ROBERT B. SCHAEFER is a member of the Information & Referral Initiative.  Bob was kind to share with us the story of his involvement with Virginia's Commission on Alzheimer's Disease and Related Disorders as well the tremendous work he has been volunteering for several Virginia organizations.  

Read also Bob's article on Attitude, Attitude, Attitude.

It was during 1988-89 that my wife, Sarah, while still in her forties, was diagnosed with the probable early onset of Alzheimer’s disease.  It goes without saying that we were both stunned by Sarah’s diagnosis but managed, after several years of intense denial, to meet this life’s challenge with as much humor and determination as we could possible rally.  Eventually, I had drafted myself into the role of her full-time care partner, even though I, myself, was still employed full-time.  In March 1996, however, as I witnessed the Alzheimer’s progress to the point that I felt it was no longer safe to leave Sarah alone for any period of time, I had decided to retire. 

I have never been one to sit on the sidelines, so I became a volunteer for the Southeastern Chapter of the Alzheimer’s Association in Norfolk, VA.  I served on their Board of Directors and became Chairperson for the Patient and Family Services Committee.  I also volunteered to serve as a member of the Speaker’s Bureau.  I served a total of 35 years as a member of the law enforcement community.  I began my career as a New York State Trooper (10 years) before joining the Federal Bureau of Investigation (FBI).  As a former Supervisory Special Agent in the Norfolk Office of the Federal Bureau of Investigation (being the Supervisor for the Drug, Organized Crime, and Surveillance Squad) I had also acquired extensive expertise in the areas of Stress Management and Critical Incidents & Peer Support.  I had also served in the famed FBI’s Behavioral Science Unit at the FBI Academy for just less than ten years.  And as such, I rendered psychological support to FBI Agents and their families, office personnel and local officers following involvement in a shooting incident.  In this capacity, the message I would convey to an individual following involvement in a traumatic incident, was that a choice had to be inevitably made.  And that choice was to become “better or bitter.”  The way to become “better” was to attempt to make something positive out of a very negative situation.  Otherwise, the negativism and pessimism would take over the individual's life, as it became one of “ain’t it awful.”   Hence, after my own traumatic experience with Alzheimer’s disease, I had decided to listen to what I had preached and attempt to turn the incident into something positive.  

And so I began to team teach a block of instruction to police officers and sheriff deputies in the Tidewater area with Julie Ana Skone, who was then employed by the Southeastern Chapter of the Alzheimer’s Association.  Our program, which was very well received, was entitled,  “The Recognition and Handling of Alzheimer’s Patients.”  The demand was so great that I began to teach this course on my own, as did Julie Ana.  This training was based upon the 1998 legislation giving the Department of Criminal Justice Services (DCJS) the authority to set training standards and mandate the training of criminal justice personnel in the area of Alzheimer’s disease.  We are proud to say that DCJS actually adopted our outline that was already in place for our block of instruction.

Sarah and I relocated to the Richmond area during August 1998 in order to be closer to our children, hoping that they would be able to assist me as the burden of full-time care partnering become increasingly difficult.

Once more, I became involved with the Alzheimer's Association area chapter, as a member of the Board of Directors for the Richmond Chapter.  I was also a member of the Patient and Family Services Committee and served as a member of the Association’s Speakers Bureau.  In my attempt to reach out to other caregivers in my situation, I started a Support Group for persons with early memory loss and their care partners and became a co-facilitator for that group which, I am happy to report, is still active. 

I continued to teach the Stress of Care Partnering for the Association and did some law enforcement training.  I was asked by Julie Ana - who is now the Curriculum Director and Chair Person for the DCJS Committee for Alzheimer’s Training - to become a member of and serve as a volunteer trainer for her Committee.  The volume of law enforcement training has skyrocketed since that time.  During 2003, the Alzheimer’s disease and Related Disorders Commission supported the expansion of Alzheimer’s training to include all public service personnel in the Commonwealth (law enforcement, fire and EMS).  It is important to point out that the Commonwealth of Virginia has become a leader in the field of Alzheimer’s training for their first responders.  This is documented by the fact that DCJS Personnel have been requested to share their the workings of their training program with Florida, Texas, Massachusetts as well as several other states.

My personal training efforts have expanded rapidly over the past two years.  I have been training recruit classes for the Virginia State Police, Richmond and Henrico Police Departments on an ongoing basis.  During 2003, I was asked to train Uniformed Members (Troopers) of Virginia State Police at their In-Service classes at the Virginia State Police Academy (2003 – 2004), Uniformed State Police Supervisors (2004), Special Agents of the Bureau of Criminal Investigation (2004 – 2005), and just last month I completed training Virginia State Troopers assigned as Commercial Vehicle Enforcement Officers. 

I have also trained the entire staff, Deputies and Supervisors for the Chesterfield County Sheriffs Department at their Academy in Chesterfield, Virginia.  I have also begun training their recruit Deputies on an ongoing basis (2004 – 2005).

AMONG BOB'S TRAINING PROGRAM ASSESSMENTS: "Excellent!  This class was great!  Mr. Schaefer is so interesting, mainly because he has been a caretaker of an Alzheimer's patient for so long." "The best class of all.  Very scary, but a very good subject.  It really made me think". "He knew what he was talking about from experience with his wife.  He showed us a lot and we learned a lot in a short time.  Very informative.  Needed more time."

Since 1998, I have participated in many “Train the Trainer” sessions in Virginia Beach, Salem and Fairfax, targeting students from law enforcement, fire and EMS. During each of these training sessions, I speak the first day about the “realities of care partnering” and the second day, I facilitate an afternoon of scenarios, which involve direct participation by class members.  The “Train the Trainer” two-day seminars are designed to teach emergency response personnel how to handle crisis encounters with people who have Alzheimer’s disease, a related type of dementia, or memory impairment.  Students receive information about Alzheimer’s disease and dementia to include signs, symptoms, stages, communication with, etc.  Students are also introduced to community resources to assist them in the performance of their duties, as well as valuable information to be shared with the families of Alzheimer’s and/or dementia patients that they might encounter on a daily basis.   By doing that, not only do emergency personnel learn better how to appropriately deal with such situations themselves, but they are able to bridge the gap between families and available resources.  

After caring for Sarah at home for 15 years, I was forced to make the most difficult, challenging, and guilt ridden decision of my life.  That decision involved changing roles from full-time care partner to that of Sarah's care manager.  I was literally forced to turn over her care to professional care givers, who were essentially strangers to us both.  I now visit Sarah in a an Alzheimer's Unit at a local nursing home each and every day even though some days, she might not even recognize me.  These daily visits afford me a rare opportunity to constantly be in contact with and to observe not only my wife, but other dementia patients as they interact and cope in their own way with this horrendous disease.  

This is actually why, now, I am also writing a book about our, thus far, 17 1/2 year journey through Alzheimer's disease.  I feel that I have a unique approach in that I draw a comparison between my law enforcement career and that of care partnering to demonstrate that there are many similarities between the two. In many senses, I think that my law enforcement experience has been an asset to my caregiving role and because of this, I am planning to title the book, "The Alzheimer's Detective, as the Second Victim."  I am hoping - during the course of the text - to share my experience and to help boost the self-esteem of the care partner reader, training them to think as "detectives" in their struggle with Alzheimer's disease.  The book will even incorporate an "Oath of Office" - that readers could have as a reminder of their worth and a strength-booster.  I sure hope that it will be of some value and perhaps help save time and energy for the care partners and their loved ones.