see within a given picture.  Another variation of this often in the back pages of a magazine such as People, is two images of the same scene presented.  The details within the second image are close to but not an exact match of the first image. Some details have been added; some have been removed or relocated. In each case, your goal is to count up the total number of faces, or altered details you spot that will equal the number of actual faces or changes listed in the answer key.

These kinds of visual puzzles can be fun and entertaining.  There is also a more serious side to the process of what your mind is seeing.

For one thing, people tend to see and hear only what they already expect to see. In other words, they already have a preconceived notion of what ought to be visible or audible to them. Whatever you are locking in on (expecting to see or hear), also means that you are also locking out and dismissing a lot of data, sounds or words that don’t match with what you want to experience.

We wind up seeing what we want to see; and hearing what we want to hear.

This perception process has a lot to do with what is known as your RAS, or Reticular Activating System.  Your RAS is an area of the brain stem that is primarily responsible for arousal, alertness, and sleep-to-wakefulness transitions.  The RAS acts as a kind of filtering system between your conscious and subconscious.  Your RAS takes instructions from your conscious mind and then passed them on to your subconscious mind.

Make an adjustment to your RAS filter and you suddenly begin to see or hear things you had not noticed before.  Kind of like changing the channel on your HDTV.  A different station, different program and a different point of view.

Respected author, speaker and noted sage Dr. Wayne Dyer is well known for his quote, “When you change the way you look at things what you look at changes.”  Dr. Dyer’s quote is right on point with respect to the topic at hand. When operating, your RAS locks onto something you are highly interested in or motivated by.  At the same time it is also locking out a lot of other things you have deemed as irrelevant or not important. Thus you will see some things, but lock out, ignore or overlook others.

Paco Underhill, in his retail sales research book entitled, Why We Buy, summed it up very well when he addressed the issue of how customers of a business can act in a way that is a complete  surprise to the merchant owner.  Mr. Underhill simply surmised, “the obvious isn’t always apparent.”  The issue in the book concerned merchants being caught off guard by a customer behavior because the merchant was only looking at things from a sellers point of view instead of a buyers. Step into the shoes of a buyer and now the merchant sees things he completely missed before.

So what happens when you decide to tone down or shut off your RAS filter?  What might you begin to see or experience that is different from what you did not see or experience the first time you viewed an image, met someone new, or conversed with a relative?

Start to look at things differently and what you notice will be different from what you saw before.  Open your mind up to new possibilities, and what you experience will now be seen or felt in a new light.

As a caregiver who has been working with Alzheimer’s and dementia stricken parents over the past 6 years, I have made substantial efforts at trying to see things from the point of view of the parent with the failing cognition.  Entering Alzheimer’s World requires patience, adaptability and the desire to change the way you view what is happening with that person.

You CAN see as though you are seeing things through the eyes of another.  You just have to adjust your on-board mindware a little.

The choice is yours.


Jeff Dodson
December 19th 2010

A Promising New Alzheimer's Disease Finding

On December 10th 2010 the online medical information web site Medical News Today,  featured a report  concerning the work being done at the Washington University School of Medicine, St. Louis.  The article, entitled, Poor Brain Protein Elimination Linked to Alzheimer’s Disease Development,  disclosed that beta-amyloid, which is a hallmark of AD as it begins to build up into clumps and tangles, is normally purged and disposed out of healthy neuron cells.

The key point of what they focused upon in this study is this:
Beta-amyloid is one of many cellular waste products that is produced by the neuron cells that, in a healthy brain, is normally disposed of and flushed out of the brain through the spinal fluid.

In other words, the cells in our brain are naturally equipped with a mechanism for clearing out the sticky protein junk that leads to AD.

The breakdown of this cellular “trash removal process” is what leads to the toxic buildup of beta-amyloid protein followed by progressive brain cell die-off.  In other words a proverbial “garbage handlers strike” within the brain cell community arises.

The clearance of Beta-amyloid out of the cells, not its accumulation is the heart of the AD problem.

Now besides refining medications already on the market which are aimed at reducing the buildup of beta-amyloid protein, medical science can now begin to focus on developing medications that will prevent the cells from shutting down their waste processing function in the first place.

As I have written about before, we may be closer to blending two or more medications into a kind of cocktail for AD that has proved to be the successful technique at bringing AIDs under control throughout the world.

The preferred future “Alzheimer’s Cocktail” might very well be composed as follows:

First, a medication that will reawaken or enhance the cellular waste disposal function.

A second medication that goes to work at “protein plaque and tangle busting”.

Finally, a third medication or therapy component that stimulates the production of brand new neuron cells (neurogenesis) through stem cell intervention.

This is promising and exciting medical research.  We applaud those who are researching  AD origin and causation from the angle of sustaining the process of healthy cells purging out unwanted proteins and cellular waste.  This could be the key in shutting down the Alzheimer’s process before it even has a chance to begin.

Kind of like preventing the beavers from even showing up at all to build their pesky dams and block up healthy stream flows.


Jeff Dodson
December 13th 2010

Congress Takes On Alzheimer's

On October 20th 2010 I posted an article on my blog entitled, “Ramping Up
Investment In Alzheimer’s Research”. In this article I mentioned the National Alzheimer’s Project Act and how it had been languishing in a committee in our 111th Congress without being brought to a vote.

I am pleased to see that the United States Senate voted to pass the National
Alzheimer’s Project Act (S. 3036) on December 8th 2010.

The bill now goes to the House of Representatives (HR 4689) for a vote. Time is running out and we need everyone to call, write to, or e-mail their House representatives, urging them to vote affirmatively for the bill. Once done, it then moves to the desk of President Obama for approval and signing.

The key elements of NAPA, previously presented in my October 20th blog are again listed here.

National Alzheimer’s Project Act, or NAPA. (S.3036 and HR4689). This bill was sponsored by Senators Evan Bayh (Dem -IN), and Susan Collins (R - ME)on February 24th 2010. This piece of legislation includes the following action items.

1. Establish an Office position for AD within the Health and Human Services administration.
2. Accelerate treatments to prevent, halt, and reverse Alzheimer’s Disease.
3. Responsible for the creation and maintenance of an integrated national plan to overcome AD.
4. Coordinate the healthcare and treatment of citizens with AD.
5. Ensure the inclusion of higher risk ethnic and racial populations in the
receipt of care,research and the participation in clinical trials.
6. International coordination.
7. Provide information and coordination of AD research and services across
all Federal agencies.

According to sponsoring Senator Evan Bayh (D-IN) the bill “will create the first-ever national level plan to combat Alzheimer’s.”

Enacting NAPA, is a major signal that our government is finally taking seriously the approaching “Alzheimer’s Hurricane” threat to our aging Baby Boomer population and their parents.


Jeff Dodson
December 13th 2010

Grounded In The Present Moment While Acting As A Caregiver

As a caregiver, a lot of thoughts go through your mind while you minister to your family member or loved one. Much of it comes down to worrying and anguish over what actions you should have taken in the past to maybe prevent what is now before you. An equal amount of stress is generated over concern with the future. We find ourselves drifting away from the present with what could have and what should have questions over the past and what if and suppose that questions regarding the future.

Choosing to stay grounded in the present moment with your patient or family member is actually a more simplified and doable mission if you take to heart the following mindset.

Science fiction aside, the past has already taken place and is a completed action. It is not subject to retrieval or alteration. What has already happened in your life and that of your patient is now out of your grasp and control. Stop trying to skewer air with a fork.

The future has yet to occur and is by no means certain. Many outcomes are possible, and, subject to influences and events that you cannot anticipate. Since we are not deities, we cannot foretell that which has yet to come.

The present is where you and your patient currently exist. It is the only place that you can really have an impact with while you are there. You stay engaged and attached to the present moment by retraining your mind not to wander off it’s assignment. Think of it as training your mind to operate on a leash. You hold onto the leash. It is your responsibility to give a firm tug on the leash when your mind begins to wander; to call it back to the present moment. This is doable but requires discipline.

I work at it every day. My own tug on the leash is to invoke the sound in my mind that occurs from an old time stereo record turntable needle or stylus skipping across the top of a record album. That unique sound, which I call up when I begin to feel my mind wander, serves as my attention getting device. It causes me to stop and recall my inner attention back to the present moment.

Your patient or family member will respond to you better, seeing that you are fully aware of them and acting towards them in a heartfelt authentic manner. They will sense that you are giving them your full attention and not just partially engaged. By not appearing distracted or mentally elsewhere, chances are that your patient will not have a reason to think that you are upset with them or that they have done something wrong. It follows then that they will feel more comfortable with your presence and interactions with them.

While many people with Alzheimer’s struggle with loosing their language, reading and comprehension abilities, they often are able to compensate for the loss of those skills by zeroing in on reading the emotions and body language of their caregiver and family members. For some reason not yet understood, the area of the brain where emotional memories and interpretive skills are stored is one of the areas of the brain that is spared and not destroyed until the very late stage of AD.

Choose to make tomorrow the day that you discipline yourself into remaining in the present moment with your family member or patient. What happened with them yesterday, or last week, doesn’t matter today. It is now over and out of your grasp.

What might happen tomorrow or next month is only a possibility but not a certainty. This too is out of reach.

Use your imagination and be creative at coming up with your own alarm clock sounds in your head that you hear chime, scream, honk or blast away when your mind begins to wander away from your patient and the present moment. Or how about using the experience of what your cell phone feels like when the ringer is silent but the phone is set to vibrate?

Every day will be different for a person stricken with AD. Overall, there will be good days and there will be very bad days with a lot of variation and unpredictability. You adapt and reeducate yourself as a caregiver by remaining grounded in the present moment. After all, the present moment is all that you can actually experience at one time anyway.

Further reading as it applies to living and staying engaged in the present moment.
Eckhart Tolle’s, A New Earth, Awakening to Your Life’s Purpose. The Penguin Group 2005.


Jeff Dodson
November 12th 2010

Your Brain: Memory Processing And Accessing At Risk

Our Brain. Arguably our most complex and awe inspiring bodily organ.

At it’s most fundamental level, our brain is an electrochemical signal processing organ with a formidable memory storage capacity. Think of it as the ultimate, soft 3 lb. onboard computer.

Medical research has discovered that the dynamics of the brain’s memory encoding and storage comes with a few surprises.

It turns out that our memories of a family member, our emotions, sounds and smells are composed of not just one singular memory experience. Instead each event is a combination of separate and individual sensory, emotion, sight, sound, smell and language components. The brain receives its incoming memory data from the eyes, ears, nose and skin. It then processes and encodes most of it within the Hippocampus. The now brain readable memory is then shunted off via neural circuitry to one of several specialized regions of the brain for storage and future retrieval or accessing.

Thus, all memories having to do with, say facial recognition, are stored in one region. All memories having to do with sound are stored elsewhere. Emotional memories have their own file cabinet, and so on.

What does Aunt Maybel look like?
File cabinet #1: Occipital Lobe stores visual memory.

What does Grandpa’s voice sound like?
File cabinet #2: Primary Auditory Cortex within the Temporal Lobe.

What emotions have I attached to my sister over my lifetime?
File cabinet #3: the Amygdala.

What is my husband’s name?
File cabinet #4: Temporal Cortex.

Have I had any unpleasant or traumatic experiences with an individual, place or event in my life?
File cabinet #5: Anterior Cingulate Cortex.

What did my first boyfriend smell like?
File cabinet #6: Lateral and Medial Orbitofrontal Cortex.

So, when your loved one begins to display problems with recognizing you, or remembering your name, due to their Alzheimer’s, the problem may be that the disease has disrupted or destroyed the neural circuitry that runs between the Hippocampus and a specialized storage area.

Examples might sound like these.
“Today, my wife dropped in to see me. At least she looked like my wife, however, the voice that was coming out of her sounded different, like it was somebody else. Was it really my wife Darlene, or was it somebody else?”

“Last night, a caregiver told me that my grandson came to visit me. He sounded like a little boy that I knew, but I could not place him by the look of his face. He also seemed to smell different from my little Billy. I could not tell who that child was.”

“My husband came to visit me in my room yesterday. He brought in a bouquet of yellow roses with sprigs of lavender, both of which have always been my favorites. But these seemed artificial to me; I could not detect a fragrance from them at all. The smile on his face turned sad when I thanked him for the nice artificial floral arrangement. They had no scent to me at all.”

The mechanics of how our memories are formed and stored is amazing. For far too long, we have remained ignorant or taken for granted how marvelous a gift our brain is and how it serves us. Take the time to learn more about how the brain works. It will also provide you with a greater appreciation and compassion for your Alzheimer’s stricken loved one.

We lucky folks who do not have Alzheimer’s sometimes get wrapped up in our personal vanities by expecting recognition of ourselves each time we encounter our loved one fighting with AD.

Give them a break. Your loved one can no longer be held accountable for that which they can no longer deliver, express, convey or hold in their mind. They are under attack and siege and putting up the best that they know how. The focus of attention should be all about them, their comfort and their feeling of being loved.



Jeff Dodson
October 6th 2010

Ramping Up Investment In Alzheimer's Research

In the September 21st 2009 online issue of Roll Call, Harry Johns, President and CEO of the Alzheimer’s Association, penned an article entitled, Fundamental Health Reform: Investing in Alzheimer’s Research.

Mr. Johns article brought to light the inadequate level of current funding for Alzheimer’s. In essence, our governmental research funding at present does not come anywhere near to matching the impact that this disease is having upon our society.

The article cites federal statistics that recognize that AD now kills as many people as diabetes. It also kills more people than breast and prostrate cancers combined.

The Alzheimer’s Study Group determined that AD will cost US taxpayers $20 trillion in Medicare and Medicaid costs over the next 40 years. This is just the start of how it will be if we do nothing different than we are doing now and remain complacent.

The 2010 budget provided by the National Institute on Aging (part of the National Institute of Health) for Alzheimer’s research is approximately $428 million. According to Mr. John’s article this amount represents an investment equal to $1.39 per person in America. By comparison, $8.60 on average has been invested over the past 30 years on each American for cancer research.
As a result, in 2006, survivorship from cancer had reached 10 million people, and, for the first time since being recorded, annual cancer deaths had actually fallen.

A new national poll conducted by USAgainstAlzheimer’s revealed that 88% of our registered voters say it’s important to make Alzheimer’s Disease a priority, even with the budget deficit we are facing. An equally amazing number is that 77% of those Americans polled say they have been touched by AD.

Where would we be today in our fight against AD if a sum comparable to that which has been invested in the fight against cancer had also been directed towards understanding AD causation, prevention, and a cure? The imperative before us now is simple. Research expenditures for both the private sector and our government must increase now along with a top down federally coordinated mission-driven organization.

Our 111th Congress is sitting upon two bills dealing with Alzheimer’s Disease. Combined, they address the issues of dramatically improved funding, prioritized research and informational sharing. A summary of the highlights of each bill is being provided here.

Alzheimer’s Disease Breakthrough Act of 2009. (S.1492 and HR 3286)
Sponsored by Senator Edward Markey (Dem - MA) and 136 cosponsors, this bill was introduced on July 22nd 2009. This bill includes the following action items.

1. A doubling of National Institute of Health funding for AD research.
2. Priority given to AD research.
3. An AD disease prevention initiative.
4. Accelerated Clinical research.
5. Enhanced infrastructure for implementing clinical prevention and medication trials.
6. Facilitate the clinical trial enrollment process.
7. Earlier diagnostic research.
8. Research on AD disease services and care giving.
9. Calls for a National Summit on AD 3 years after enactment.
10. A stepped up AD public education campaign.

National Alzheimer’s Project Act, or NAPA. (S.3036 and HR4689)
This bill was sponsored by Senators Evan Bayh (Dem -IN), and Susan Collins (R - ME) on February 24th 2010. This piece of legislation includes the following action items.

1. Establish an Office position for AD within the Health and Human Services administration.
2. Accelerate treatments to prevent, halt, and reverse Alzheimer’s Disease.
3. Responsible for the creation and maintenance of an integrated national plan to overcome AD.
4. Coordinate the health care and treatment of citizens with AD.
5. Ensure the inclusion of higher risk ethnic and racial populations in the receipt of care, research
and the participation in clinical trials.
6. International coordination.
7. Provide information and coordination of AD research and services across all Federal agencies.

With the timely involvement of Maria Shriver and her Shriver Report: A Woman’s Nation Takes On Alzheimer’s, interest and support for the passage of both of these bills in Congress should be ignited along with a nationwide dialog about AD.

Nearly 150 of our nations leading researchers believe Alzheimer’s can be stopped by 2020 provided that both sufficient funding is extended along with a coordinated top down national mission oriented strategy. The passage of both of these pieces of legislation are a step towards the funding and top down national strategy that our researchers set forth as investment requirements for stopping AD by 2020.

The time to act is now!


Jeff Dodson
October 20th 2010

Where Do We Stand With Alzheimer's?

Where do we stand with respect to this fatal neurodegenerative disease? How much is it costing our society monetarily? How close are we to putting the brakes on to slow its destructive march? These are a few of the questions I have regarding what’s going on with Alzheimer’s Disease.

The very latest investigative report on what AD is costing our society globally is now out.

The Worldwide Cost
The World Alzheimer’s Report 2010, published by Alzheimer’s Disease International, and just released on September 21st 2010, reveals the gargantuan size and scope of this disease to all of us. Listed in the Conclusions and Recommendations section of this report are some sobering statistics.

1. If dementia care were a country, it would be the world’s 18th largest economy, ranking between Turkey and Indonesia.

2. If it were a company, it would be the world’s largest by annual revenue exceeding Wal Mart (US $414 billion) and Exxon Mobil (US $311 billion).

3. According to the World Alzheimer’s Repot 2009, 35.6 million older people worldwide (around 1/2% of the world’s total population) live with dementia. By the year 2030, this number will increase to 65.7 million.

4. Alzheimer’s Disease International calls on governments to make dementia a health care priority and develop national plans to deal with the disease.

A Discovery Made Created An Opportunity That Was Lost
It has now been 103 years since German psychiatrist and neuropathologist, Alois Alzheimer, was credited for the diagnosis of what he called pre senile dementia in a middle-aged patient. The patient, Auguste Deter, had been housed in the Frankfurt Asylum for lunatics and epileptics when Alzheimer met her in 1901. From 1901 until 1906, Alzheimer was obsessed with the behavior that she exhibited and studied her until her death in 1906. In November of 1906, he gave a speech in which he presented his findings of pre senile dementia after concluding an autopsy study of the patients’ brain.

In spite of Doctor Alzheimer’s landmark discovery and work, the field of medical science and neurology basically squandered the next 50 years and did virtually nothing to further explore and extrapolate upon Alzheimer’s findings. Our collective ignorance as a society regarding the brain and the difference between a healthy one and a diseased one advanced little during this time period. When some people aged into their 50’s and 60’s, senility was presumed to have set in causing, what was referred to as, “becoming feeble-minded”. Senility, as it came to be viewed, was part and parcel of becoming old for some senior citizens.

As a child and adolescent, I can recall some older people and a few relatives being referred to as “addle-brained”, an old “shut-in”, or one that “lives in his own private world”. Older folks, suffering from as-yet-to-be-defined variations of dementia, were basically just closeted away at home, or packed off to a nursing home and written off.

It really wasn’t until the early 1970’s that Alzheimer’s Disease research developed the equivalent of a vehicle transmission and began to gain traction up to perhaps a walking pace.

Another 20 more years would then pass before AD research, clinical trials, and both government and private sector grant money would all start to pick up the pace.

Gaining Momentum
Between 1990 and the present we have begun to see noteworthy involvement of medical science, a substantial increase in clinical trials, governmental and private sector research funding and greater public awareness. The death of a popular former president, Ronald Reagan, movie actors Charlton Heston and Rita Hayworth, and other public figures have helped raise societal interest and involvement to a higher level of participation.

As of October 2010, we have only 5 FDA approved medications available for the treatment of Alzheimer’s. Those medications are: Aricept, Razadyne, Namenda, Excelon, and Cognex. The newest of the group, Namenda was approved in 2003. The oldest drug, Aricept, was approved 17 years ago in 1993. NONE of these current medications will substantially slow down the progression of this fatal disease. There are NO preventative NOR any curative medications available at this time to fight and counter AD.

On the other hand, there are over 100 clinical trials underway at present with 4 promising medications that have made it to a Phase III clinical trial. Those medications that successfully survive a Phase III trial and the followup study stand a 90% or better chance of making it to market. The 4 drugs are: bapineuzumab (AAB-001), gammagard, resveratrol, and , solanezumab (LY2062430).

Early detection and screening measures have shown promising results with PET scans, blood and cerebrospinal fluid biomarker tests, and retina scans. The biomarker tests and retina scans in particular have generated excitement for their ability to disclose the presence of what scientists call a “pre-Alzheimer’s condition” 10 to 15 years before the AD symptoms start to be noticed.

A substantial amount of research has been done with more on the way at investigating dietary risk factors. Researchers have found compelling evidence of how certain metals such as iron, copper and aluminum and fertilizer derivatives such as nitrates and nitrites may be major environmental contributors in the progression of Alzheimer’s.

Ignorance and Misinformation
Yet ignorance, myths and misinformation remain entrenched worldwide about AD. The same World Alzheimer’s Report 2010 found that several common misunderstandings about Alzheimer’s Disease and dementia still exist globally that include these beliefs:

1. It is not a very common problem.
2. AD is a normal part of aging.
3. Nothing can be done, families will provide care - it is not an issue for health care systems or for governments.

These misguided notions are reminiscent of the beliefs that existed between 1905 and the early 1970’s. Where education is absent and ignorance prevails, either no action or the wrong actions will be taken towards combating AD. Clearly, education about AD needs to be ramped up immediately.

Driving Change
The Alzheimer’s Association has been a primary driving force in lobbying congress and the the National Institute of Health for increased research funding. It works with the private sector and the general public in an effort to keep donations coming for additional research project grants.

On October 15th 2010, Maria Shriver is joining with the Alzheimer’s Association to release the Shriver Report, A Woman’s Nation Takes On Alzheimer’s. This report will be the first multidisciplinary approach at the impact of AD, the costs, the burden upon family and cargivers, and current medical research and breakthroughs. The Shriver Report will also feature a wide variety of professional entertainers, political leaders, and news correspondents. The Shriver Report is intended to ignite a national dialogue on the epidemic disease of AD.

An Action Plan From Out Of The Past
A multidisciplinary, mission driven approach to the challenge was the kind of force employed in the phenomenal World War II “Manhattan Project” which led to the creation and detonation of the world’s first atomic bomb. This remarkable achievement was executed on a timeline between 1942 and 1946 with an approximate budget of 2 billion dollars (22 billion dollars at present day rate).

The World Alzheimer’s Report 2010 has brought to light the severity of the costs and growth of this disease. A new case of AD is diagnosed every 70 seconds. The time for a dramatic increase in public and global education, funding for public and private research, and caregiving relief with insurance reform and change is now.

Perhaps now is the right moment to shake off the dust of time and revisit the top down organizational methods of the “Manhattan Project.” Utilize the how-it-was-done template as a present day vehicle for first bringing AD to a screeching halt, then a follow up knockout punch of finding a cure.


Jeff Dodson
October 12th 2010

To Forgive: The Right Choice To Make

To forgive. This is what every religion in our society teaches its followers. Two current dictionaries provide the following definitions.

The Oxford Online English Dictionary defines forgive as follows.
“To stop feeling angry or resentful towards someone for an offense, flaw or mistake, or to cancel a debt.”

The Wikipedia Online Dictionary offers the following definition. “The process of concluding resentment, indignation or anger as a result of a perceived offense, difference or mistake and/or ceasing to demand punishment or restitution.”

Here is what a few notable individuals in our society have had to say about forgiveness or the steps they took to extend it.

In his book , The Seat of the Soul, author Gary Zukav had this to say about forgiveness:
“Forgiveness means that you do not carry the baggage of an experience. Forgiveness means that you do not hold others responsible for your experiences. When you forgive you release critical judgment of yourself as well as of others. You lighten up.”

Mahatma Ghandi offered this opinion about forgiveness:
“Forgiveness is a quality of the soul, and therefore, a positive quality”.

June Hunt, who hosts the long-running radio broadcast, Hope In The Night, wrote a book about the positive and liberating effects of forgiveness entitled, “How To Forgive...When You Don’t Feel Like It.”

The globally known song, Amazing Grace, was adapted from a hymn authored by English poet and clergyman, John Newton in 1779. The hymn, penned by Newton, contains a message that forgiveness and redemption are possible for all those who have wronged or harmed others. In his early adult years, Newton participated in the maritime slave trade. In the midst of a harrowing storm upon the high seas, with his ship in danger of capsizing and sinking, Newton prayed for forgiveness and redemption for all of his sins and transgressions. Thereafter, Newton felt as if a great burden had been lifted from his shoulders. God, in Newton’s eyes, had forgiven him for his sins and mistreatment of others.

To forgive but not forget?
Many folks take a stab at forgiving in this fashion. Call it forgiving with a booby trap. They convey that they are no longer sore or angry over the offense, and they accept your apology, but, they want you to know that you are still not off the hook because they will never, ever forget the incident.

One example here might sound like this.
“We’ll, I sat down with Uncle Harry and told him to his face that I have forgiven him for breaking my heirloom porcelain serving tray; the one that belonged to my great grandmother. Told him that I accepted his apology from 3 years back, but that forgetting it was out of the question.”

Another example might be this one.
“My husband went out shopping at the mall in my new BMW. He wrecked it on the way home after running a stop sign. It took me 10 years of saving up for the down payment on that car. That was my dream car. I have told him that I forgave him, but I damn well won’t forget it!”

Finally, one more example might sound like this one.
“Joey stole my new bicycle when we were both just 10 years old. 3 days later, his mother made him bring the bike back to me and apologize to me and my parents. Dad made me accept his apology and forgive him, but I never really did. For the next 10 years, anytime I saw Joey, I made it a point of telling whomever was nearby, there goes Joey, the bike stealer.”

In the examples here, true forgiveness is not being offered. What is being extended is another attempt to manipulate the feelings of the alleged wrongdoer. The one who is forgiving , by not forgetting the situation, is telling the other party, they are still interested in obtaining their pound of flesh; that an indeterminate grudge is still being held. The bonfire of pain, anger and resentment continues to be stoked and maintained.

Why should I choose to forgive those who have wronged me?, you say.
I suggest three reasons for committing to this particular choice.

First, it has a restorative effect upon my sense of well being. I have made the willful decision to stop letting a circumstance of the past dictate how I conduct myself in the present moment as well as the future. I liken it to removing a blacksmith’s anvil out of my hiker’s backpack. Imagine how much easier my climbing pace and posture will be!

Second, it ends the feeling of pain; very much like the removal of a pesky and painful deep wood sliver. The site of the wound always feels so much better a couple of days after draining away the toxin from infection along with the offending foreign object. A transition from a disease state to a state of being at ease.

Third, it empowers and strengthens me. The element of control in my life is restored to me. I made the choice to stop defining how I was living based upon an accident, a crime, or misdeed visited upon me by another. Control over me by some past event, person or circumstance would now be extinguished.

What Forgiveness is not.
Forgiving does not mean that you eagerly choose to renew or strike up a relationship with the person that originally trounced upon your feelings or otherwise victimized you. To forgive does not include sitting down with former offender “to break bread over a meal with them.” You do not have to involve yourself any further, nor in any manner.

To forgive means to let go, put it to rest, and put it behind you. Retake responsibility of your own reactions to circumstance.


Jeff Dodson
October 5th 2010

Your Pantry of Caregiver Skills: Seven Crucial Ones To Have In Stock

Are you currently involved in or soon to be a caregiver for an aging parent or family member with dementia or Alzheimer’s Disease?

If you are not yet one, but anticipate that you will be, then now is the time to start preparing yourself for the challenge. According to statistics offered by the National Institute on Aging (part of the National Institute of Health) in the fall of 2009, there were over ten million caregivers in the United States involved in providing care to dementia and Alzheimer’s Disease patients.

Success as a caregiver and the ability to manage the stress that it generates demands that certain skills be present or developed. I am relatively new to caregiving, having become a practitioner since 2004 with members of our own family. In these six years, I have found that there are seven crucial skills or foundation attributes that are common among thousands of successful caregivers.

1. Patience.
As a caregiver your best laid daily plans for your patient or loved one will not always survive the end of any given day. At times, those best laid plans of yours for Mom, Dad, Grandpa, or non-family member crash and burn right at the start of your day or care shift. Why? Several reasons.

First, because their illness and the physical pain and discomfort that accompany it act as a major distraction to staying on task or following what you are asking or expecting them to do. Second, because your patient no longer possesses the same sense of urgency to accomplish a task as you do. Third, because they may not also be able to move as fast as they used to. (Rheumatoid Arthritis may be present too). Cognitively, they may now easily loose track of not only what you are encouraging them to do, but how to do it as well. Dementia may be present, and, like battery acid, can corrode away the cognitive battery terminals. Self-awareness fades from the scene.

Contending with all of these distractions requires that you adapt to a new set of coping skills,and, to frequently draw from a freshly dug deep well of patience.

Before becoming a caregiver to members of my family, I had prided myself as a successful business supervisor: having disciplined myself over many years to be punctual or early, to multitask and work both efficiently and productively, and stay with a task or project until done. The words, tenacious, driven, possesses a strong sense of urgency, often appeared in my annual performance reviews'. I was known as the driving guy that “attacked” my work or special assignments and was known for delivering results.

So for me, early on, I felt like a revved up, tire smoking NASCAR racer trying to navigate through a pedestrian mall chock full of shoppers with no where to go and all day to do it. I was piloting the wrong kind of vehicle for the obstacle course at hand. Time for an adaptive change up before I drove myself nuts and my stress level went through the ceiling. Slowing down and scaling down my expectations and goals to better match the pace of my family member was a hard challenge, but one that I eventually became competent at. It took me all of two years to make the kind of transition I felt good about. At least my tenacious quality served me get me to this level.

Now, my proverbial well to draw patience from has been deepened from a shallow six-footer to three hundred foot plus! A modest reserve of patience is now in place for those drought days.

2. Rhinoceros Skin or Medieval Armor.
As our seniors grow older their daily concerns seems to shrink down to the following “hit-parade” of just six topics: bowels, bladder, canes, medications, doctors, and walkers. Basic concerns of grooming, appearance, housekeeping, and hygiene seem to no longer be on the radar. As a caregiver, your efforts at persuading, assisting, guiding, cleaning and tidying up with these concerns will often provoke and annoy your patient to sudden outbursts or accusations.

Some of the more popular ones go like: “Where did you put my pills,” or, “I can’t find my cane." " Where in hell did you hide it?", or, “Why do you always rearrange my stuff?, now I cannot find a damn thing!” Still more defiant remarks can sound like these: “This is my damned house, not yours, stop trying to move everything around and confuse me!”, or, “Stop bossing me around, just go home and leave me the hell alone!”

Since neither rhinoceros hide jackets nor a complete suit of medieval armor are available at your local “caregiver supply store”, you must compensate and “armor up” yourself in a different manner.

Remind yourself each day before beginning your caregiver assignment: my patient or family member is ill and hurting, they don’t mean to be hurtful towards me and what I do for them.

Remind yourself each day that the decline or absence in former good judgment and reasoned out choices on the part of the patient is not willful and has nothing to do with any attempt to piss you off or get under your skin. Your patient does not wake up every day with the singular notion of how they can upset or belittle you.

You must find a way to get comfortable with not hearing a lot of thank-you responses. The old saying is true: “People tend to take for granted the services of those that they count on the most.” Your good work as a caregiver IS NOTICED by your patient. The problem is just that their declining cognitive skills interfere with more frequent and mindful notice by them of all that you do each week.

3. A good sense of humor.
Find a way to laugh at yourself. Find a way to see some of the humor in what comes up in your daily care of your patient or family member. The humor that you find in what happens with them is not to serve as a means for belittling or mocking the symptoms of a disease that they did not ask to befall them. A good laugh or two, shared each day with your patient, serves to lighten up both their stress and yours.

I find humor in the multitude of places that canes are tossed, thrown, or left behind. I find humor in the many locations that a mishandled pill, tablet or capsule winds up.

I find humor in discovering that a pair of cucumbers were placed in a lingerie drawer or that a camisole was folded carefully then placed in the vegetable crisper.

I find humor even when I discover that the walker or wheelchair I am putting away had fresh dog crap smeared along one of the wheels, and is now smeared within the palm of one of my hands.

4. Positive attitude.
The glass is half full, not half empty. Bad times, just like the storms or heat waves Mother Nature sends us, do not last forever.

The struggles your patient is having in getting dressed today, or perhaps remembering to take their medications will not necessarily be the same problems that arise tomorrow. There will be other problems that pop up, but not always the same ones. Take them in stride.

So what if Mom insists on wearing the same pantsuit outfit every time she goes in for a doctor’s visit! So what if a family member always insists on rummaging through her purse every time she rides in your car with you! Stay positive. As long as their content and relaxed, each of these incidents are really just small matters.

5. A willingness to learn,
Investigate and keep up to date on the medical condition your patient has been diagnosed with. Call it a little child’s curiosity. Medical science, particularly microbiology, cell science, genetics and nanotechnology are progressing at a staggering pace. New medications and drug therapies are being developed and written about every day. It is encouraging and uplifting to follow what is coming in the future. There are many medical information web sites that you can subscribe to for free and receive daily or weekly e-mail updates of the most recent discoveries and drug trials.

6. A channel for your frustrations.
Whether your hobby is gardening, crocheting, going to bingo, crocheting, bicycling, ballroom dancing, painting, crossword puzzles, mud wrestling, photography, an hour at the shooting range, or even a couple of fun hours on Facebook with friends, children and family members. It doesn’t matter what the hobby is as long as you can derive both an enjoyment out of it and an escape into it.

I am fortunate in that I enjoy the multiple hobbies of gardening, carpentry, and now blogging and writing about the challenges and rewards of caregiving.

Your hobby will act as a counterbalance to the stress of caring for a family member or another patient.

7. Prepare to be adaptive.
The behaviors and demands of your patient will change over time rather than remain constant. You will need to anticipate this and be ready to adapt and adjust your approach when you notice a change. You don’t have to like change but you do have to realize that it will happen and be ready for it. It is a mindset change of shifting from reactive (response to an event after the fact) to pre-active (a game plan in place before the event occurs).

I had to change my own problem-solving approach from the use of a professional 30’’ loggers chain saw to that of a manual coping saw. A change of situation called for a change in the skill tools I was employing. Still cutting problems down to size, but with less speed and frenzy. My adaptive caregiving pace could now be described as much slower but proceeding with steady diligence. Fingernail clippers work nicely for grooming one’s nails whereas a gas powered hedge trimmer would cause a bit of a stir. Find the right fit, the right skill and the right tool. It took me awhile, but I did it.


Jeff Dodson is a Alzheimer’s/Dementia caregiver
and caregiver advocate who lives and writes out of Elk Grove, California.

He is reachable on MySpace and Facebook and can be e-mailed at:
www.imaginatic@frontier.com, or, visit his Blog at www.nvlwtrdodson.blogspot.com

The Shriver Report™, A Woman's Nation Takes On Alzheimer's

The Shriver Report™, A Woman's Nation Takes On Alzheimer's

Shackled Heroes

Our earliest memories of them are always pleasant and warm. A faint recall of gazing up at one of them while being cuddled and put to sleep in a crib. Being held by the other while hungrily draining down a bottle of formula in a bottle. Cared for and nursed with homemade remedies while home in bed with the a cold, the flu or one of the many childhood illnesses. Holding hands with one for reassurance as you were escorted along for your first day in Kindergarten. Remembering that huge birthday cake they honored you with at age 2 when you were ensconced in your highchair; their faces glowing with expectation and smiles. The bonding was mutually desired, pursued and relished.

In looking back, our parents made the conscious choice to begin a family, raise their children and make a lifelong commitment to nurturing, supporting and caring for each child that was planned as well as any that came along that were not.

While in their teens and twenties, the lives of our parents were all about dating, finding the right partner, settling down with them and beginning productive careers. They fought, they quarreled they disagreed at times with a passion; but they always knew how to make up, make peace and get back upon their shared journey. Some of their children began to arrive on the scene even at this early age. Nest-building had begun.

As mom & dad entered their thirties, it was about finding a home they could finally afford to purchase and move into; saying goodbye to that old apartment or rented duplex. They started to grow roots in their neighborhoods, and roots in their business careers. They modeled what a good neighbor, what a good citizen should be like with all of the other parents and kids on the block. Their own children sprouted and grew swiftly, making friends and growing into early adolescence.

The decade of their forties, saw mom & dad move us into a larger, grander home. Lots of pictures to be taken as we attended, then graduated from high school while gearing up for college or a solid trade school. Mom & dad were there for us, cheering us on through homework, finals, graduations, SAT’s, etc. At times, they looked tired, run down from their work, maintaining their home, raising us kids, and sometimes neglecting their own health. Nest makeovers and replacements were underway. Some fledging of the kids had already begun.

With the promenade through their fifties, new challenges arose for our parents to contend with. A bout with breast cancer for mom, maybe a scare of a prostrate tumor for dad, or a heart bypass operation. Through all of these struggles, they remained first and foremost, loving parents; engaged with and proud of each of their children for their accomplishments, and their with words of encouragement and balm when you fell, tumbled or were ejected from your saddle. The parental vows of long ago: to love, nurture, mentor and advocate their young were still being followed to the letter. The nest has been empty now for some time, with just mom & dad to meander through it and reminisce.

The decade of their sixties brought to reality, long-awaited plans and the joy of retirement, more time with the grandchildren, work with their favorite charity, part-time consulting, small building projects, etc. As they passed through their sixties, physical and mental abilities, once stalwart and reliable, now began to slow down, falter and sometimes not work as once before. And still they continued in delivering up instinctive and intuitive loving parenting skills to their kids, grandchildren and to some of those newly arriving great-grandchildren.

For many of us with parents now in their seventies or eighties, a turning point junction has now arrived. Our parents, our “heroes” who sacrificed, scrimped, and gave all they had to their children for the past 50 years or more now require our urgent help and give back.

Our “heroes” are now shackled by a variety of infirmities, physical ailments and cognitive decline. Canes, walkers, “Depends” and hearing aides are all now octogenarian accessories. But our parents, our heroes need more than just these devices. They need our active presence, our weekly involvement with their care and welfare, whether in their home, at the assisted living place, or, down at the nursing home.

That turning point place means it is time to give back, time to reciprocate, time to step up and extend back to mom & dad what they have unconditionally provided to us for over half a century. Time to put on, button up and tuck in that warm wool Pendelton known as becoming a Caregiver for your parents. It is a completion and balancing of the process of Life. Time for attending to and caring for our Shackled Heroes.

August 1st 2010


Jeff Dodson is an Alzheimer's and Dementia Caregiver Advocate.
He lives and writes in Elk Grove, California.
Visit his Caregiver Blog at www. nvlwtrdodson.blogspot.com
or e-mail him at: www.imaginatic@frontier.com

Alzheimer's Reading Room: What is it like to be an Alzheimer's caregiver? Kathy

Alzheimer's Reading Room: What is it like to be an Alzheimer's caregiver? Kathy

Your Own Internal I-Phone

I-Pads, I-Phones, PDA’s, Droids and Blackberry’s, are just some of the amazing and wildly popular gadgets that provide us with access to the voices and thoughts of friends, family and work.

Prior to the planned release of each new product, there are video teasers, buzz and hype: all generated to ensure a pent up demand for the product. Folks then will themselves to stand in line for hours or even camp out for a shot at being one of the first to take ownership of one of these marvels.

The rush is then on, via one of these devices, to connect, re-connect, or to stay connected externally with others in faster, more colorful, or more adaptive ways.

But what of that internal high-speed wireless extrasensory device we all came equipped with when we arrived here? I’m referring here to what has come to be known as our own inner voice. That inner voice is your original equipment manufacturers perpetual intranet connection between your Spirit and that higher power we associate with a Universal Divinity.

What if we changed the way we viewed the manner in which we stay connected?

On the one hand, we have our very popular external man-made physical products. We crave them because of what they allow us to do. On the other hand, we were all born with a capacity, a gift which we mostly ignore, that offers us a connection. How might are lives be different, perhaps enhanced and enriched if we chose to assign a higher priority to focusing on and consistently accessing that inner voice? That inner voice is our own very unique and personal guidance signal, that once locked onto, will unfailingly serve to guide each of us upon the path we were all meant to follow before we came here.

Learn to tune into and follow that inner voice. Eliminate all of the external noise and visual distractions you allow yourself to be bombarded with. Make an affirmative effort to seek out or create quiet times to zero in on it’s frequency. That voice speaks to you as a soft whisper.

We all were equipped with this feature at birth. In my humble opinion, perhaps one hundred out of every 10,000 people know how to both tune in to their inner voice and willfully follow it’s directives. It is simply connecting with our spiritual selves, to follow and match up our personalities, behaviors and goals with the life’s work that we came here to do.

Choose now and choose today to reestablish your connection with your own private and spiritual I-Phone! You will never hear that inner voice proclaim things like: server error, unable to establish a connection, or, too many requests due to high volume, try again later.


Jeff Dodson
June 30th 2010

Don't Give Up On Me: I'm Still Here!

The thought occurred to me of what it might feel like to be in the shoes of an person residing in a nursing facility having been diagnosed with Alzheimer’s. How might if feel from their point of view when family members, doctors and caregivers visit and attend to them? So I closed my eyes and imagined what it might be like in a few different scenarios.

The intention here at the outset is not to mock, belittle, trivialize or devalue the feelings of what an AD patient must endure, but to turn a spotlight upon some of those experiences which they must put up with.


“You think I cannot understand you but I can!”

“Each week son, you come in to visit me. You always say hello and your body language tells me that you have a genuine concern. But invariably, as soon as that resident CNA stops in the room, the two of you start talking about me in my presence as if I were nothing more than an old wheelbarrow with a flattened tire. I may not understand all of the words that you say anymore, but I can damn well understand your body language and that woman’s tone. The both of you talk about me in my presence like I am not even here. It feels outrageous, hurtful, insulting and crushing! If I could say it to the two of you, it would be, ‘shame on the both of you, and by the way, you can both go to hell,’ that’s what I’d say.” ---William Bellamy


“You think that I am soundly asleep and oblivious to the world but I am not!”

“My wife always makes some noise or commotion when coming down the hall to enter my room. Whether it’s the jangling of her keys, or the scuffing sound of her right shoe on the floor, I know that it’s her coming. So I quickly close my eyes as I fall back upon the pillow to feign sleep.

Why do I do this you ask?

This is my way of avoiding seeing her looks of pity rather than empathy as she gazes down upon me. She’ll draw up a chair at the foot of my bed; never close up near me, then pulls out her darning needles to knit and work on a garment while she sits there.

I sneak a furtive peek at her through my squinted eyes. The look on her face betrays the fact that she is relieved that I am sleeping. Relieved that she doesn’t have to make an effort to engage with me in anything meaningful. Relieved that she doesn’t have to enter Alzheimer’s World on this visit today. It is obvious to me that she doesn’t feel comfortable coming and she always keeps her distance. We have been married for 40 years. Has she already written me off and not worth the effort to try and reach anymore?” ---George Steinmetz


“The grandchildren are not afraid of me, yet you believe otherwise.”

“You bring in my grandchildren but hold them back from the side of the bed, not allowing them contact or a closer presence. Why the hell not? Children are observant and honest little souls with curiosity that often overrides apprehension. Let them come up to me, let them talk to me, let them hold my hands, for they will accept me as I am and love me as they find me. If I were to die today, I could find peace alone with just these sweet grandchildren each clutching one of grandma’s wrinkled old hands. My grandchildren are merely curious, concerned, wanting to stay connected to their grandparents. Why do you deny them a part of what life, loving and dying is all about?” ---Bessie Archibald


“The doctor always makes his rounds to see me; he just doesn’t connect with me.”

“My doctor comes to see me once each month. He comes on Saturday mornings before his golf games. This I know because he’s dressed in his blue polo shirt and tan hat perched upon his head. I get a perfunctory and insincere hello, then a few pokes and prods. He jots down a few notes on a clipboard. I try to speak and verbally respond, but it takes me some time to compose my sentences. The doctor smiles and continues with his writing, not looking back up at me to hear me out. I wish I could speak clearly and with better pronunciation than I do now but this goddamned disease has robbed me of that! The doctor gives me one more glance then strolls out the door and down the hall to his next patient. He has six more AD patients like me to see on this floor before he leaves for his golf game. I will see him again next month. The routine and lack of warmth and patience is always the same. I am not a human with feelings and dignity to this doctor any more. Just a source of billable time to Medicare." ---Floyd Dructor


“She’s preparing to leave me, but I see all of it unfolding.”

“My girlfriend comes to see me now just once a week. A pattern of disengagement has already begun. I have sensed and watched it as it has unfolded. It breaks my heart and spirit, yet I cannot put together the words to tell her how I feel.

I once enjoyed her closeness, her kisses, her words of encouragement. There were sometimes tears, but lots of her pretty smiles with those cute pink dimples. Now, she sits further away from me; as if I smell. She brings or holds things now in her hand like her purse to avoid extending a hand out to hold onto mine.

I was diagnosed with early onset familial Alzheimer’s just 2 years ago. We had gotten together a year before my fateful diagnosis. I am 37 and she is 34. She cannot accept nor cope with what has happened to me. In the 3 years that I have had my AD, I’ve had to be placed in a care facility about 4 months ago. The first two months, she came to see me every day. Then last month, her visits began to occur less. I have accepted my fate, but I am not dead yet. Her behavior tells me that she has given up on me. I love her, yet she is in the process of casting me adrift in a Titanic lifeboat. I am still John Smith! I am still here. Don’t give up on me!" ---John Percival Smith

A Lesson to be learned.
Learn how to enter and live in Alzheimer’s World. You have the ability to do this. Your loved one who has this disease is locked within the dark fog of this realm and cannot leave. Don’t give up on them because they now inhabit a strange land. Learn the language and customs and take periodic safari’s to that land. Your loved ones deserve this act of courage and bravery on your part.


Jeff Dodson is a blogger and an advocate of Caregiving
and topics involving Alzheimer’s Disease. He lives and writes
out of Elk Grove, California. He is also reachable on MySpace
and Facebook. E-mail him at: www.imaginatic.com/

Unwanted Caregiver Baggage: Anger & Rage

In a previous blog post entitled “The Job You Never Volunteered For”, the circumstances in which one member of a family often winds up being the sole provider of all of the caregiving needs to an adult parent was touched upon.

The emotional feelings that accompany being “tagged” as the caregiver while all of your other capable family members flee the scene boil down to just two: anger and rage.

Anger is felt and simmers away over the fact that there was no democratic round table discussion of how care was going to be dispensed and shared in caring for mom or dad, and, the manner in which all your other siblings and relatives fled the scene and “went dark” (became invisible to radar). What made them all think that I was going to be absolutely ecstatic over the way I was ditched out on?

In time the anger simmers and grows hotter until it becomes an indignant sense of rage inside. Rage over the fact that not only were you left on your own to care for your parents, or patient, but that over time, none of your family members bother to check up on how you are holding up, send you a thoughtful card, or even surprise you with a drop in visit to take you out for lunch or coffee at Starbucks.

The voice in your head, at first faintly, then in time blaring away like a loudspeaker in a drive-thru lane keeps up with the comment: I’m ditched, I’m forgotten, I’m damn well screwed!

Those relatives and siblings that you encounter at any family reunions, (assuming your family still holds them anymore) express concern or sympathy for dear old mom, dad, or grandpa, yet extend nothing towards you in the way of extra help, respite care (filling in for you just once or maybe more often) or financial assistance for the myriad caregiver’s expenses that insurance doesn’t cover.

So the months go by and while you slowly adapt and become accustomed to most of your caregiving tasks, you are still silently stoking that blazing bonfire of rage inside. The problem is this: none of us were designed to retain a flaming blast furnace on the inside. Had each of us come with an Operator’s Manual at birth, nowhere would there be instructions about creating and maintaining such a furnace on our insides. All that heat and rage begins to corrode away at you.

Your immune system becomes one of it’s two primary victims, while the other one is your outward attitude. But before it really gets this far, the decision you must make is how and when are you going to jettison that furnace of rage?

While you may be one of the rare individuals who has successfully walked over red-hot coals once at an Anthony Robbins Weekend Retreat, you were never meant to swallow them down and hold them in your gut!

Ask yourself, what positive thing is the hot coal furnace doing for you? Answer: nothing good!

The solution is: let go of the rage, let go of the pain, let go of the frustration, let go of the hate. Do yourself a huge favor by choosing not to own it any longer.

Consider substituting the hot coal furnace with something pleasant and rewarding. Hell, why not? When you begin to think about it, what initially felt like a suck-ass gig; you have become damn well proficient and competent at! Just look at the skill sets you now possess. You’ve come a long way in overcoming the fear and trepidation in dispensing medications, giving injections, handling patient crying jags, mood swings, hostility, expertly folding, moving and dealing with wheelchairs, canes, Merri-walkers, portable oxygen units, glucose meters, etc.

You are a damned good and worthy person! That’s a fact.
You are appreciated by your patient that you are providing care for in more ways than they may show or say to you at times. You can assume correctly that you are high on the list of their daily prayers. You have prevailed and weathered through a tough storm!

It is a probable sure bet that any of the relatives that bailed on you way back when would not have survived and made the cut like you have. I’m not advocating substituting smugness here for rage. I’m advocating dumping the rage and get used to acknowledging and positively validating yourself at the end of each day for the caregiving work that you have come to dispense with.

Perhaps this blog should close with this suggested end-of-the-day affirmation for those who are Caregivers:

Thank You Heavenly Father for my health and strength.
Thank You for the courage and tenacity you have bestowed upon me to care for (relative’s name).
Thank You for allowing me to master the skills of a successful caregiver.
Tomorrow is a new day that I look forward to with your help in providing heartfelt service and compassion.
I am proud of what you have helped me become for the better.
I am strong and I will grow stronger as I let go of the negative energy I once held.


Jeff Dodson is a Writer and Advocate of Alzheimer’s Research and Caregiving.
He lives in Elk Grove, California.
E-mail him at: www.imaginatic@frontier.com
or his Blog Site at: www. nvlwtrdodson.blogspot.com/

Alzheimer's Disease: A Potential Cause May Have Been Detected

On Thursday June 10th 2010, The National Institutes of Health or NIH issued a news release entitled, Gene Linked to Alzheimer’s Disease Plays Key Role in Cell Survival.

Ralph Nixon, M.D., Ph. D., of the Nathan Kline Institute, and the New York University Langone Medical Center, directed the study which involved research in the United States as well as Europe, Canada and Japan. The study appears in the June 10th 2010 online issue of Cell. The study was also supported in part by the Alzheimer’s Association.

The study was also reported on in Medical News Today on June 11th 2010 in an article entitled Role of Gene That Causes Early Onset Alzheimer’s Revealed.

The news release reported that a study funded by the National Institute on Aging (NIA) has shown that the PS1 gene (Presenlin 1) is essential to the function of lysosomes, a cell component that digests and recycles unwanted proteins. Mutations of the PS1 gene have been linked with early onset Alzheimer’s.

Healthy PS1 genes activate lysosome enzymes in a process called autophagy, or the digesting of waste proteins. Autophagy is the cell’s main process of recycling cellular debris and unwanted proteins. These wastes occur naturally, but are overproduced in diseases such as Alzheimer’s and Parkinson’s disease. Mutations in the PS1 gene disrupt autophagy. This impairs the neuron
cells ability to rid itself of waste proteins such as amyloid fragments. The buildup of amyloid fragments and plaque are a hallmark symptom of Alzheimer’s.

Causation of Alzheimer’s Disease may prove to be the result of multiple factors, however, since a disruption in brain cell’s normal cleansing and recycling system appears to promote AD, focusing on a restoration of this process of autophagy offers a promising new therapeutic approach in bringing the disease under control.

At the present time, AD has been found to commence it’s silent attack within the brain cells as much as 10 to 15 years before the symptoms start to become readily apparent to the AD victim and their family members.

What if a gene therapy treatment could be developed that would correct both the mutations of the PS1 gene (causing early onset AD) and prevent the shutdown of the cell’s digesting and recycling process of waste?

This particular line of research is one to keep an eye on going forward.

From the Scene of the Mind: An Out of Control Slideshow?

An avalanche of information has been offered up that categorizes the fear, confusion, and befuddlement of the daily experiences of a person afflicted with Alzheimer’s Disease. Words such as confusion, fear, frustration and anger are commonly employed to describe what the AD patient feels or experiences.

My question, however, is this:
Where, if anywhere, has there been someone who has been able to experience the sensory and memory degraded episodes of an AD sufferer, who was then able to reasonably report back on what that vision, that feeling, that confusion was like?

Has there been say, a professional journalist or career reporter, trained in the observational and communication arts, that has firsthand experience with AD and been able to report back as objectively as they could what the experience actually was about?

“This is Rex Fury here, reporting live for KSUX news, on the scene at the corner of Hippocampus Lane and Dentate Gyrus Way. We have just learned of a wild uncontrollable Alzheimer’s memory crash event at this location. Details are sketchy and bizarre but this is what we know at this time...”

For those of us who are caregivers, doctors, nursing home staff, and just loving family members; what exactly is the AD patient feeling, seeing, smelling, tasting and experiencing? Has anyone with AD ever been able to come forward and concisely describe what one of their disruptive sensory / memory experiences is really like?

A family member of ours presently is struggling with mild to moderate AD. One day, I was surprised to hear this person begin to talk about what it is like in experiencing a confusing and frightening AD episode. It was just the two of us and we had been enjoying a private conversation about our family. After a pause, the individual then began to verbally describe a sensory image experience that often occurred at random throughout the day while they were awake. (I’m paraphrasing what was conveyed to me here).

“It is as if you are watching a slide show of events going on around you. Most of the scenes, the people, animals and surroundings are all familiar. Then, out of the blue, a slide pops up with altered scenery. The household furnishings look different. The person I was talking to in the chair across the room suddenly has a different face, or is completely different altogether. The slide show scenes just arbitrarily and quickly jump to something unknown, strange or scary. I cannot stop the slides from appearing as they do nor can I make them go away when they do pop up. Then, without warning, the slide images return to the normal, the recognizable, the comforting.”

As a member of the Baby Boomer generation, the experiences described remind me of the after effects for someone who had taken LSD. The person had “experienced a bad trip” after dropping a dose of LSD. Thereafter, the bad or negative hallucinations or visions would reoccur in the form of “flashback experiences” which were not controllable nor preventable.

Is it possible that the areas of the brain that we now know are affected by AD, were the same ones that were affected by those that took LSD some 40 years previously?

Up to this point in time, I had not heard first hand nor read anything from an AD patient that provided a description like the “slideshow” of how AD raises havoc with one’s cognitive mind and the way it’s sensory experiences are altered.

An out of control “Slideshow” such as what was described to me would certainly unnerve and unsettle anyone else who might have it happen to them. Having it happen to myself many times every day would certainly rattle me to the core.

I now have come to possess a greater appreciation and empathy for my family member and all others who struggle with this miserable disease. I now completely understand the frown and staring off into space look that often overcomes an AD patient.

I would be doing the same damn thing!

THE JOB YOU NEVER VOLUNTEERED FOR

While growing up and going to school, I never saw any classes offered on the subject of caregiving. When college recruiters visit high schools to promote their specialty majors, caregiving is not one of the offerings. When employment recruiters visit colleges or sponsor job fairs to attract talented candidates, caregiving is not one of the careers that is advocated or advertised. As of the present, May 2010, perhaps a handful of all of the companies doing business in the United States actually offer any kind of employee benefit that has to do with time off for caregiving duties.

In 2010, however, the demand for caregiving with all of it’s unique skills is becoming a big deal. Over the next 20 years it will grow into a substantial occupation and career path for both the unwilling and those that will come to chose it as a choice of the heart.

There is nothing glamorous, high paying or high profile about caregiving.

It does not receive the same kind of internet buzz of a sports or celebrity figure sex scandal. The latest YouTube video clip of something moronic, or sensational does not feature caregiving. The latest “Apps” for cell phones, texting devices and I-Pads offering nothing in the way of Caregiving instructions. (Maybe they should).

Caregiving is demanding, intense, exhausting, work that offers low or no pay without any benefits. Most of the time, your patient, charge, or family member passes away from either the disease they are suffering from, or complications from other failing health issues. Not many survivor success stories among caregivers to crow about or to look forward to.

It is a position that will extract a telling toll from the person engaged in delivering their efforts.

For many people, the job or role of caregiver fell upon them; and only just them, after the alarm klaxons sounded and the rest of the available siblings scurried like roaches for cover and darkness, to avoid the sharing of an unpleasant task. It was as if the unspoken instruction before the alarm sounded was: “Run like hell at the sound of horn, whomever is still standing at the scene after 10 seconds gets to be the caregiver.” The goddamn gutless bastards, is what the voice in your head then proclaims. This is not some childhood game of playing tag!

Yet for a sizable minority of those that are compelled to man-up or woman-up to the demands of caring for the needs of a sick and dying family member: there can be profound life-changing rewards.

First, you find that you really get to know your charge. Whether out of pain, a weak moment, or in developed trust, the sick person begins to disclose private thoughts, memories, hopes and fears to you. In short, you wind up becoming a confidante.

Second, you discover that you have become adept at reading and anticipating the moods and emotions of who you are caring for.

Third, you notice that whether you wanted to or not, you have developed a strong emotional attachment in the welfare of your patient.

Finally, you begin to realize that your patient may have come to value you at a level equal to or greater than any other member of their immediate family. Not because you intended it. Not because you initiated or contemplated any kind of manipulation game. It is because you are the one that has hung in there and stuck with them. When the enemy fire of their disease became intense and furious, you stayed in the foxhole right with them. They were not abandoned in the middle of a fight and plight. You remained as their companion. To serve and care for them.

Caregiving. The job that you never thought of volunteering for. All of a sudden, you felt the impact of it just like running into a fence post while out on a morning jog. The collision got your undivided attention.

The question is: how are you going to handle it and rise to the occasion? Will you choose to let it grind you down, or, will you choose to allow it to become a life-changing defining moment for you? Choose now and choose wisely!

Jeff Dodson

Jeff Dodson lives and writes out of Elk Grove, California.
You can reach him at: www.imaginatic@frontier.com
He and his wife Penny are devoted Caregiver advocates.
Or send him a message at My Space or Facebook.

WHAT I HAVE LEARNED ABOUT ALZHEIMER'S CAREGIVING

My name is Jeff Dodson and I reside in Elk Grove, California. While close to retirement, it is not a viable option just yet. Being energetic and in good health, it is my desire to continue working, while, at the same time following a long held passion of mine in writing. In this instance, I wanted to write about what is involved in providing daily care to family members stricken with Alzheimer's Disease. AD is not one of those diseases that brings with it a lot of excruciating pain such as cancer. On the other hand, it is one of the most frightening because it slowly and methodically destroys that which is most dear to everyone: their mind.

Alzheimer's Disease is present within both of my wife's family and my own. Because of it, my wife, Penny, retired from the traditional workforce five years ago and took on the responsibility of care giving with her family. I have continued working, but also joined my wife in sharing the care giving needs with her folks. In 2009 the health needs of my own parents compelled a more active involvement in assisting them as well as AD became more noticeable

with one of my parents.

The 2009 Report of the Alzheimer's Disease Association disclosed that there are over 5.3 million diagnosed cases of AD in the United States. The number of AD cases doubles every 5 years in people age 65 and older. AD accounts for 60 t0 80 percent of all of the cases of dementia. Age is the biggest risk factor associated with the disease. The California Disease Data Report on Alzheimer's for 2009 reveals that 11% of our nations caregivers or 1.1 million Californians are providing care for Alzheimer or other dementia stricken family members.

These are startling numbers, which will continue to grow as our population ages further. Presently, it is the sixth leading cause of death in the United States. Within the next 10 years, some researchers predict that it will surpass both cancer and heart disease on its way to the number one spot.

My wife and I count ourselves among the 80 million Baby Boomers born just after World War II. The first of our generation will begin turning age 65 in 2011. We count ourselves among the 10 million caregivers who are currently providing unpaid care to a family member or relative diagnosed with AD or another type of dementia. In our case, we provide the care that we can to our family members out of love, respect and devotion to them. I believe that the overwhelming majority of caregivers, active on a daily basis, are doing so for the same reasons as Penny and myself.

Taking charge of the health care and custody of a family member struggling with AD is a formidable challenge. For the person diagnosed with the disease, the prospect of slowly loosing bits and pieces of their cognitive abilities, their lifelong memories and, of not being able to form lasting new memories any more is terrifying and unnerving. In addition, that person can no longer communicate effectively to others about what is happening to them, what they are feeling, or what their wants and needs are. Over the centuries, the thought of "loosing your mind" to any tribe, culture or society scares the living daylights out of all of its members. It is no different in 2010.

In the time that Penny and I have been caregivers, we have experienced a variety of challenges that every caregiver must face when dealing with an AD or dementia family member. While traveling the rocky, slip-and-fall, potholed path that every caregiver must negotiate, we have been lucky. Lucky that is in that we have a close bond between us. The better to be able to vent and let ourselves down with each other. We have also found our own spiritual connection and guiding influences that have brought us a measure of peace of mind in this work. By and large, the threatening specter of depression, which can overcome dementia caregivers quicker than any other, has not come knocking at our door. On this very topic, a Harvard University Medical School report on caregivers found that up to 60% of them struggle with varying degrees of depression. Thankfully, we do not count ourselves as part of this lot although our hearts go out to those who have been enveloped by it.

We have met other caregivers doing the same thing that we are. They are deep in the midst of caring for one or more parents, a grandparent, or perhaps brother or sister. Some maintain a positive outlook on life and have found a healthy ways to experience and release their grief.

Others are going through a mighty struggle in their efforts to generate and maintain a high level of motivation and perseverance necessary to care for a cognitively disabled person every day. For those folks who have no other available, or willing, family members to assist them, the care giving work demands they face can easily begin to look like the Himalayan Mountains.

I have compiled two lists here based upon our experiences that I wanted to share with other caregivers. The first list is what I call the Caregivers Challenges. These are the obstacles experienced by many new as well as veteran caregivers. The second list is comprised of what I have deemed Caregivers Success Traits. While there are a variety of web sites and books now that make this kind of information available, I wanted to offer my own personalized point of view of my experiences as a family caregiver with some humor thrown in as well.

Caregiver Challenges

Stamina: Physical and Mental

Providing care giving attention to an elderly parent or patient suffering from one of the many dementia's requires a lot of effort and energy. Both mental and physical. On many days, you go home emotionally drained and physically spent from your activities. Since neither of our parents are living with us, we have the lucky option of going home to our own place each night.

Many caregivers do not have this luxury. Being able to get up and leave a stress generating environment each day is one form of what I would call "transitional decompression."

We also realize that this lucky option may not last forever. We are grateful that our parents still own and reside in their own homes and will continue to do so for hopefully a few more years. But having one of our parents come to stay with us at some point in the future is a possibility that we have already discussed. In the meantime, we are supportive and doing all that we can to see that our folks remain in their homes as long as they desire to do so and and are capable of doing so in a safe manner.

Usually once we arrive home, my wife and I will either talk over and vent out our frustrations right away, or, we disperse the low-vibrational negative energy while having dinner. This is what I call our shared "conversational decompression." But at least once a month, we come home with "empty tanks." In the realm of extreme fighting sport, this would be the equivalent of what the fans refer to as "tapping out." Fighters who cannot extricate themselves from being pinned with a submission hold, or knocked out, signal their surrender by tapping on the ring canvas. Many caregivers go home after experiencing "tapping out" days.

Yet Penny and I are also fortunate. The amount of hours that we devote to care giving at present averages approximately 30 hours each week. There are others that are compelled to provide 24/7 service to a loved one. For them, there is no break nor relief opportunity to step away from the stress. In this instance, according to a medical professional we know, 24/7 caregivers are forfeiting 5 to 8 years of their life span away as the price of admission for shouldering the brave and selfless duties of a care provider.

Resistance, Anger and Combative Behavior

A family member, at times, and out of frustration, will become resistant, angry, or physically uncooperative in attempts to get them out of bed, getting them back into bed, or during the act of transporting them to a medical appointment. Dressing, changing, or undressing can also stir up some of the struggles just mentioned. Same goes for turning a patient in their bed to change them and getting them in and out of walkers and wheelchairs.

The patient begins to gradually loose their ability to process and comprehend what you want them to do. Their ability to anticipate and sense your actions has also been compromised or erased. In frustration, and, not being able to communicate their disorientation, displeasure or simple fear, they become upset, resistant and angry. They "act out" with the only communication behavior tool they can grasp.

Administering Medications

Administering medications to an uncooperative and recalcitrant patient will test your patience and resolve. This often calls for creativity and imagination. How many ways can you grind up, disguise or hide the taste of a pill or liquid in another food or drink item? Sometimes, just stepping away; stopping momentarily the clash of wills, then returning to the issue 15 minutes later, will often provide you with a completely different and cooperative mood. I call it taking a "lap around the block." Ending a confrontation defuses and relaxes an upset patient.

Feeding A Bedridden Patient

Sometimes your patient is uptight about something and is not interested in eating at that moment. Maybe, the food doesn't taste quite right that day. At other times, they eat everything that you offer without a fuss. A twist that you can also encounter is when the patient eats some of what you offer, then refuses to open their mouth for anything else. Now what are you going to do? Applying the "lap around the block" approach works here as well.

There are also times when you'll go to feed a patient who is stewing about something, and, without warning, you'll have the food or drink spat out on your clothing or face. This will always be the acid test of your sense of humor for that moment!

Tip: Keep a towel close at hand for feeding times. Better to also keep one draped across the front of your patient or person you are caring for too. Let the towels catch all of the "mealtime shrapnel."

Incontinence

The job that usually announces it's unpleasant arrival to your nose first!

Malodorous and messy. It is truly amazing how many times an adult can urinate or poop in a 24 hour period. Cleaning up and changing an adult, basted and coated with bodily waste takes a lot of time to complete. Even with a cooperative patient, this can take 15 to 20 minutes for cleanup and re-dressing. On the other hand, if the patient or person being cared for is in a feisty mood, or wants to struggle with you, make it a half hour or more test of your stamina and endurance as well as a hold-your-breath contest. Sadly, since incontinence means the inability to control the dam, you are sometimes rewarded with an encore project right on the heels of what was just cleaned up.

Every caregiver must find a way to deal with the feeling of self-consciousness about the very personal and private issue of cleaning up after an incontinent patient. The patient is feeling a double dose of embarrassment with your wiping and touching of their private bodily areas. It takes a long time for them to deal with all of their formerly private toilet activities now happening in front of an audience.

Sun downers Syndrome

A substantial number of people who have AD exhibit what is referred to as "Sun downers Syndrome." They become restless and want to go roaming, seemingly aimless, towards the end of the day. The person acting in this fashion appears to be on some kind of bizarre treasure hunt: examining, rummaging and handling everything that they touch or see. Switches, knobs, drawers, appliances, doors and windows all seem to compel testing, opening or investigation.

In addition, some people carry it one step further by shuffling, re-arranging and moving household items, personal possessions, and even items from the refrigerator to other locations that make no sense to the rest of us.

My own gut instinct theory here is this: rummaging and wandering is initiated in an effort by the individual to perhaps find clues or objects that will help them orient themselves, to determine where they are or what is happening to them.

Another behavior or mood that overtakes an AD patient is an often vocalized desire to run away. "I want to go home", or, "I wanna go home now", is blurted out when the patient is experiencing frustration, confusion, or fear. In my opinion, this is code word talk for the patient simply wanting to be the way they used to be before Alzheimer's took control of their life. It's the only thing they can come up with for telling the world, "I want to go back to my life the way it used to be.'

Caregivers Success and Survival Traits

Dump Trucks Full of Patience

Patience, patience and lots more patience. Every day of the week. Imagine what every one's water bill would be like if patience could be added to the water supply like fluoride and chlorine? Whoa Nelly! Every one's water bill would exceed their monthly mortgage payment!

Learning to back off the throttle and let go of my own ingrained, "do it now, I need to be productive and efficient," inner voice proved to be a hard thing for me to let go.

With the economy tanking as it has done over the past 3 years, all of my survival skills in the workplace demanded adaptability, working more productively, and taking on more tasks and duties. Damned if I was going to be let go at work for not performing the duties of 2 or 3 others plus my own desk! So, I was in for a rude shock in thinking that I was going to be able to apply this kind of approach with older, dementia challenged seniors and parents. For them, there is no longer any sense of urgency, no multitasking, no adaptability, nor any kind of machine like efficiency taking place. How can there be? Aches, pains, bladder, bowels, pills and ravaged cognition rule the world of many seniors.

So I smartened up and trained myself to become more compassionate in realizing that our loved ones did not ask to have AD dropped on them like a barrel full of pine pitch. There is no line anywhere of people demanding to be cursed with AD. On the other hand, I can envision such a thing as an "Alzheimer's Refund Desk" with multiple lines in front of it stretching for miles. All of the folks waiting in line would each have a sealed, unopened box labeled AD to be returned; glad even if they could just return the box without a refund.

AD and dementia patients, parents and grandparents have no control over what is happening to them, nor do they desire for it to be happening. Learn to be more compassionate and forgiving, became my new motivating self-talk.

When caring for an aging parent, we easily overlook the fact that our parents are still having a hard time wrapping themselves around the notion of: my kid is not that 12 year old snot anymore, and they are now catching me making unwise, unsafe, ill-thought out choices that I used to catch them at. In short, roll reversal is a rock-hard jaw-breaker for our seniors to bite into.

Remain Flexible and Open Minded

Many of the books written by the AD experts talk of using the tools known as redirection and distraction. When a patient is reluctant or refuses to do something that you expect them to, you can defuse that moment for them by providing them with an alternative or different choice. If the patient or family member is becoming upset or fearful about something, a distraction offered can serve to break the tension with a less threatening choice to consider.

As mentioned earlier, Penny and I have improved our success rate using these techniques to counter refusals, No's, or, "I don't want to."

Learn to anticipate challenges ahead of time. One or two truly tranquil days with brother, sister, a parent, or grandparent does not mean that you are about to begin a long streak. One or more good days is usually followed by one or more setback days. This is the ebb and flow of caregiving and the cycle of Alzheimer's and dementia. Just like your favorite NFL team in season. Hard for them too in achieving consistency.

Strike A Balance

Plan on all of your relationships with others being put to the test!

As AD tightens its grip on your patient or family member, the demands upon your time increase. Time consequently becomes less available to spend with friends and family not affected with the disease. You may find yourself acting stressed and uptight with other family members that you had no problems with before. You may also discover that you have gone for many weeks, neglecting to stay in some kind of contact with them. As a caregiver, a conscious effort must be made to balance your time between your patient, your hobbies, and enjoying the company of others.

Time To Cherish

AD is ultimately fatal. It will continue to be so for some time. Hope is on the horizon but perhaps another 10 to 12 years away. Make the choice of grabbing on tight to those special cherished moments with your patient or family member. Practice noticing and savoring their small modest accomplishments and victories each day. Praise them for every successful little thing that they do or get right. Praise them often. They need to hear this kind of validating reinforcement!

My wife has become a consummate master at this in her dealings with aged AD and dementia patients. No labored effort is too small that she does not take notice of it and offer up praise. This is love and reverence for another in action.

Detach From Your Own Emotional Triggers

Coming from the multitasking, do-it-now work background that I have, generated stress with me every time I encountered a "we are not ready yet" situation on doctor's appointment days. For me, being on time, early, or otherwise punctual has always been a big deal. So my fix here for starters was to begin showing up 30 to 45 minutes earlier than planned. Now there was time to help the folks finish getting dressed, taking their medications, seeing that they got their shots, or maybe letting the dog out for a poop before leaving. A simple change up that worked out to be a win/win.

I compelled myself to start viewing delays and setbacks that arose as "merely small matters" and no longer big deals or irritants. And then I recalled a quote that I once heard at a motivational seminar many years ago: "Don't be one of those people that go through their lives majoring in minor matters." Will the issue at hand that has you steamed up now really matter by the end of the day? Will it matter by tomorrow morning or the end of the week? Most likely it will not.

Reminiscence Therapy

Make a conscious choice to take time talking to your patient or loved one about the old times and experiences of their lives. Though their short-term memory forming abilities is under assault, long-term memories are often still intact until the disease has reached it's end stage.

I have found with my own family member that reminiscing and looking through old photo albums serves as a calming and pleasant activity for them.

Put simply: for them it is taken as a sign that they still matter, that they are still cared for, and that their memories are still validating the parts of them that have not been lost. Yes, they still have some face cards left in their hand to play!

A Spiritual Connection

Caregiving is not a responsibility that people enthusiastically line up for. On the contrary, many folks run like hell from it. The thought of providing care and assistance to a terminally ill patient or family member scares the dickens out of plenty of people. Yet it can have a positive transforming effect upon you. For those who chose to remain openhearted, empathetic and can keep their focus upon their patient instead of themselves, a spirit-to-spirit connection can be opened between caregiver and patient. I have met caregivers who have reached a place where much of their daily contact with their patient has become intuitive, non-verbal, almost extrasensory. Sometimes this kind of communication take the place in the form of what my wife calls "eye talk." A patient finds a way to communicate their needs with the caregiver with nothing more than their eyes.

This goes hand in hand with caregivers who go about their work with a respect and reverence for their patients. For them, patient or family member care is more of a soulful partnership; eventually enabling the loved one to meet head on their own death with a sense of acceptance instead of fear and dread. A chaperone angel, escorting another valiant spirit up to that place that others have referred to as the "departure lounge", to begin their journey home.

Talk To Others

There is strength in numbers.

Affirm to connect or reconnect with other families who have an AD member in their family. Spending time getting together on the phone, the internet or meeting face-to-face for lunch or coffee is both therapeutic and empowering. It is an opportunity to share your successes, your mistakes, and laugh at what seemed so distressing to you 3 days ago. Finding the humor in what you do goes a long way in dialing back caregiver anxieties. Become an e-mail, Facebook, or MySpace buddy with other caregivers. Sign up for e-mail newsletters and informational alerts at some of the websites that are listed at the end of this article.

Respite Care For The Caregiver

Sooner or later you as a caregiver will need a break. Someone else to step in for a day or two to cover for you. An opportunity for you to take a decompression break. Time to take a small vacation, a weekend getaway, or maybe tackling a small home improvement project that has nothing to do with sickness, medications, and incontinence. Caregivers absolutely need occasional breaks to get away from what they do!

If you are one of the family members who ran with the pack away from stepping up as a caregiver; here is the opportunity to step back into the game in a small but meaningful way and give the primary caregiver a break. You may not be cut out to provide daily care like the primary caregiver does, but just stepping in as a short term clutch player will be most appreciated!

Find A Hobby

It matters not what kind of hobby you already have or will choose to take up.

What matters most is that you have an activity that brings you some kind of enjoyment and distraction. Some folks are attracted to a hobby or perhaps sport that requires the expenditure of both physical as well as mental energy. Others are attracted to an activity that involves a team approach where they are engaged with others.

I consider myself one of the lucky ones in that I have several outlets that allow me to disengage and detach from caregiving. I love to write, read, tinker with graphic art design, pursue family genealogical research, as well as home carpentry and landscaping. Lots of hobby realms to go explore.

My advice is find something that you can immerse yourself in. An interesting and stimulating hobby serves as a counterbalance to the intensity and emotional demands of caregiving. An enjoyable hobby is one that you can flee into!

Empower Yourself By Reading

Alzheimer's Disease is getting a tremendous amount of attention at all levels of medical science including federal government funding. As of January 2010, there are some truly promising medications working there way through clinical trial right now. Over 600 plus trials are already underway or in the recruiting stage domestically and internationally for both AD medications and early detection diagnostic tools.

There are a variety of dedicated web sites to visit that provide beneficial information about the progress being made in the search for new treatments for Alzheimer's. I have listed here several of my favorite web sites to visit.

www.caring.com

The Caring site publishes questions submitted by caregivers and the answers every week. The answers are provided by a wide variety of experts in medicine, law, Medicare, Medicaid, etc. Lots of everyday hands-on information to family care providers. You can arrange to receive weekly e-mail alerts sent to your e-mail address to read, save, and share.

www.dementiaweekly.com

A great site with up to the minute articles on caregiving. AD and dementia research topics are featured. Plenty of informative short articles to read and share.

www.medicalnewstoday.com

This is my favorite site to visit. Why?

Because the articles feature the very latest worldwidemedical research findings written in a concise one to three page summary style. Even though my own personal focus involves AD, this site provides informative and educational bulletins on a vast number of diseases. Most of what I have learned about AD, the medications, and progress made with it were found at Medical News Today. As I became better educated about AD, I branched out to other sites from here.

www.alz.org.

The national level web site for the American Alzheimer's Association. Informative articles, helpful links and a listing of companies that have joined the national Alzheimer's Early Detection Alliance (AEDA). I recently subscribed to this web site as a caregiver to receive e-mail alerts on the newest research topics.

www.alzforum.org

A web site more for medical researchers, doctors, and clinicians.

The motto of this site is "Networking for a cure." The articles and bulletins are informative but not too technically cumbersome for the lay reader.

www.clinicaltrials.gov

I also like to visit Clinical Trials. Gov. at least once a month to see the progress of drugs already in the trial process. As previously mentioned, there were over 600 trials underway or enrolling subjects as of January 2010 for AD and related Dementias. I like to monitor those trials that are starting Phase III trials. This is because a Phase III trial represents the home stretch portion of the racetrack. At this level, a medication has already been in the pipeline and survived testing for maybe 8 to 10 years. Medications that successfully make it through a Phase III trial stand a 80 to 90% chance of making it to the marketplace.

Finally, the ranks of those providing caregiving duties to a loved one is a rapidly growing service business. With a new case of AD being diagnosed in the United States every 70 seconds, thousands of individuals and families nationwide are joining the caregiving collective every day. If you are a member of the Baby Boomer Generation as the two of us are, you will be involved in this business probably sooner than you realize.

The resources are out there. Empower yourself for the betterment of both you and the patient or family member you are caring for!

Jeff Dodson lives and writes out of Elk Grove, California

He is an active caregiver advocate and writes about Alzheimer's Disease

E-mail: imaginatic@frontier.com

He can also be found on MySpace and Facebook

April 2010