Tuesday, December 23, 2008

2004 - Trying to find something that works

The year 2004 had started out well. Elbert has always been even-tempered, easy going, pleasant and kind. He still is as there have been no wild mood swings as there had been when he was first diagnosed. The Respirdal has helped tremendously. Medicine can be both a hindrance and a huge help. In this case it gave me back the man I knew... sort of.

I notice that Elbert is becoming increasingly uncomfortable when he's 'out of his comfort zone'. It's very noticeable when we go to places he's unfamiliar with or when he is with a group of people. He seems confused about his surroundings so he just shuts down. Where is the guy who was always full of laughter, happiest in the midst of family and friends, telling jokes, whistling, singing? I don't know where he went... he just vanished and I know he will never be back.

Our son in law John takes Elbert fishing every chance he gets. Elbert loves that, especially when he catches more fish than John does, which is just about every time they go. On their return, Elbert remembers to tell me how many fish he caught and usually gets it right (according to a nod from John).

Elbert has replaced his favorite pasttime, fox hunting, with the fishing now. The hunting grounds are several miles away but he doesn't go anymore.

I wonder alot about how we will manage. I hate being in a position of needing help but know that we will need it... I hope I can stay strong, both mentally and physically and I am trying but my own health has suffered lately. But, both the cancer and the first knee surgery is behind me. Elbert is very concerned about me. He worries like an old mother hen and comes to give me a kiss whenever he is in the room.
Those are the sweet times and I wouldn't trade them for anything. He's such a dear.
I have to laugh sometimes to keep from crying. For instance, after spending hours in Elbert's company I will walk away to do some chore only to have him call after me, 'What do YOU have to do' as if I should be sitting beside him every minute the rest of our lives. I could say 'What do I have to do, oh, honey, let me tell you.' but I just laugh. He has no idea that life is just one easy moment after another. He doesn't remember what it is to work, to take care of things. His world is shrinking into his immediate surroundings. If I don't laugh, I may lose my mind.

In an effort to try to entertain him I drag out a box of photos. It worked!! How often I try to introduce things that he has no interest in but he spends hours looking at the pictures, recalling in some small measure a memory or two from the past.

Asking him to help me with the housework has different results. 'Please put the dishes in the dishwasher' I ask. But, I find where he has rinsed food off some plates and put them on the counter top to dry. I find dirty dishes stacked in the cabinets, clean dishes taken out and placed in the dishwasher to be washed. He needs to feel useful, to make his small contribution, but it's just making more work for me. So, the dishwasher is put on an 'off limits' list. My work load gets heavier while he is sitting more and more.

I know that our journey has really just begun. I have no idea where it will take us. I just take one day at a time, that's all I can do. Today I survived. I may cry a little and even laugh but I won't even think about tomorrow until the sun rises after a restless night.

Monday, December 15, 2008


I love to quilt, been doing it for years but now it is a real godsend providing me with a break from my daily routine with Elbert. A friend and I started getting together once a week and since Elbert could still be left alone I'd go over to her house.

By summer of 2004 I am facing my first knee replacement and dreading it for a number of reasons. Here I am, taking care of Elbert and the house (and everything else) and I realize that my recovery from the knee surgery would prevent me from being in charge of much of anything for quite some time. Elbert would be of no help and from past experiences I could bet on him making things more difficult than easier. It's not like he could help it, it was just what it was.  I had family coming to help out for awhile but they couldn't stay for weeks. What was I going to do?

One day I'm over at the friends house, my quilting project sort of dangling from one hand, my needle in the other and I am bemoaning my plight. She listened while I went on and on and finally when I paused to catch my breath she said, 'my neighbor's daughter may can help you out. Why don't I invite her over?'

Next quilt day in walks this little bitty woman no bigger than a 'broom straw'. I think to myself,
'There no way she can take care of Elbert'. You see, Elbert is over 6 feet tall and he is still pretty strong. Suppose he presents a problem that she can't handle. I have no idea what the future will bring but right now I need some help.  I had to trust in the opportunity that God had set before me and so I hired Tammie.

It's now four years later (2008) and Tammie has been a friend, a rock, a confidante, a nurse and my constant life line. She's just like family and most times I forget she's not. She loves us both and she dotes on Elbert. I know God sent her to us - because without her, I don't know how I could have made it through the tough times.

Monday, December 8, 2008

A Precious Moment - early 2003

Elbert Elbert is getting very acusitory, not like him at all. Seems I can do nothing to please him. I am also having to keep things from him for if he knows about anything coming up soon he harps on it constantly. I don't tell him anything of illness in the family, or a death of a friend. His mind is just too mixed up to handle that.

We are in the 'in-between' stage now. I see some normalcy and I really expect us to be like we were but then I get thrown for a loop when the normal Elbert disappears and this stranger comes in the place of him. This is a difficult time. I wonder how many times I've said that very thing or at least thought it. How many times will I say it in the future?

Elbert's birthday, his 73rd, was on a Sunday in Feb. I drove into church as I do all the time now. Afterwards we went to the Nauticus Maritime Center. Elbert growled and grumbled. 'It's cold' he'd mutter so I offered to take him home. He didn't want to do that either so we stuck it out and he seemed to relax and enjoy himself. The USS Winsconsin was docked alongside as part of the museum so we went aboard. His feet just seems to fit that deck and he walked all over every inch, examining every port hole, every gun. He even took a turn at the wheel. He announced on our way home that he'd had a great birthday.This disease is such an unknown to me, to the family. As things progress and get out of control more and more frequently I am slipping into depression. Every day brings a new episode of some sort. I try so hard to stay calm and I know he can not help how he is but it's hard to not lose my temper. And, sometimes I do. I guess I am entitled.

I try to educate myself about what we are going through, what lies ahead. I read some of 'The 36 Hour Day' by Mace and Rabins. Then I read 'Alzheimers Early Stages' by Dr. Kuhn. I think that book should be required reading for anyone caring for an Alzheimer's patient. It's that good. The book says I should be telling the doctor everything that is going on, so I tell him that Elbert was very withdrawn all winter. He increased the Reminyl that Elbert was already taking. Sometimes the doctor will give Elbert a mini-memory test when we go for a checkup. When asked who the president is, Elbert says' Oh, it's that fellow who's been in there a long time'. That is really no answer at all. When asked what year it is, he said 1993. It's 2003. At least he got the 3 right.

Elbert's slipping backward in tiem, forgetting the present. How long will it be before he forgets me and our long time together. I feel very sad.

Just when I think things are going badly there comes a ray of light. The confusion in his brain loosens enough for us to have some normal days. Perhaps that's God's way of keeping us focused on the wonderful parts of our lives and not lose our way in the bad.

It was s customary evening in late June (2003). I am at the computer when Elbert walks up behind me and puts his hands on my shoulders. I tilt my head back and he says 'I just wanted you to know how much I appreicate you'. How sweet that he does, in all his fog, know that I am struggling to keep us going, that it is so hard for me. I treasure the moment over and over again.

I wanted to talk, about us and where we are at this uncture of time. For once he sits down with me. We have the finest conversation. He's aware of his 'forgetfulness' and the problems it causes. I asked him if he worried about his disease. He answered much as he had when we first found out. 'There's nothing that can be done' then he paused and as he continued I could hear a big hopeful question as he added 'Is there?'.

I asked him if he ever got depressed.
'I try not to. It is useless to get depressed about something you can't change, but I guess I do'.

The man I knew, happy always, forever comfortable with whatever fell his way was not thrust into a situation he could not control, find any happiness with. Yet, he had a calmness about him and I knew that he knew that God was taking care of him.

I crawled into bed that night with such a peace but that was the last 'heart to heart' talk that we ever had.


1. Educate yourself. Read everything you can both in print and online to know all you can about Alzheimers. It helps tremendously to know the facts and be prepared.

2. Treasure each precious 'normal' moment. They will get harder and harder to come by.

Friday, December 5, 2008


It's April 2002 and I've had colon cancer, the surgery is now over and I have chemo coming up. The doctor said that it would last 22 weeks and I realized that I would not be able to drive the long distance for me to receive the treatments of 5-FU and Luprivorin. I'd have to have someone to take me up and wait while the medicine dripped ever so slowly into my veins and then bring me back home. Mainly it was daughter Shirley who took on the task.

The first two treatments were a breeze and I thought to myself, 'Hey, this isn't bad'. Then it hit. I was so weak I could scarcely pull myself up off the couch. Elbert was ever present, ever worried and yet he could not nothing to help me, except take me by the hand and lead me for small walks.

We missed church a lot. I couldn't drive and Elbert shouldn't. Twice he had gone to church by himself and gotten lost, taking over an hour to make it back home. Trips like that would have to be curtailed until I was able to get behind the wheel.
One time that we did go, a dear old member, hard of hearing and nearly blind, had talked rather loudly through much of the service. On our way home Elbert was talking about the disruption she'd caused. That sure opened a door for me. Isn't it amazing how doors get opened for us?

Elbert listened while I talked about some of the problems that he had experienced over the last months, rambling throughout a sermon, unable to remember what his text was, forgetting where parts of the service were supposed to be conducted. Our small church was filled with loving friends so they understood but I knew he was not filling his obligations. As I talked his face was filled with disbelief for he had no recollection of anything being amiss. I suggested that perhaps it was time for him to 'retire' from his ministry. He agreed.

Springtime ended and I felt weaker and weaker. I asked Elbert to help out, maybe do a little housework or warm up some leftovers. Everything I asked of Elbert he did not or could not do. I had to get well soon for somebody had to take command of the ship or we were going to sink. By the end of 2002 I had finished my chemo and was recovering from it's effects. We'd survived it and were actually pretty much back to normal.

In years past Elbert and I had performed our specific roles as a couple, parents, homeowners. He went to work, did the gardening, did his beloved foxhunting and took his family to church on Sunday. I was in charge of the housework, taking care of the children and I had my own hobbies that I pursued.

Now things were getting complicated. Elbert was becoming more dependent on me, following me from room to room, asking what I was doing, where I was going, who I was talking to on the telephone, when were we going to eat. At the same time I was having to accept more responsibility. The chemo had put a huge strain on my body, my memory was even affected. I began to question myself. Did I give him his medicine? When was his next doctor appointment? Did I get all the bills paid and the car serviced? The added pressure of having to constantly answer the same old question over and over 'Yes, dear, the oil in the car has been changed'.... 'Don't put that in the garbage, it belongs in here....'I need that phone number so don't throw it away'.....'Don't put my clothes in the washer, I have to do them'... 'Did you wash your hair, brush your teeth, change your clothes?' I so desperately wished that someone else was in charge besides me. The year ended and a new one rolled around but nothing changed. No magical solution to our plight. The new year would be no different and things would continue to get worse.

Saturday, November 29, 2008

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.

Wednesday, November 26, 2008


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.

Monday, November 24, 2008

An Introduction

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.