A Beautiful Life Cut Short by Early Onset Alzheimer’S: Marcia’S Journey

By Denver D. Smith

This book is about the experience of being a caregiver for my beautiful wife who suffered from early onset Alzheimer's. The last part of the book is a diary of her day-to-day condition the last four or five years of her life.

• Language: English
• Publisher: Trafford Publishing
• Release date: Oct 7, 2014
• ISBN: 9781490747811

Denver D. Smith

Marcia and I were married September 30, 1994, and were together nineteen years and four days when she passed away October 4, 2013. She was diagnosed with early onset Alzheimer's in 2000, when she was only forty-nine years of age. I was Marcia's 24-7 caregiver from 2007 until her passing. This was the second marriage for us both, and we were a textbook example of how a happy life together should be. We lived in a small community on Lake Oliver, directly across the lake from Columbus, Georgia. I am retired and am writing this book based on the personal experience of having watched the thirteen years of progression of Alzheimer's disease and how it changed a beautiful, vibrant lady to the shell of what she once was when she passed from this earth. Having to watch someone you love dearly die a day at a time, with the only thing that can be done is keeping them comfortable, is a very excruciating experience, and hopefully, reading our journey through this progression will help others who have a loved one with this disease understand what the future holds for them and their loved one.

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Copyright 2014, 2015 Denver D. Smith.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.

isbn: 978-1-4907-4783-5 (sc)

isbn: 978-1-4907-4782-8 (hc)

isbn: 978-1-4907-4781-1 (e)

Library of Congress Control Number: 2014917600

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Acknowledgments

I am deeply grateful to my family members, friends, and organizations who provided great support during this journey. Without that support, I would not have been able to fulfill my commitment of keeping Marcia at home and giving her the care she so rightly deserved. There were so many it is not possible to name each and every one. The following are names you will see as you read the book and are ones who were closest to us and will enable the reader to know their identity.

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T his book is

written in memory of and as a tribute to my sweet, beautiful wife, Marcia Smith, who was diagnosed with early onset Alzheimer’s disease at the early age of only forty-nine. Marcia and I had a relationship and love that could only be described as fantastic. From the time she was diagnosed with this terrible disease until the very end, she never once questioned why this happened to her or complained about her condition. Marcia was an extraordinary lady with a lot of class, poise, composure, and strength in every way. She was very intelligent and just a good, loving person. Quite contrary to most people’s understanding, Alzheimer’s not only affects a person’s memory but also eventually destroys the body and only leaves a shell of the person they once were then takes their life. Although every individual is different and exhibits different characteristics, the progression of this terrible disease follows a similar pattern. It is hoped that sharing the journey we traveled through thirteen years will be helpful to those who have loved ones who are struggling with this terrible disease. In writing our story, I have tried to be as concise and factual as possible but at the same time very careful to not share anything of a personal nature that could be detrimental to the memory of my sweet, beautiful soul mate.

A BEAUTIFUL LIFE CUT SHORT

BY EARLY ONSET ALZHEIMER’S

Marcia-edited.jpg

MARCIA’S JOURNEY

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I

first met Marcia in the late 1970s. I was a foreman at Alabama Kraft Company, a division of Georgia Kraft Company. Alabama Kraft was a large and relatively new paper mill producing primarily substrate used in making beverage packaging. During a staff meeting one morning, the superintendent announced that the lady who was in the department clerical position was transferring to human resources and her replacement was going to be a lady from the accounting department named Marcia Lee. He made it very clear Mrs. Lee was a devout Christian lady and warned us there would be no profanity or dirty jokes allowed in the office complex whenever she was present. We had a lot of sales representatives who called on us as well as service technicians, and some were rather loud, told jokes, etc., when visiting in the office. He said he would be sharing this same information with those outside people, and we should ensure everyone abided by these rules.

Since all the foremen worked shift work, each of us was only working the day shift one week a month. Also the foremen had a separate office, and we were only in the department office sporadically bringing reports from time to time. I met Mrs. Lee the first time I was working day shift after she came to the department. She was nice looking, very quiet, and reserved and seemed like a nice lady with a lot of class. At that time we were upgrading many of the paper machine systems to newer technology, and some training was going to be required including the use of computers, etc. Within a few months, I was reassigned from my duties as a paper machine foreman and assigned to be project manager for a new formal training program for the paper machine operators. In the past, all training had been OJT (on-the-job training). I was told I would be developing the material in conjunction with a professional training company, and I would be dedicated to this project for at least three years and would no longer be involved in the everyday production and operation of the paper machines.

My new office was in the main administration building next to the plant manager’s office; however, I spent a lot of time between there and the paper mill office doing various interviews, etc., developing the training material. During this time, I got to know Mrs. Lee better, and she was assisting me with some of the clerical type work. This was working fine, but within a year, there was an opening in the technical assistant superintendent position, and the superintendent met with me and told me he wanted me to take that job because he was going to be retiring in a few years, and I needed to be getting prepared to step up into his position. This was an opportunity I could not afford to pass up because it was a great step in preparing for my advancement in the company. Needless to say, I wound up with the technical assistant position but also retained the training manager job. I was putting in a lot of extra hours as well as working most Saturdays. I was depending on Mrs. Lee to do more and more work for me, which was actually above and beyond her job description and responsibility, but she never complained or said she didn’t have time to do whatever I needed. Mrs. Lee’s direct supervisor approached me and said he knew I had a hectic workload and was putting in a lot of extra hours, and Mrs. Lee was spending some time doing extra work for me. He said Mrs. Lee’s husband was out of work, and if I needed her to work overtime to assist me, he was sure she would appreciate the opportunity to make the extra money. I talked to her and reviewed with her some work I thought she could do for me with just a little training. She was willing to assist in any way she could and appreciated the chance for any overtime. I was surprised how fast she learned how to process the material. Afterward she worked late quite often as well as worked occasionally on Saturday, and I came to realize she was a very intelligent lady and learned the training material quickly. She understood the material enough she became qualified to proofread a lot of the material we were putting together with operators we had selected as SMEs (subject matter experts).

In the mideighties, a decision was made to expand our plant that would double it in size. The superintendent whom I reported to decided at his age he didn’t want to tackle a project of that size and announced his plans to retire. This was in the spring of 1986, and when he retired, I was promoted to paper mill superintendent. During the next couple of years, I was completely absorbed with the expansion, traveling, sometimes international, conducting pilot plant trials, engineering meetings, etc. During my absences, I would have a replacement doing the basic parts of my job, but a lot of the behind-the-scenes work continually got behind. With a short period of training, Mrs. Lee was invaluable in taking care of a lot of the things I would normally do when I was there.

A little background about my situation. My marriage had been good early on, but my wife and I had married when I was only nineteen; money was short, and we lived week to week. I was working in the technical department in a textile plant at that time. I worked every opportunity of overtime trying to keep my head above water. In 1957 I went back to school four hours a night, three days a week to further my education in an effort to get a better job. In 1961 there was an expansion at the Georgia Kraft Company paper mill in Rome, Georgia. I applied and got a job in the technical department. I later transferred to the paper machine department to make more money and a better chance for advancement. In 1966 we built the mill in Alabama and I was transferred there, so we relocated to Columbus, Georgia. My wife was from a very large family and never really got acclimated to moving 150 miles away from her mother, five sisters, and six brothers. She went back to Rome quite often and spent a lot of time visiting with her family. As our children got older and started moving out, our marriage deteriorated.

As mentioned above, my marriage of thirty-five years had been on shaky ground for some time, and my being away from home so much tied up with work and traveling extensively did not help those matters. Being totally involved with the expansion including engineering meetings, inspection of machinery as it was built, etc., necessitated that I made fourteen trips to Europe and Scandinavia during an eighteen-month period. In the fall of 1988, my father passed away, and a week later, I was served with divorce papers. Our divorce was finalized in late 1989. The expansion of the plant was completed and began startup operation in the fall of 1990. At that time, I was promoted to paper mill manager being responsible for about half of the plant including the finished product. A change was also made in the supporting staff groups, and Mrs. Lee became the paper mill department secretary reporting directly to me. This was in the fall of 1990, and I also acquired the responsibility of being one of the customer representatives for our seven European converting plants. This duty entailed my attending a quarterly plant managers’ meeting in the suburbs of Paris, France. Mrs. Lee, whom I now called Marcia, took care of many extra duties in my absence.

Sometime in late 1991 or early 1992, one of our suppliers approached me and said he had overheard Marcia talking to someone in the office that the coming weekend was her wedding anniversary. He said since she did such a good job keeping him informed about scheduled outages, etc., and hunted him down when we had unscheduled downtime, he would like to make arrangements to treat her and her husband to a weekend in Atlanta if that was OK to do. Although that was kinda shaky as far as company policy was concerned, I told him to do whatever he’d like, and I didn’t know anything about it. Later that afternoon, Marcia came in my office and told me what he had offered and said the supplier had said he had cleared it with me. I just told her for them to go and have a good weekend.

Our plant was located a little over halfway between the Columbus, Georgia/Phenix City, Alabama, area and Eufaula, Alabama. I lived in Phenix City and all, but one of my staff lived in Eufaula. It was rather common for salespeople to invite our staff group to dinner on occasion, and since I lived thirty-five miles north of the plant and almost everyone else lived twenty-five miles south, we usually dined in Eufaula. I had a houseboat docked at Lakepoint Marina just north of Eufaula, and I stayed at night on it quite often, especially if we had a group dinner in Eufaula or when we had problems at the plant and I worked late. After having gone through a bad divorce in which no one wins, I had sworn off ever being involved with another female. My career was my work and my hobby, and I was totally dedicated to it and content to remain a bachelor for life.

Marcia and her husband were always invited when we went out in Eufaula. They seemed to have an ideal marriage and looked to be head over heels in love. I had often looked at them and wondered why my marriage had not turned out that way. A few weeks after the Atlanta weekend, Marcia came into my office and asked if I had time; she needed to talk to me. She asked if it was OK if she closed the door. The first thought that came to my mind was that someone had upset or been ugly to her and she needed me to straighten it out. That had happened a couple of times before. She sat down in the chair across from my desk normally used when I was talking to salespeople, negotiating prices, service, etc. She said there was something I was going to hear, and she wanted me to hear it from her before it got all over the plant in the news and rumor mill. She was looking down at the floor and after a long pause said, My husband and I have decided to get a divorce. At first I thought maybe this was a joke or something, but when she looked up, there was a big tear running down her cheek. It was then I realized she was serious, and the shock of what she had just said was such a surprise I was speechless. After what seemed like an eternity trying to absorb the situation, all I could come up with was Is there anything I can do for you? She said no and that it was going to be the talk of the town, and she just wanted me to hear it from her before I heard it from someone else. She then got up and left the office.

After I had a few minutes to think, it dawned on me I had really not reacted as I probably should have and offered more support, as she was very upset and distraught, but I was totally shocked because that hit me as a complete surprise. Her office was adjacent to mine, and there was a door between them that anyone wanting to see me had to check with her to see if I was available. I waited a short time trying to get my thoughts together then went to her office and asked if she would like to talk. She came back into my office, and I told her I wasn’t trying to be nosy, but if she wanted to talk about it, I certainly would be supportive in any way I could. She just told me they had been having a lot of problems for an extended period of time, and when they were in Atlanta, things got really bad, and she asked her husband what she could do to make him happy, and he simply said, Give me a divorce.

A year or so passed, and I no longer had the training project, the expanded plant was running well, and although I still had the quarterly meeting in France, I was not having to put in anywhere near the extra hours as I was before. In fact, I had a lot of time with nothing to do at night and on weekends, and I started getting lonely and bored. Since both of us were single and I had grown to really respect her intelligence, her sense of knowing how to handle things, and just her personality in general (not to mention that she was a good-looking lady with a lot of class), I started wondering if there was a chance she might be interested in going out to dinner sometime. I knew both her children were off in college and she lived alone, but I was sixteen years older than her and probably not the type she might be interested in, but I thought, What the heck! I met with the vice president/general manager and the manager of manufacturing technology, the two to whom I reported, and asked if there would be a problem as far as company policy was concerned if I asked her out to dinner. I was not aware there was any policy about that, but I wanted to check. Both said it was not a problem for them and wished me luck.

The following Friday afternoon just before she left for the weekend, I got up the nerve and nonchalantly asked what she was doing Saturday night. She replied, probably rent a movie and get a pizza as she usually did. I asked if she would like to go out to dinner, and she said, Who in the world is in town on the weekend? thinking it was a salesperson taking the group out. I told her no one, I was asking if she’d like to go to dinner with me. She thought for a minute and said, Are you going to get in trouble if we do that? and I told her I had already cleared it with the top brass. She thought another few seconds then said, Sure, why not? As mentioned before, we lived sixty miles apart, so we went out that time in Eufaula, which was a relatively small town and had few choices of restaurants. During the next several months, we went out occasionally to nicer restaurants in Columbus, Georgia, and the surrounding area and developed a close bond. As time progressed over the next several months, we developed a lot of mutual respect and realized we had a lot in common. To make a long story short, during about a year and a half’s time, our bond developed into a very strong love and respect as to what we each wanted and needed in life. We became engaged then got married on September 30, 1994.

Shortly after we started dating on a regular basis, Marcia told me all she ever wanted in life was someone to love her like her daddy did, no holds barred and no strings attached. Her father had a massive heart attack and passed when she was only nine years old. She had been a daddy’s girl and loved him with all her heart and soul. Losing her father was a traumatic experience she had never gotten over. She said for a long time after her daddy passed, she used to sit on top of the house to talk to him so she could be closer to where he was. She got married at the early age of sixteen and had hoped she would get that kind of love she had searched for, but it never materialized. I couldn’t imagine anyone not being able to love her like that because the more I gave her, the more she returned at least twofold. Needless to say, when I proposed marriage and she accepted, I considered myself the luckiest man in the world, and after we were married, the life I had with her far exceeded anything I had ever expected.

Married life with Marcia was so absolutely great, there are just no words that could adequately explain it. We just seemed to jell together in everything we did. Of course, there were some things in which our interests varied, but we both tried to support the other even in things one of us might have no interest. A good example was I had been an avid NASCAR fan since I was very young. In fact, I did some dirt track racing with some of the guys who eventually made it to the big time. That was back in the days when we ate pork and beans on the tailgate of a pickup truck and stayed broke all the time. I got married when I was nineteen, and that put the brakes on my racing career. Many of the suppliers I did business with were also NASCAR fans and provided us with tickets and/or accommodations to a lot of the races. Marcia would go with me and sit and read a book while the race was going on. After going to several races, she told one of the guys who arranged these outings that the hottest she had ever been, the coldest she had ever been, and the wettest she had ever been were at NASCAR races, and I could go to races anywhere and anytime I wanted but to count her out; she would stay home and watch it on TV. Due to our age difference, we also had different tastes in music, fashion, etc., but it never caused a problem. In fact, most people find it hard to believe, but in our two years of dating and being engaged, then nineteen years and three days of marriage, we never had a serious argument or disagreement.

Life was good with the exception of one thing. We had a new president of our division come on board just before we married, and he decided Marcia could not work for me. We were told she would have to transfer to another job and I would have to get another secretary. Marcia loved her job and in my opinion was irreplaceable to my area of responsibility. I just flatly refused to have any part of that. Eventually the human resources manager transferred her to the training department as an administrative assistant to the training manager. Several women applied for her job opening, and I refused to interview any of them. After a lot of encouragement, I finally told HR to give the job to the one who had the most seniority. I had been working for the company for thirty-four years, and she had been working for twenty-five. The guy who made this decision had been with our division for two days when he made that decision. He had no idea who we were, what our contribution to the company had been, what our morals and dedication to our respective jobs were, nor gave any credence to my word that being man and wife would have no impact on how we performed our jobs. He just said that the company he worked at previously would not even allow us to work at the same location. I didn’t tell anyone, but I made a decision at that time that if the work, time, loyalty, performance, and dedication we both had given the company and the results I had produced in over thirty-four years didn’t mean more than that, then my days with the company would shortly be over just as soon as I could make other arrangements.

I discussed my intentions with Marcia, and she told me she knew I loved my job and she would be OK in her new position. I told her I was bitter and disappointed about what had happened and was not going to be happy with my job anymore, and I didn’t want to work for people who didn’t appreciate her and me any more than that. She simply told me to do whatever I wanted to do, and she would support me in whatever it turned out to be. I’d had several top management people in the supplier industry tell me if I ever decided to leave the mill and do something different before retiring, they would be interested in talking to me. I didn’t know if these guys were just blowing smoke because I was a customer and they were trying to make me feel good, but I started putting out some feelers and was surprised how many bites I got. I was sixty years old at the time but was qualified for full retirement due to an age plus years of service criteria in the management personnel retirement plan. I took an early retirement package and left the company on November 30, 1996. Due to having signed a noncompete agreement when we did the expansion, I was entitled to be paid a year if I left the company before age sixty-five, so I had to be in no hurry deciding what I wanted to do.

I took a couple of months off then spent another couple of months doing interviews with different companies and considering several offers. I decided to accept the offer of a privately owned chemical company that supplied the paper industry to be a consultant working with their customers in a troubleshooting role to assist in resolving problems involving runnability, quality, process, etc. I would also be involved in planning and conducting trials, participating in some training of young salespeople as well as some PR work at mills where I had a relationship with management people whom I had been associated with over the years in PIMA (Paper Industry Management Association). I began a new career with this company in April 1997.

I worked from my home office, but my new position required a lot of travel throughout the United States and sometimes Canada. Marcia was still working at the paper mill and had assumed most of the responsibility of running the training department. She had grown to like the work and enjoyed the people with whom she worked and who worked for her. She was not a perfectionist but had to be sure all the i’s were dotted and the t’s were crossed. Sometime around mid to late 1998, she had a new employee that was not working out, and this bothered her. She counseled the employee and gave her more training, but it just wasn’t working out. I knew the company policy was new employees were hired on a ninety-day probationary period. They were given a progress evaluation at thirty, sixty, and ninety days. At the ninety-day evaluation, their immediate supervisor made the choice to retain or not retain the employee. If the employee was designated do not retain, they were automatically terminated. I told Marcia she would just have to deal with it until the ninety days were up. It turned out because the employee was a minority female and the company’s political correctness numbers needed to be considered and since this employee’s position had no impact on the big three considerations (i.e., production, cost, and safety), the decision was made (from HR) to not terminate the employee. This employee became more and more a problem and was a thorn in Marcia’s side. She started coming home irritated because of things that had happened at work. I had asked her several times over a period of months to just quit her job. We didn’t need the money, and she could travel with me to some of the places she might want to visit. One Monday morning after she left for work, she called me on her cell phone and asked if I was serious about wanting her to quit work, and I told her I was serious as a heart attack. She said, I’m gonna do it today! She submitted her letter of resignation that day in July 1999 and agreed to work a thirty-day notice in order to give them time to train someone to fill her position. In retrospect, while she did have a problem with that one employee, her frustration and confusion were most likely the first signs the early onset Alzheimer’s was affecting her ability to handle things as she always had in the past.

As time progressed, she traveled with me a few times and went to some of the conventions, etc., I attended, but she was content to just stay at home most of the time. As the old saying goes, I couldn’t put my finger on it, but I just simply had seen something was changing about her. When you love someone truly and as deeply as I did her, you can sense when something is wrong. At first I thought maybe it was just the different life of not having a job and the nine-to-five lifestyle. She seemed to be a little forgetful at times, but I sensed something was just not right, something was different. I did a lot of research online, and she seemed to exhibit signs people often did at the beginning of a brain tumor or possibly brain cancer. Needless to say, I was very concerned, and I discussed this with our primary care physician. He referred us to a neurologist to do tests in order to find out if there was in fact something wrong. During several weeks, they did brain scans, CT scans, MRIs, etc., but found nothing physically wrong. At that time, our daughter was working in the audiology department at UAB in Birmingham, Alabama. The adjacent wing was the neurology department, and she talked to some of her friends who worked there, and we got an appointment with the head physician who was one of the foremost specialists in the nation for memory disorders.

We spent three days at UAB running every test imaginable, and when everything was finished, he met with me, and his conclusion was the memory and recall tests indicated there was indeed some kind of problem, but the physical tests did not reveal anything. Also due to her age, no history of dementia in her family, and no stereotype physical characteristic normally associated in people with Alzheimer’s disease, he was going to diagnose her as having MCI (mild cognitive impairment). He told me in conjunction with our primary care physician they wanted to monitor her closely for a while and see if anything changed. He said he was not prescribing any medication at that time but gave us a list of some vitamins, fish oil, etc., that were known to be good for the brain we needed to start using.

At a visit three or four months later, he met with me and said the brain scan had shown a very minute amount of amylose plaque, and he was now confident she had early onset Alzheimer’s, and we needed to get her on medication ASAP. At that time Aricept was the only medication on the market that was proven effective. He explained in detail there was no known cure for Alzheimer’s at that time, but medication would retard the progression of the disease, and if she could tolerate the drug, she could have a good amount of time left of a practically normal life, but I needed to know the disease is eventually terminal. He said the amount of time Aricept would be effective varied with each patient, but experience was that five years was about the maximum. There was much research going on, and hopefully a discovery might be made for a cure of the disease before her condition got too far advanced. A year or two later, a drug called Namenda was approved by the FDA to be effective for memory loss, and that was added to her medication as a dose each morning and night. Marcia stayed fairly stable until late 2006 and early 2007, but then her condition started going downhill, slowly at first then accelerated more and more as time progressed. I became uncomfortable leaving her alone, as I traveled on my job quite a bit, and because of a few instances that occurred when I was gone, it became evident I needed to be at home with her, so I resigned from my job the first quarter of 2007 and was her 24/7 caregiver for the duration of her illness.

During the next two or three years, her condition continued to deteriorate but at different rates of decline, and we still enjoyed life to the fullest extent possible. Marcia had experienced inner ear problems in the past, so the first cruise we did was a four-day/three-night one in the Caribbean to see how she tolerated being on a ship. We had a great time, and she had no problems, so we later did a ten-day island hopping cruise out of Honolulu and stayed an additional three days in Honolulu. We did a week vacation at St. Croix in the Virgin Islands in December 2007 and had a great time, but by then it became apparent she did not need to be left alone, even in the hotel room.

We had a thirty-three-foot motor home that we used occasionally, but it had no slide outs and was relatively cramped to use with her condition as it was by now. I thought maybe a larger one would enable us to do some traveling and wouldn’t entail her having to stay in a motel room, which was unfamiliar territory. We purchased a forty-foot diesel pusher luxury motor home with three slide outs and had a lift assembly custom made and installed. The lift had an upholstered seat she could sit in, and it lifted and swiveled to put her right in the coach beside the passenger seat. When parked and the slide outs extended, this unit was very nice and roomy. Regretfully her condition deteriorated so rapidly, we only got to use it three times and then only for day trips.

I did a lot of research online including getting information from the Alzheimer’s Association. I read several books written by the spouse of other women who had early onset Alzheimer’s that were helpful in understanding and trying to be prepared for the journey we faced. I’m not sure where I got it, but one article I read made a lasting impression on me, and I quote below:

ALZHEIMER’S VICTIM REQUEST

PLEASE DON’T LOSE YOUR PATIENCE WITH ME

DON’T GET ILL OR MAD OR CRY

I CAN’T HELP THE WAY I’M ACTING

I CAN’T BE DIFFERENT THOUGH I TRY

THINGS ARE CONFUSING BEYOND YOUR CONCEPT

I AM SAD AND SICK AND LOST

I JUST WANT YOU TO KNOW HOW MUCH I NEED YOU

TO STAY WITH ME AT ANY COST

DON’T ASK ME TO TRY TO REMEMBER

DON’T EVEN TRY TO MAKE ME UNDERSTAND

JUST LET ME REST AND KNOW YOU’RE WITH ME

KISS MY CHEEK AND HOLD MY HAND

I WANT YOU TO KNOW THAT I NEED YOU

THE BEST OF ME IS GONE

I NEED YOU TO BE BESIDE ME

AND LOVE ME UNTIL I’M GONE

When I read that piece, it brought tears to my eyes, and I made a commitment to myself that regardless of the inconvenience and/or cost, my sweet wife would stay at home, and I would care for her for the duration of this illness unless her condition got to the point she could not adequately and safely be taken care of at home. With a lot of help from my family members who lived locally and the invaluable assistance of hospice, we were able to fulfill that commitment.

Relatives and friends would often call and inquire as to how Marcia was doing. I was not sure what and/or how much she understood, so I never talked about her condition in her presence, and I would go to another room to talk. Sometime back I had started keeping a sort of diary of significant events to review with the RN on a weekly basis and also the hospice physician who made visits every sixty days. We were meeting with our primary care physician quarterly and the neurologist at UAB in Birmingham every six months, and they reviewed these notes to determine what had transpired since the last visit with each of them. After reading some of the books I mentioned before that had been very helpful to me, I decided I would keep this record and possibly write a book of my own one day. I e-mailed the family members and informed them since I was keeping this record now on a daily basis and could be easily copied and send out on e-mail every day, I would do that to keep everyone informed and up-to-date on what was going on. What started out as a distribution list of about nine or ten people gradually increased to about twenty-five, as different friends, etc., found out we were doing it and asked to be added to the list. I called this my daily log of events and sent each day’s e-mail as my daily blog.

While some of this may be redundant, the following is taken from my logs and daily blogs. This is an effort to recall and document what transpired during the last five years as her condition deteriorated. The dated entries are information taken from my logs and blogs. It should be understood that people come from different backgrounds and have different past personalities, so people’s demeanors vary with Alzheimer’s. Some become violent, argumentative, and downright mean. I want to very strongly state that from the time Marcia was diagnosed with Alzheimer’s and throughout the entire duration of her illness, she never once questioned why this happened to her or ever complained about her condition. That is evidence of the class and poise she exhibited and her strengths of being a strong, true, and very classy lady, and she maintained that throughout her illness.

When doing my daily blogs, I tried to be as concise as possible as to what was going on in our daily lives. In the following that I am sharing, I have edited some instances of a personal nature in order to not be detrimental to her memory. She was a fine lady, and things occurred that Marcia would never have done in her normal life but was the results of the disease.

In early 2009 she went through a period when she continually said, I want to go home. She seemed to not know where home was because I would ask if she wanted to go to Wills Cross Roads (where she spent her childhood), Abbeville (where she went to school), Eufaula (where she lived until we married), etc., and each time she would say, "No . . . I want to go home. During this time, she also often asked, Whose house is this?" referring to our home. She continually folded clothes and stacked in different places in the house as well as in her SUV. This lasted several months then just gradually went away.

During an appointment at UAB in May 2009, Dr. Clark asked if I had seen any indication of her having depression. At that point in time, I had not. He said it will come and we can treat that. Within a month, she started having spells of crying, and when I asked what was wrong, she would just say, Nothing. When I asked why was she crying, she would say, I don’t know. I conferred with Dr. Clark and Dr. Funk. We started her on depression medication and after two or three changes found a medication that resolved the problem, and she did not have to battle that situation but a short period of time.

Sometime around early to mid-March 2010, she started refusing to undress for bed and sleeping in her clothes. She also continually paced the house and carried clothes from one place to another. This is about the time I started keeping a rather concise daily record rather than just notes of the progression of her condition. I do not want to in any way be detrimental to her memory, and I have been careful to delete any information entries that are too personal; however, every individual is different to some degree, and it is my desire that anyone who has a loved one or friend with this awful disease can read our experiences and get an idea how this disease affects a person’s demeanor and everyday life. Some of the day-to-day information such as eating, sleeping, etc., will seem redundant, but as you read through the experiences as they occur on a day-to-day basis, it will help you to understand the ups and downs in demeanor and how things progress and/or deteriorate as far as eating, bathing, behavior, etc.

Saturday 4/17/10

We went to a restaurant in Eufaula called The Creek for her stepfather’s birthday. She asked time and again on the way to Eufaula where we were going.

Friday 4/30/10

We were having dinner at Red Lobster, and she reached over and took a drink of my beer, which was very uncharacteristic of her. She had never tasted beer.

Sunday 5/1/10

She was very disoriented all day. I was sitting in the swing at the pool area reading the paper, and she was walking around. I heard a noise and looked up; she had gotten on the pool cover and was up to her knees in water. It was a safety cover and supported her weight enough to keep her from going any further down. I took her in the house, and while I was changing her clothes, she had no idea how she got wet.

Wednesday 5/5/10

I had worked on the pool pump then cut grass on the hill. I came in to take a shower before going out to dinner. When I turned the walk in shower on, I found two shirts and a sweater plus bathroom garbage can contents in the back of the shower, wet!

Sunday 5/9/10

We went to Abbeville for Mother’s Day at Felicia’s (Marcia’s sister). Amy/Brent (Marcia’s daughter and husband) and kids came down from Birmingham. Maw (Marcia’s mother) got upset and was crying about Marcia’s condition. Marcia showed no indication she knew what was going on. On the way home, she kept asking if we were going home and would I stay with her. Of course, I assured her I would.

Sunday 5/16/10

I noticed the AC for the kitchen side of the house wasn’t cooling. I checked, and the outside unit wasn’t running. I checked if the breaker was tripped and found the breaker and a 110v one immediately below it had been turned off. I would not think she would know how to do that but have no other idea how they could have got turned off. I put a piece of Scotch tape on the door of the breaker box so I’ll know if it is opened again.

Thursday 5/20/10

We were at the sixth-month evaluation appointment at UAB with Dr. Clark. During the mental and memory tests while I was meeting with Dr. Clark, the RN administering the memory and recall tests came to the office and said Marcia was very uncomfortable… kept asking for me and did not do well at all on questions. In fact, the nurse discontinued the tests because she was getting too agitated. She did not know day or date, her birthday, where she was (location), etc.; she could not get a test score. When we first started going to UAB, she buzzed right through those exercises, but recently her score had been dropping significantly.

Friday 5/21/10

Today she was completely disoriented. We went to the garbage dump and took our trash. When we got home, I told her to go on in the house while I parked the truck on the boat ramp. She couldn’t find her way through the garage to get in the house. She kept saying, I’m sorry. I tried to tell her she hasn’t done anything to be sorry for… it isn’t her fault if she is frustrated. I told her to not worry about it… I’ll take care of everything, but it didn’t seem to register with her.

The last couple of weeks of May, there was nothing significant. She just keeps moving clothes to the garage, picks up miscellaneous things, and relocates throughout the house. My PalmPilot has disappeared, and I have looked everywhere I know and have not found it. I don’t know if I’ve misplaced it or if she has moved it somewhere. I normally keep it on the kitchen counter; maybe it’ll show up.

Thursday 6/3/10

I got her a glass of milk and morning meds as usual. I was doing some things in the house and noticed her meds were gone, but she had not drunk any milk. I asked how she took the meds without anything to drink; I didn’t get an answer. Later I found two pills in the wastebasket in the hall bathroom. Later in the afternoon I went in the laundry room and found the rest of her meds on the washer. They looked like they had been wet, so I threw them away and got new ones.

I’ve always put her morning (six) and night (five) medications in a Dixie cup and put it with a beverage by her chair in our bedroom. She would take then whenever she pleased but normally within fifteen or twenty minutes. Recently I’ve found some pills in the trash cans, on back of the commode in master bath, etc. I’ve had to start having her take the medicines as soon as I put it out, and I make sure she takes it. Also, sometimes she puts pills, etc., in her mouth and starts to try to chew them rather than wash them down with liquid. I have to make sure she doesn’t do that.

Friday 6/4/10

I now physically give her the meds morning and night and make sure she takes them.

Saturday 6/5/10

Some of the family had come to play in the pool. We had made ice cream and were all sitting around the pool. Marcia kept getting up and walking around to the front of the house to the parking pad. When everyone was leaving, she got in Debbie’s car before I got around to the front. I had to tell her she was staying with me, and she said, Good, got out of the car, and went inside with me.

Monday 6/7/10

I had noticed several times there was pot in the toilet but no paper. She never flushes the toilet after using… number one or number two. Her panties will be stained, and I wash them out by hand when I give her a bath… which is every other day now. I noticed a smell, so I took off her pants and panties. There was a glob of pot stuck in the crack of her derriere. I had to wash it out and put on clean clothes. As of today I’m not allowing her to sleep in her clothes. She will probably resist, but that just has to be changed.

Tuesday 6/8/10

When she started to go to bed tonight, I told her she had to change into pj’s. She was very defiant about it, but I at least got her to put on pj bottoms… I let her keep her shirt and sweater on.

Wednesday 6/9/10

She slipped into bed with her clothes on while I was doing e-mail. I just left her alone as she was asleep, or pretending to be.

Thursday 6/10/10

I got her to sleep in pj bottoms… wore them all day, Fri 6/11.

Monday 6/14/10

(Actually early Tuesday—1:00 a.m.) She was in bed and I was watching TV. She got up and went in the master bathroom… it was pitch dark. I waited a short period of time for her to come back out, and when she didn’t, I turned the light on… She was coming out from the potty area pulling up her pants. Since she never flushes the commode, I went to do so, and she had undoubtedly urinated without raising the commode seat and had wet all over the commode and floor. I checked her pants, and they were not wet, so I left her alone.

Friday 7/2/10

Today was her fifty-ninth birthday. I got her a dozen long-stem red roses and a musical (Pretty Woman) card for her birthday. She didn’t listen to the music nor seem to understand what it was for.

Wednesday 7/7/10

Today was not a good day. I tried to straighten out a zipper on her sweater, and she shoved me backward, saying, I don’t want to do that. I kinda lost it and took the sweater off and put it in the laundry room. I felt like an idiot later because she doesn’t understand what she is doing. My bad!

Saturday 7/10/10

She refused to eat anything all day. She agreed to eat some chicken McNuggets for dinner. After I got back with them, she would not eat. She took a bath in the afternoon and put on her pj’s and a light sweater, since the top was short sleeves.

Sunday 7/11/10

She ate a waffle for breakfast. Late afternoon when I was going to fix a snack, she said she would eat the McNuggets, but after I got them ready, she would not eat. During the day, she put on an additional two sweaters. When she started to bed, I told her she had on five tops and needed to take a couple off… she said no. She’s sleeping with all that garb on. She is still moving things around the house constantly.

Friday 7/16/10

We had our family dinner at Cheddar’s… Before we got seated, she wanted to go home. She ate two croissants, did not touch her meal. She said she had to go to bathroom—I got Debbie to go with her—walked in and back out. She got up from the table two times and started walking away—had to stop her. After dinner, several came to the house and swam a while. We tried to get her to come out to the pool deck… She got about two steps out the door and said, I don’t want to do this. She went back in the house and stayed in the bedroom while they were all here.

Wednesday 7/21/10

We had an invitation to a friend’s retirement party in Macon, Georgia. She said she wanted to go. We planned to go early and visit with my brother and his wife. She agreed we should stay the night, since it would be late, so I made a reservation at the Hampton Inn and checked that my brother would be home on Saturday.

Friday 7/23/10

When we discussed plans for Saturday… she said she was not going. I reminded her of our plans; she just said she was not going.

Saturday 7/24/10

I got my daughter to stay with her overnight while I went to the retirement party. No problems.

Monday 7/26/10

When making the bed, I noticed a spot—she had wet the bed. This happened also about a week ago.

Friday 7/30/10

I did a fish fry for our Friday family dinner. We had about fifteen to twenty people. She wanted to stay in the bedroom. I was very busy cooking, etc. Finally, I got her to come out when everyone was starting to eat. She did OK but seemed very uncomfortable. Debbie and Sharon helped a lot with her as they usually do.

Saturday 7/31/10

She wet the bed again. I cleaned and put on clean clothes. Fifteen minutes later, she wet her clothes and several places on the bedroom carpet, also the bathroom floor. She had to change clothes again. She was loving all day, and we when went to bed, I asked her to wake me if she had a problem so I could help. When I tried to kiss her good night, she pushed me and said, Get away from me.

Sunday 8/1/10

She did not wet the bed last night—went to the bathroom as soon as she got up this morning. She seems relatively calm this morning but does not want breakfast. She normally eats something (waffle) three or four mornings a week.

Sunday p.m. and Monday a.m. 8/2/10

Sunday night she ate a pork chop, a couple of bites of mashed potatoes, and a piece of corn bread. While watching TV, she kept reaching over to hold my hand and tell me she loves me. She took her medicine and retired at around 10:00 p.m. Monday morning she slept in until 10:00 a.m. and got up in a good mood. She ate three waffles for breakfast!

Tuesday 8/3/10

Relatively good day. I found water running in the bathroom a couple of times.

Friday 8/6/10

We went to Yardbird because she wanted chicken fingers. When we got there, I asked if she wanted to eat there or take it home. She couldn’t make up her mind, so I decided we would eat there. We got inside, and I noticed she had on only one shoe. I went to the car to get her shoe, and it wasn’t there… she had come from home with only one shoe on. When I got our food, she wouldn’t eat the chicken. She ate a few fries and bread. When getting ready for bed tonight, I told her she was going to have to start wearing pj’s and a Depend at night. She didn’t want to wear them… I finally told her if she was going to sleep in the bed, she had to wear these to protect the sheets and mattress. She finally let me put them on her, but when I tried to kiss her good night, she told me to get away from me.

Saturday 8/7/10

Now she has started going in my closet and getting my starched dress shirts on hangers. I have found her carrying them around twice and caught her opening door of the closet today. I told her she didn’t need to be going into that closet. She said OK.

Sunday 8/8/10

Afternoon I asked if she would like to go for a ride in the country. She said that would be nice, but we were not gone thirty minutes and she wanted to go home. I said we needed to pick up a few items at Walmart, and she said OK. We had not hardly gotten inside the store when she started wanting to go home. I just got what we had to have and carried her home.

Monday 8/9/10

Sometime over the weekend, she undoubtedly urinated again on the commode in the master bathroom with the cover lid down. I found urine on the lid, down the sides of the commode, and on the floor. It looks like she must have gone to the bathroom sometime during the night and forgot to raise the lid. She continues to take clothes and all kinds of small items (soft soap, lotions, washcloths, towels, etc.) to the garage and the car.

I had to go to the dentist today… She went with me but wanted to go home almost the entire time we were gone. She has been wearing a Depend every night since Friday and not giving me too much trouble about putting them on, but she gets kinda mad afterward. When I try to kiss her good night, she pushes me away.

Wednesday 8/11/10

I found the same situation on the master bathroom commode… urine all over everything and floor. Also last several days she has been going into my closet and getting my starched dress shirts that are on hangers and leaving them at different places in the house, garage, and once found one in the Lexus. I keep three- or four-gallon-size bottles of water for the dogs on shelves in the garage just outside the door from the back foyer. She has started bringing a bottle in the house occasionally. I have found one in the kitchen, bathroom, bedroom, etc. I ask why she is doing this, and she says she didn’t do it. We went to El Vaquero tonight. At first after I cut her quesadilla into bites, she didn’t want it… but finally ate maybe one-third of it and drank one-half of a sixteen-ounce margarita. She is still wearing a Depend at night but not happy about it.

Thursday 8/12/10

I had to go by the bank and do a few errands. We stopped by Walmart on our way home to pick up a few things… Temperature was ninety-eight, but she wouldn’t take off heavy sweater. When we were ready to leave, I told her it was so hot and the car was parked a good piece down the lot, to sit on the bench just inside the door and I would get the car and pick her up. When I got there, she was gone. I left the car running and went inside looking for her but didn’t see her. I had no idea if she had gone back in the store or was in the parking lot. I rode around a few minutes then parked to go back in the store. When I got about thirty feet from the entrance, I saw her coming out. Needless to say, I was scared… I scolded her for leaving the place I told her to stay, but she just stared blankly at me. I know now to not leave her like that anymore.

Sunday 8/15/10

Felicia and Joe came up and stayed until Tuesday morning. Marcia again seemed very distant. She wanted to stay in the bedroom where the two of us normally watch TV. One time while they were here, they were out on the screened porch and I was doing some stuff in the kitchen. She came up to me and told me we needed to talk. I said, OK, what do you need? She said, We need to get out of here, and then turned and went back to the bedroom. We went out to eat on Sunday and Monday nights, and she hardly ate anything. Felicia said she had really changed since they were here about six weeks ago.

Wednesday 8/18/10

This morning when I got up, I went in the master bathroom and found the hot water running in one of the lavatories; stream about the size of a pencil. I don’t know if it ran all night or if she went to the bathroom sometime during the night and didn’t awake me. I had called yesterday and made an appointment with Uli to get her hair done and face waxed. She didn’t want to go in when we parked in front of the salon. Once inside she was very uncooperative, and the ladies really had to baby her to get her to let them remove the facial hair, shampoo, cut, and style her hair. I took her then next door as usual to get a manicure… had the same problem there. The past two or three days she has eaten very little; today only one-half of a waffle at breakfast, nothing else all day. Also she gave me a little trouble about taking her medication tonight. This is the first time she has balked at taking her medicine, but after I told her it was not an option whether she wanted to take it or not, she reluctantly took it. She’s