Alzheimer’s Diary: John has Alzheimer’s, now getting him the best care . . . telling the family

This is the second of two parts of an ongoing weekly diary. Ginger Sanders will share the emotional journey she is taking with her husband, John, as they discover his onset of Alzheimer’s. Over 5.4 million Americans are living with Alzheimer’s disease; one in eight older Americans have it. Ginger and John Sanders did not expect to be among those statistics. Ginger’s touching story puts a real face and real name on the statistics and – she hopes – will help all of us understand what so many of our fellow Americans are going through.

By Ginger Sanders
Exclusive to KyForward

John got all 30 questions in the Alzheimer’s test right in July, 2011. But the relief was short lived.

By September 2011, he had gotten worse. Even John was now noticing that he was losing words more frequently and forgetting simple things, like how to start a chain saw. Not able to remember words and not able to place them into sentences destroyed his confidence. It broke my heart to see him stymied and self-conscious. He was embarrassed to be around people he did not know well so we became our own island. We discussed the situation with our children who were already concerned.

I gave John the same Alzheimer’s test again in September 2011 but the results were astounding. John only got 22 answers out of 30 questions correct, a 25% drop in just 3 months!

I immediately contacted our doctor who referred us to the University of Kentucky’s Sanders-Brown Center of Aging. However, we could not get an appointment until January 23, 2012! In the meantime, Dr. Gilbert scheduled an MRI for John’s brain to determine if there was a clot or tumor or some clue as to what was going on!!!

On January 23, 2012, we went to John’s appointment at the University of Kentucky. They conducted extensive cognitive testing, analyzed John’s MRI, performed blood and urine tests.

We were so hopeful. In my heart, I just knew it was either a clot or a tumor. Alzheimer’s was already ruled out. We knew something was wrong and were apprehensive what would come next.

Our appointment for the test results was the following week on February 1, 2012. Dr. Charles Smith, Director of the Alzheimer’s Disease Research Center (ADRC) Memory Disorders Clinic at the University of Kentucky Sanders-Brown Center on Aging, was our doctor. We chatted a bit with Dr. Smith and told him of our plans to move to South Carolina in the next 6-9 months. He was all business at this point.

Dr, Smith asked a couple of pointed questions regarding John’s MRI. which indicated he had a major scar across the back of his head. He asked John to explain the origin of the scar. John related that at the age of 10 he had a schoolyard accident where another boy pushed him off a railing and he fell backward onto a concrete abutment, cracking his skull open He had over 50 stitches plus the wound got infected.

Dr. Smith informed us that the “ hippocampus” is located in the area where John was hurt. Further, the hippocampus plays important roles in the consolidation of information from short- term memory to long-term memory and spatial navigation. Dr. Smith then said that John’s childhood accident was the cause. Before he could get another word out, I blurted, “the cause of what? Did John have a tumor or clot resulting from this injury?”

Dr. Smith looked at us and said, “No, John does not have a tumor or clot. He has early onset of Alzheimer’s. You will need to start on medication (Aricept) immediately to halt the progress of the disease.”

The air left the room. I couldn’t breathe. I looked at John and his eyes had welled up with tears.

Ginger and John Sanders. John was diagnosed with early onset Alzheimer's in February.

“There must be some mistake. John’s family does not have any cases of dementia or Alzheimer’s,” I pleaded.

Dr. Smith was so calm and kind. He said, “It is not always genetic. In cases where there has been extensive trauma, as in John’s case, to the brain, the chance of being affected by Alzheimer’s is considerable.”

I cried, “Will the medication stop it and reverse the damage?”

Dr. Smith shook his head, “In most cases Aricept will impede the disease’s progress but it does not reverse it.”

John and I just stared at each other in disbelief. This could not be happening to the “perfect couple” which is how we see ourselves.

“What can we expect?” I asked.

Dr. Smith told us to plan for a year at a time.

A YEAR AT A TIME, HOW DO YOU GO FROM PLANNING YOUR FUTURE TO PLANNING A YEAR AT A TIME? THIS CAN’T HAPPEN TO MY JOHN. I’M THE ORNERY ONE, JOHN IS THE SWEET ONE.

Dr. Smith suggested we register for clinical trials. He suggested we contact one of the top Alzheimer’s research universities, Medical University of South Carolina. They have substantial Alzheimer’s clinical trials constantly being conducted.

All we could do is hold each other and cry. We walked out of the University of Kentucky building in a daze.

How were we going to tell our children, grandchildren, family and friends? How would this change US? What can we do to slow this monster down?

Next Thursday: Telling the children, looking at options, adapting

Although Ginger is a Vice President of Sales for a renowned antimicrobial company (SAS Global Inc.), her main objective is to stymie the onslaught of Alzheimer’s on her husband, John. Ginger lives with her husband and 3 dogs on their farm in Lawrenceburg. A dedicated family person, she and her husband have 11 grandsons. Ginger Sanders is a transplant from South Carolina and a product of the University of South Carolina where she majored in the English Literature. She has taken on the fight of Alzheimer’s to win and help others as they struggle through the quagmire of this disease. She can be contacted at ginwsanders@gmail.com.