CRAMMING IN SOME MEMORIES - November & December 2001

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.

OUR WORLD FALLS APART - October 2001

That day in October 2001 we staggered out of the doctors office, Michael and me, leading Elbert between us. Words, just words ... our minds had registered the words but our hearts had stood still with their sound. The doctor said it was Alzheimers but that couldn't be. Just words. I heard a scream deep down inside my body but there was no sound. The scream was stuck deep inside my gut.

It was difficult, to say the least, to accept a sentence like that. Sure Elbert had been forgetful, had a change now and then in personality but every old person I knew got forgetful. It would be so difficult to tell the rest of the children and all the grandchildren. Some took it well while with others it took months for the enormity to sink in. It's so easy to shut your mind to what you do not want to know is true. It's much like when a loved one dies and you go through the grieving process. This was denial, big time. At the news Elbert just said 'There's nothing they can do to help me, so I live with it'. We all would have to live with it. That was 8 years ago and we are still living with it.

Back then I had no clue what lay ahead and I still don't. Every day is set on a different path with Alzheimers patients. I have a better idea now for I am better educated about Alzheimers and I've been through some trials by fire. Perhaps it is a good thing that we don't know what the future holds. God doesn't reveal it so that we are protected. Those early days I began to feel my way, examine my feelings, even make a few plans.

The knot in my stomach seemed like a permanent growth. My mind raced ninety miles an hour. I did not know if I could handle the mental decline of the vibrant, funny, active man that I'd loved for over 50 years. I railed against our plight. I desperately wanted things to be like they had been but I knew that the old Elbert was slipping from my grasp one moment at a time. I have to admit I was scared, more scared than I'd ever been but I felt that God would protect us and love us. Even though I knew all of that I had never felt more alone in my life.

An Introduction

Hello,
My name is Willie Latane Barton. I am a caregiver. It seems I've been a caregiver of one sort or another just about all my married life.

Oh, I forgot to introduce my husband. Elbert and I have been married nearly 58 years and he's the one needing my care right now.

Elbert retired from the Navy (after 22 1/2 years) and we settled back in Walker Co, Al. so, as Elbert put it so firmly... 'our parents are getting older and need our help'. So, we bought a house, our children grew to be teens, then young adults.
Elbert retired in 1990 and I thought, wow, we can now just go and do what we want. The children were all married, we had grandchildren and they all lived away. We didn't see them nearly as much as we would have liked. Now, we could just travel and visit and have fun.....but there was my Mom who needed me.

We moved to Virginia in 1999. Got tired of all that traveling around and this location would put us near most of our kiddies.

Drum Roll....Disaster struck. In 2000 Elbert was diagnosed with prostate cancer. He had radiation which was tough but he came through it with flying colors. Then at the end of 2000 our doctor said she noticed some problems with Elberts memory. He was tested in early 2001 and we were told he had Alzheimers.

I am about to take you through our journey with Alzheimers. If you are a caregiver you will understand what our life is like. If you are not, at present, you may be someday soon and perhaps this will help you prepare for the toughest journey of your life. It has it's valleys, deep dark valleys in which you think you may not crawl out of and, it has the wondrous joys that come with just the simplest things happening. It changes how you look at life, how you come to realize what is most important and how you can turn loose of all the superficial things we clutter ourselves with, thinking it will make us happy.

God has been very good to us. I am blessed beyond measure and I thank Him every day for love, good health (Oh, I forgot to mention that in 2002 I had colon cancer and chemo) and such amazing children. And, since then, two total knee replacements.) but you know what, God was watching every move I made, every illness and His care lifted up me and carries me through each day. Some days I think I'm tough... some days I know I can't make it but He is there always, I know that and can survive.