Journey Into The Unknown

Journey Into the Unknown

A physician becomes a caregiver – and discovers God’s strength to lead the way.

Dr. Artie Sudan

Copyright © 2021 by Artie Sudan

All rights reserved.

No portion of this book may be reproduced in any form without written permission from the publisher or author, except as permitted by U.S. copyright law.

Contents

Bad News

1. First Love

2. Alzheimer’s – The Disease

3. The Formative Years

4. Learning to Suffer

5. Building a Family

6. Slipping

7. Faith Boosters

8. Mission Trips

9. An Active Life

10. Miracles

11. A Woman of Prayer

12. Living with Alzheimer’s

13. Black Friday

14. Hard Decisions

15. Pulling Back

16. Downhill

17. Grace For the Journey

18. Caregiving

19. Full Time Care

20. A Little Help From Our Friends

21. Loneliness

22. Quite A Decade

23. Children’s Perspective

24. Things I Never Thought I Would Do

25. The Move

26. Quarantine

27. From Their Lips

Continuing the Journey

Acknowledgements

About the Author

About the Book

Bad News

December 2008

It was just three days before Christmas and all of our kids were home for this year’s holiday. That is no small feat when you have to coordinate four other families with your own and several grandkids to boot. And to make it even better, they were home for more than just the day, so we were really pumped about the time together. Once our kids started getting married, we got into a rhythm of Christmas together with our family and Thanksgiving with the in-laws one year and then the reverse of that the next year. Overall, that has worked out extremely well and of course this was our year for Christmas. Our family is very close and everyone gets along very well, including the spouses. We have lots of traditions around Christmas and as evangelical Christians, it is a special time anyway as we celebrate the birth of Jesus.

And so it was that day when my wife, Luana, and I came home from a doctor’s appointment for her with everyone standing around and waiting for the news. No, it was not cancer. In many ways it was worse. She had just been diagnosed with early onset Alzheimer’s disease. She was 53 years old at the time. Needless to say, the atmosphere in the room dropped like someone had let the air out of a balloon. Everyone began to cry and they started asking lots and lots of questions, most of which I had no answers. It was the beginning of a journey, and I knew more than anyone that this was to be a journey into the unknown.

So how did we get to this point? Let me take you back to the beginning, or at least what I think was the beginning. For the past several holidays the kids and I had noticed that Luana seemed more stressed than normal. This was very unusual for her as she is very chill and goes with the flow and does not let much bother her. She never needed things to be perfect and never minded when people would just drop by the house. That was indeed a good thing because we lived just a block down from our kid’s high school and their friends would drop by all the time, with or without our kids. They felt very comfortable in our home as Luana was a gracious hostess, always welcoming and did not worry about the mess that was made. We didn’t know why she was now stressed, but figured that she was getting older and maybe a little less flexible. Then during the year, I began to notice also that she would forget some things. It wasn’t a lot but just enough to make me wonder. By the fall of that year (2007) I was becoming concerned, but I had not told anybody. We were at a wedding reception for the daughter of one of our friends and I remember talking to a doctor friend of mine who was also a medical missionary and telling him of my concerns. He discreetly laid his hands on her and prayed for her, which gave both of us peace. These memory lapses seemed to be worse during the holidays when she was most stressed and we attributed it to the stress. The kids were concerned because that Thanksgiving she messed up the recipe for one of the dishes we have had every Thanksgiving for years. But after my friend prayed for her and the holidays were over, things did seem to get better.

Luana is a nurse by trade but when she started having children, she became a stay-at-home mom and she loved it. She was a great mom. Then as the kids got older and were all in school, she began to do some part time nursing. She loved being a nurse and wanted to use her training. At one point she worked in an Ophthalmology office but by this time she was working in a wound care clinic. It was a nasty job with ugly, smelly ulcers and other wounds but these things did not bother her in the least. By February of that year (now 2008) I started noticing something new. The wound clinic closed at 5:00 but she routinely was not getting home until about 6:00. I asked her about it, and she said that she was just having to enter all of the data about the ulcers into the computer and it took her a while. Now Luana has never been very tech savvy, so if it was computer related, I could certainly understand. I didn’t think much more about it for a while, but she kept getting home later and later. I asked her if the other nurses were getting home late as well. She told me that they all left right at 5:00. At the same time, I noticed that she was making a lot of mistakes with our financial program. She was the one paying the bills and would enter them into the program and at the end of each month I would get on and reconcile the statement. Again, since it was computer related, I thought it was just that but then I started putting two and two together. We thought the stress of the job was contributing so we decided that she should quit. When she did, she seemed to get better and things settled down for a few months.

But then it started happening again. The financial entering was getting worse, and finally, I had to take that over and just do it all myself. She started forgetting more things and I began to conclude that she really did have a problem and that it was not just stress. You see I am a physician, a specialist in the area of Internal Medicine, and we see lots and lots of people with dementia and specifically many with Alzheimer’s disease. I knew what it looked like. The problem was that I had never seen anyone this young with it and that threw me off (to this day she is the youngest person I have ever seen with Alzheimer’s, though there are certainly others out there with the disease who are even younger than she was). I did a simple MMSE (mini mental status exam) on her and she did not do well. So, I called my friend who is a neurologist and made the appointment for her to see him to confirm what by then I already knew. We did go in to see him and he did a similar mental status exam as well as a thorough neurological exam and pronounced the diagnosis – early onset Alzheimer’s disease. That was the news I brought home that fateful day just before Christmas.

Chapter one

First Love

1974-1976

Luana and I met in the fall of 1974 at Baylor University while both of us were sophomores. Our stories as to how we got there are unique and certainly God-ordained. Baylor is a private university and is the largest Baptist university in the world. That said, it is still a small school with only about 10,000 students at that time. And neither of us would have been able to afford to go there if God had not intervened. We were both from the very middle of the middle class.

My journey toward college was fixed on the University of Texas as that is where my brother was attending and I had just assumed I would follow in his steps. But before my senior year in high school, I had a reawakening of my faith and began to get very involved at my church in Houston Texas, Willow Meadows Baptist Church. At that time, I also felt a calling to become a doctor. I did not know much about Baylor, but I knew people from my church that went there, I knew it was a Baptist university and I knew it had a very good pre-med program. So, I set my sights on Baylor without any thoughts on how I would pay for it. I often wonder what my parents thought about that idea (especially after I had my own children and paid for college tuition), but they never discouraged me from that goal. Two things happened over the ensuing year that paved the way for me to be able to go – both were scholarships. The first was related to my father’s employment. He worked for Firestone Tire Company as a store manager for the wholesale distributorship in Houston. Every year they offered scholarships to children of their employees and there were only four or five across the US. My dad encouraged me to apply and I did. Part of the application process involved taking a test. I really didn’t think much about it and soon forgot that I had applied (as you can see, I was very naive). The next scene, a few months later is forever etched in my mind. I was at school, at baseball practice, and I see from a distance that my mother is outside the fence and jumping up and down and waving a letter in her hand. My coach comes to tell me my mother needs to see me. I had no idea what this was about, but she had a letter from Firestone indicating that I had won one of the scholarships and it was worth $7,000. She was so excited and I was as well though not nearly as much as she was – to tell you the truth, I was a little embarrassed, as you might imagine, being a high school student.

The next had to do with another scholarship that I won. This one was a Jesse Jones scholarship and was through Houston ISD. I honestly cannot remember if I had applied for it or if they just awarded these to students based on their grades and community involvement. I went to Bellaire High School which at the time was one of the top high schools in all of the country. I was very blessed in that regard and I got a tremendous education. I finished with a >4.0 grade point and as such was considered as #1 in our class of 850 students (there were 18 of us who achieved that and I am not sure where I fit in those 18 but I was not the valedictorian). This second scholarship was for $3,000 which gave me $10,000 total. Today that would not even cover the tuition for one semester, but back then it covered all of my tuition, room and board, books, and a little spending money – for all four years! So, I was set and ready to realize my goal of attending Baylor.

Luana’s father was a salesman for several companies but for most of his career, it was with Becton Dickenson. As such, he traveled a lot and was transferred a lot. She was born in Charleston, South Carolina, but had lived in New Orleans, Florida, New Jersey, and then finally made it to Dallas, Texas when she started high school. That was her family’s last move. Her family joined Park Cities Baptist Church and Luana was very involved. When she started thinking about college, she really wanted to go to Baylor, but her dad thought that was an impossibility. Her sister who was two years older went to East Texas College and her dad, the wise man that he was, told Luana that he would pay as much as he did for her sister. Well, that was not even close to what it would take to go to Baylor. So Luana began to pray and to trust that God would provide a way if that was where He wanted her. Well, God answered that prayer by providing a scholarship through an anonymous person in her church. It was enough to get her there and she began applying. It was not until years later that we learned that the anonymous person was her Sunday School teacher. So, we both stepped onto the campus at Baylor University in the fall of 1973, but it was not until a year later that our paths crossed.

For that to happen, I have to confess that I acted a little like Jacob in the Bible, the trickster or the manipulator. I had seen her in the cafeteria and I thought she was really cute. I was with my roommate and I asked him if he knew her. It just so happens that he did. Here the story gets interesting. We all were a part of the Baptist Student Union and without knowing it, both Luana and I had signed up to be a part of backyard Bible clubs as a ministry through the BSU. Even more interesting was that my roommate just happened to be in charge of that program. He had made me a leader of one of the groups and I kindly asked him if he would assign Luana to my group. He did and our story begins, but I had no idea at the time that she already had a boyfriend, one she had dated for most of her freshman year. We began doing these Bible clubs with kids in the neighborhood and there, as I got to know Luana, I found out that she was not only a pretty girl but that she had an incredible heart for God and for people. I started falling for her, but I felt I could not act on it right away because I thought that it would not look good to the other members of our Bible club team. I still had no idea she was dating anyone (clueless), but fortunately for me, they were having problems and fighting a lot and she ended the relationship. Then right after the last club of the semester, I got the courage and asked her on a date. It was December 7 and we went to a Baylor vs University of Texas basketball game. That should have been an omen to her as to how important sports were to me.

After the game, we decided to just walk around the Baylor campus and talk. I was never very good at talking and was very nervous around girls. At the time, I was in the process of memorizing the Sermon on the Mount which is in the book of Matthew, chapters 5,6 and 7. I asked her if she would like to hear me practice reciting it to her. She was thinking that it was just the Beatitudes (which is just the first 8 verses) and she said yes. So, I proceeded to quote the whole thing and finished 45 minutes later. Amazingly she agreed later to go out on another date with me, but I do not recommend that for any other guy. I went home for Christmas a few weeks later, totally smitten and told my mother that I had found the girl I was going to marry. It was a good thing Luana did not know that.

She was not really interested in getting into another serious relationship, but we dated the whole next semester. It was somewhat comical in that at the same time I started pledging a service organization on campus called the Baylor Chamber of Commerce. It was an intense pledging period and part of what we did was to work generally till 1-2 AM (on projects around the campus) and I was also trying to do pre-med and I had to study a lot. Needless to say, I was always tired and sleepy. There were many nights that we did study dates (she was pre-nursing and she had to study a lot as well) in the student union building and I fell asleep. I am not sure what kept her coming back. For Valentine’s Day, I had bought her a jade heart necklace which I gave to her along with a poem that I had written. The last line of the poem said, And time only knows if our love will stand. She showed it to her roommate who started kidding her by telling her that I was in love with her. She countered with the thought that what I meant was spiritual love (that is not at all what I meant). That semester we also had the opportunity to be on the same team as a part of a much larger group of students from the BSU going to Malaysia over spring break on a mission trip. It was an amazing trip and once again I got to see her heart for people and her servant spirit.

Toward the end of that sophomore semester, we could see that the summer was approaching and we were going separate ways. In addition, she was going to nursing school which for Baylor was in Dallas and so would not be back on campus. We had a decision to make. Would we just say goodbye and be thankful for the fun times we had or was this a relationship we wanted to pursue, which would be difficult with the long distance. So, one beautiful day in May we went over to a grassy knoll near the marina and sat down and had a heart-to-heart talk. We discussed what we wanted in life, marriage, kids, work and so much more. It was amazing in that everything we wanted aligned perfectly. As individuals, we were as different as night and day, but our goals in life were as one. She remembers that day as the first time she really realized that she loved me. Of course, I had been in love with her for some time. We decided to continue our relationship, and that was a pivotal time in our lives.

Chapter two

Alzheimer’s – The Disease

2009

So, what exactly is Alzheimer’s? Here is an excerpt from a blog I write:

You may already know about Alzheimer's or you might be like so many of our friends when they found out about Luana's diagnosis. They said I have trouble remembering people's names or I lose things. How do I know if I have Alzheimer's? There is a lot written on this from a variety of sources and I will only give a decent overview, but from the perspective of a physician but also a spouse. Let me start by clarifying something that a lot of people get confused about. Dementia is the broad generic term for a problem with one's cognitive functioning (much like arthritis is a broad term to include many different disease states of the joints). It is a chronic problem, although there are some types that are treatable. Sudden confusional states are referred to as delirium. That is a whole other discussion and does not relate to our topic. Alzheimer's is one type of dementia, the most common type, but it is dementia. However, not all cases of dementia are due to Alzheimer's. Other include Lewy body dementia, fronto-temporal dementia, prion diseases, normal pressure hydrocephalus, dementias due to thyroid disease or to B12 deficiency to name just a few.So when a patient presents with a complaint of memory problems (or more likely the family voices the complaint), the physician first must decide if the person has dementia. Then if so, he or she must try to determine the cause of the dementia. Unfortunately, it is not always a cut and dried diagnosis as there is no blood test like there is for diabetes. Compounding this is the fact that in normal aging we do lose some of our ability to retain new learning. The line between normal aging and dementia can be a very fine one. To truly diagnose dementia there must be defects in multiple areas of cognition. Certainly, the most common symptom is loss of short-term memory. But our cognitive skills involve many other functional areas such as reading, vocabulary, calculations, critical thinking, judgment, following multistep directions, long term memory, creative thinking just to name a few. If short term memory is the only problem then we will not give a diagnosis of dementia but usually call it mild cognitive impairment. It is like borderline diabetes. Many people with MCI will go on to develop dementia but many do not.The physician will take a thorough history (including the help of family members to find out what they have noticed) and do a physical exam to look for other causes of the problems. At this point he will perform a MMSE (mini mental status exam). This is an office procedure which takes about 5-10 minutes and involves a series of questions addressing different areas of cognition. The maximum score is 30 and below 27 is usually defined as dementia. Now it must be pointed out that a MMSE is not diagnostic nor is it very sensitive but it is a good helpful tool and specially to see how people are doing over time using repeated exams. Some people may have early dementia but a normal MMSE. There are other more sophisticated psychological tests that can be done to definitively diagnose these early cases and these are usually done by psychologists.Once the diagnosis is made then the next step is to do testing to rule out other causes of dementia besides Alzheimer's, particularly looking for the few treatable causes. This usually involves blood tests such as a CBC, chemistry profile, thyroid levels, B12 levels or sometimes others depending on the history