Regardless of the trials that overcome us, we are a resilient people. We draw strength from our faith, from those around us that love and care for us. By Nov 2001, our family knew that we would have to use all the resources that we could find, to get over this huge mountain before us.
I knew that Alzheimers was a long term sentence. How long? No one could say for sure. Some patients progress and are gone very fast, some have it for years. I remember President Ronald Reagan and the years that Nancy stood by his side watcing her beloved Ronnie slip away. Would that be us, or would I lose Elbert in a short manner of time?
Okay, I told myself, get a grip. It's reality time, we need to cram as much living into what time we have. So, Elbert and I boarded a train and headed to Nebraska to visit our son and daughter in law. It was a good trip. Elbert enjoyed his surroundings and seeing the sights. His disease had not progressed so far that he could not participate in a fairly good living process.
I think I was trying to cram as many things into our memory bank before the effects of the disease stole that from him. I would have those memories for as long as I lived, and so would son Michael and daughter in law Beth but his recollections of the fun we had would soon be gone.
A month later I drove us up to New York so that we could spend Thanksgiving with Daughter Susan's family. This trip, too, went well and we stored some excellent memories.
Every day was different now. We had enjoyed being with family, however after we returned home, Elbert seemed disoriented and more forgetful. I began to question my traveling decisions. Could it have caused this new problem? At that point Elbert was still driving but he would just drive off in one direction and forget he was supposed to be going somewhere else. I'd have to hunt him down. If we had appointments or places we needed to be, he never remembered.
I began to wonder... are people noticing the change in Elbert, our seeming irresponsibility to be on time, to be in the right place at the right time? Have Elbert's buddies begun to notice he's missing their coffee time at the diner in the mornings or Ruritan meetings he used to attend. Do the people at church notice that he's forgetting scripture and what text he is preaching on Sunday morning? It was time to be open and frank about what was going on, so I began to tell people about Elbert's problems. I was never awkward with the telling and they never made me feel uncomfortable or strange about sharing this new part of our lives. I never heard Elbert tell anyone that he had a problem except for once. He told our pastor's wife and then he was silent about it from then on.
I knew I'd need a large support group and once people knew our situation they opened their hearts and gave their help. Every family with an Alzheimer's patient needs a team that will stand behind them. Every member of that team needs to be on 'the same' page with a plan of action. But, at this point, just 2 or 3 months after diagnosis, I wasn't thinking about all the people I'd have to involve. Right then it was me and Elbert and the children. We were just coping day to day and had no plans for the future. I'd learn, though, how necessary it would be to prepare myself, and others, in order to go to war against the disease that was stealing Elbert from us.