Alzheimer’s Diary: John’s disease confirmed, now how shall we break it to the family?

This is the third part 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

How do you begin tell your family that their Pops/John has a life threatening disease and the doctor says to live life one year at a time?

ONE YEAR AT A TIME.

How can our lives be turned so upside down in moments?

We have 10 grandsons with another grandson on the way. It was bad enough that we were all in a quandary of what was happening to John. But the finality of the diagnosis absolutely takes your breath away.

John Sanders with his grandson Jake.

Everyone was waiting to hear the verdict. Our youngest daughter, Lindsey, has been with me very step of the way as we struggled to determine what was happening to John. Although we promised to call her as soon as we received the diagnosis, I vacillated since we still hadn’t comprehended the impact.

Once we could take a full breath and sitting in the clinic’s hallway, we dialed her number. The phone barely rang before it was snatched up. Lindsey said, “Mom, is it bad?” I almost sank to the floor as I told her the diagnosis. She took a huge breath and said, “Mom, how do we fight this?” I repeated everything we were told especially about MUSC’s Alzheimer’s Clinical Studies. She was adamant that I contact MUSC immediately. We talked about the prescribed medicine, Aricept, and next steps for John. Although Aricept is one of the few Alzheimer’s medications, it does not cure or stop the disease, it only slows it down.

Oh my God, ONE YEAR AT A TIME.

Since we were in Lexington, we called our sons, Patrick and Matthew, to meet for lunch. We sat at the dining room table. Isn’t that where all important talks take place? I looked into the boys’ eyes. They were filled with worry and apprehension. John’s eyes were glistening and I was shaking all over. We sat down and held hands. I said “there is no easy way to tell you this, but Pops has been diagnosed with early onset Alzheimer’s.”

Patrick looked as if he had been struck. The pain in his eyes was almost palpable. Tears began rolling down both boys’ cheeks. The look between John and Patrick said “we should have done more things together, we should have talked more.”

Matthew was equally devastated. They turned to me for the complete doctor’s diagnosis. I recounted the cause of John’s Alzheimer’s (the childhood injury), medication available, MUSC and that we were to plan for only one year at a time.

Patrick, spoke first, pledged that he and his family would do anything we needed, anytime, anywhere. He said he would break it to the Indians (Tommy, Jake and Carson). And bless him; he has lived up to his promise. Matthew repeated the same pledge. I wished I could take some of the pain from them. We then just cried and held each other.

We called Beth and Jill, our daughters, who were also devastated but relieved that there was a name for Pops’ condition. We broke the news to the rest of the family. Misbelief, anger and grief flooded everyone’s hearts. I don’t think I could have survived this diagnosis without the support of our family.

John and Ginger Sanders' grandsons, (from left) Jake, Tommy and Carson.

That weekend, the Indians (Tommy, Jake and Carson) came out to the farm so we could talk with them about Pops’ illness. How do you explain that their grandfather has a life threatening disease? You don’t, you focus on the positive steps you are taking. We sat on the porch swing and I took them into my arms. As they sobbed into my chest, they told me they didn’t want Pops to die. I shared with them how Pops was going to enroll into MUSC’s clinical trial which could be a cure, plus the medicine he was taking would slow down his illness. They asked questions like, “When will we know if the medicine is working?” Carson’s response, “Pops can’t be sick, he doesn’t even look sick.”

Again the cruelty of this disease, you can’t see it but it is there.

I assured them that we were going to do everything to stop the disease but in the meantime, we needed to enjoy being with each other and to keep Pops in our prayers.

It is such a blessing to have such loving families. However, it is my neighbor and best buddy, Barbara Pierce, who has been the one to whom I can turn to cry and rage against the injustice to my John and our life. She is not only there to wipe my tears and calm my rages but takes care of our farm and dogs when we can’t be there. With the help of God and the strength of our families, we began the war against this malevolent disease.

I will not let it take My John.

Next Thursday: John’s MUSC clinical trial
 

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 three 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.