Shirley's Journey

Touching the Leaves
Shirley's Journey through the Labyrinth

by Bob Hoffmann - July 1996

Shirley was diagnosed in February of 1995 with "probable" Alzheimer's Disease. The diagnosis was later updated at the Mayo Clinic in May of 1995 to be "probable" Pick's Disease. Both are variations of a class of progressively degenerative neurological diseases for which there is no prevention or cure. Shirley was 50 years old when diagnosed.

The Onset

One can seldom determine when such a journey really begins..... In retrospect, there are always little things that we start to remember once we know the diagnosis. Like her asking about the meaning of blinking red or yellow lights, and in general not remembering how to negotiate the 4 way stops. And insisting that I always wear long sleeve white shirts to work, even as dress codes were becoming more liberal, and worrying about me wearing "jeans" on Friday which was "dress down" day (her father was a school teacher from Kentucky and NEVER wore anything but long sleeve white shirts to work). She seemed to be having more difficulty solving some of the problems associated with her job. There were probably other things that went unnoticed....

Shirley had just turned 50 when she lost the job that she had held for four years as a receptionist in a dental office (this was in February of 1994). She had been having difficulties for a period of several months, and working part-time as a "job share" with another person seemed to aggravate the problem as a high degree of coordination of activities was required. A full-time person was eventually hired to replace them both. Shirley has a degree in Elementary Education from Eastern Kentucky University, and taught school for the first five years after we were married. After losing her job at the dental office, she returned to substitute teaching which took her to a number of different schools around the city. She would ask me to drive her to the school the night before she taught so that she would know how to get there the next morning.

During that spring, she became obsessed over the loss of her job and with her attempts to obtain another position (in retrospect, this was probably due to a diminishing sense of self worth caused by her world beginning to slip away). She was not certified to teach fulltime in Minnesota, so had planned to enroll in a required class, but did not seem to be able to figure out the necessary forms needed to enroll. She had also applied through an 800 number for Airline positions that required a $100 registration fee with the employment company. She was convinced that she was going to be offered a job, and even discussed becoming an Airline Stewardess. I finally convinced her that the job guarantee was not for our area and probably for low level positions in the Twin Cities or even elsewhere. She called them back and was able to get her fee refunded.

In May we began to notice that she had become somewhat forgetful and my daughter and I would joke about her getting old and we would all laugh. But as time passed, we noticed it becoming more of a problem and began to take it seriously. She had also become somewhat lethargic, and started having frequent headaches. We scheduled her for a complete physical with her internist, who found a slight thyroid function abnormality and prescribed synthroid. She was also scheduled for an appointment with a neurologist to investigate the headaches and other symptoms. Over the next month, the synthroid seemed to slightly improve her condition.

In July, she drove from Minnesota to Illinois to meet her sister and mother after which they all left for a one week vacation to visit with relatives in Ohio. Prior to the trip, she asked me to review all the turns off of the interstate to get to her mother's house (although she had driven there a number of times). This did not seem too abnormal to me at the time, since she has never had a good sense of direction, and has needed to do this in the past. But after her return from the trip, I received a barrage of phone calls from her sister, mother, and other relatives in Ohio, full of concern about changes in Shirley's personality that they had perceived (very quiet, did not seem to recall some past events, and seemed anxious to return home). Everyone suspected depression as being the cause, which with the headaches, seemed to increase the importance of the appointment we had scheduled with the neurologist.

The Diagnosis and Decline

The initial diagnosis period ran for about six months, then another 3 months before we could conclude with a second opinion from the Mayo Clinic. We initially saw the neurologist for the frequent headaches, but also mentioned the signs of memory lapse and personality change. He ran the standard memory evaluation, which she passed with flying colors (I sat there trying to remember the three things he told her to remember prior to asking her a list of other questions, and at the end I could not remember one!!). She was put on an antidepressant to help the headaches and a couple other tests were scheduled, including some time with a psychologist. As we discussed some of the possibilities with the doctor, the "A" word was brought up for the first time. I quickly tried to dismiss it because of her young age, but the doctor indicated that it was occurring in younger people more frequently than most think. Shirley's reaction was "What could be worse than that?". We left still feeling that a combination of the thyroid condition, early signs of menopause, and maybe some mild depression from the passage through mid life (we had an empty nest now with our last child in college) was the real cause.

Over the next several months, the various tests continued to come back negative. Slowly the possibility of the "A" word coming back into the conversation began to increase although it was unspoken. There was also a progression of the symptoms throughout the fall and winter.

She became unable to clean house or cook. I remember asking her about one of the bathrooms that was getting in very bad shape, and showed it to her. She looked up at me and asked "what do I do?". The realization of her decline struck me with those words and I choked up. It was clear that she had forgotten how to accomplish simple tasks around the house.    She could no longer follow recipes, frequently mixing the ingredients incorrectly, resulting in the food being thrown out. Gradually, she began fixing only foods out of the box that could be warmed in the microwave such as one of her favorites; hot dogs with sauerkraut. I took over the house cleaning and cooking tasks (we ate out a lot).

Her driving became risky and she limited the places she was willing to go, eventually getting to the point where she would start to the Mall across town, and turn around and come back. Once in the winter when I was returning from a business trip to the west coast, the plane arrived late in a bad winter storm. She had called relatives all over the country to see if they knew where I was at. I drove home from the airport to find her missing, as she had gotten confused about my schedule and tried to drive to the airport to search for me. She could not find the airport in the storm (drove by it) but managed to get back home safely. As time went by, a small super market about eight blocks from our house with a small parking lot, became the last destination to which she felt comfortable driving. As though trying to exercise some degree of independence, she would drive there three or more times a day, just to purchase a pack of gum. She had one very close incident in our neighborhood where she dropped something, leaned down on the floor of the car looking for it and almost had a head on collision with a neighbor who was frantically honking her horn. We were lucky to have stopped the driving before an accident occurred.

She had always been an excellent card player, and we were part of a card club that met monthly to play 500 (a game popular in the Midwest that involves bidding, trumping, etc.). We played in October, and she did fine, making only a couple mistakes that one might do if they were not paying close attention. At the next game in February 1995, she made many obvious mistakes (not following suite, forgetting trump, bad bids, etc.) and that was the last time we played cards. You could tell that she was not having fun anymore.....

She became uncomfortable in social situations, quickly dropping outside the conversation and sometimes being ignored. She became very attached to me, staying close to me at social gatherings, and calling me frequently at the office. I bought her a bag of valentine hearts with verses on them around valentine's day, and she would call me at work and read one to me like "My True Love!".... and I would ask "who might that be?".. she would answer "you!!" then laugh and hang up. A short time later she would call me back with another one. I remember sitting in my office after these calls with the door closed and tears in my eyes.

She developed an obsessive fear of being abandoned. We have always had a great relationship, and I can only believe that this was triggered by fear and insecurity she developed as she recognized that she was losing her abilities, and that the future we had planned together was slipping away. She would pick a friend or relative that she remembered having gotten a divorce and would ask me "why did they get a divorce?". I would explain as best I could, and she would reply "will we ever get a divorce?". I would reply "no.. we will never get a divorce". A day or two later, this would come up again, and so it went on for a period of four months or more.

She would wear the same outfit every day for months at a time. She got a new sweater for Christmas and wore it almost continually for three months until it was about worn out. She would take off and wash her clothes when they needed it, but then put them right back on. She would iron her clothes 3 or more times a day, to keep all the wrinkles out.

She lost most of her organizational skills. At Christmas time (1994 prior to diagnosis) she sent two or more cards to many people before I caught her (realized it when she kept sending me to the store for more cards and stamps). Each day, she would start through her address book (again) and send out cards. She volunteered to coordinate the neighborhood March of Dimes drive, which she had done in previous years. But this year she could not figure out the directions for sending out the requests, and sent out just the return envelopes with no explanation. Also at this time, we found that for short trips (like to see her mother at Christmas) either my daughter or I would have to select and pack her clothes and other articles for her.

Beginning in the fall of 1994, she developed an obsession over stepping on cracks (you know.. "step on a crack and break your mother's back!"), although she was still fairly cognitive and appeared normal in most ways at this time. She would laugh when I would point it out to her, but it remains yet today. At the mall, she would always step over the cracks in the floor tile, and walk around large areas that have the smaller tile where you cannot avoid the cracks. At home, she quit walking on our entry foyer, because it is covered with small tile. She detours through our dining room and living room which are carpeted, and then carefully steps on the throw rug in our foyer by our front door to get to our staircase to go upstairs. This really baffles people that come to the house who wonder why she takes them that long route to get to the family room at the back of the house.

With the progression of the symptoms, and negative test results, it was not a surprise when in February 1995 we received the first diagnosis of "probable Alzheimer's disease" . We were still somewhat in shock, due to her age. Friends and family were also in disbelief. I was a bit upset over the way we were first notified of the neurologist's conclusion. As we were proceeding through all the various tests, we have had to continually go back for the results (we were never notified), and several weeks after the final test (a spinal tap), I called the neurologist and left a message for him to call me at work with the results. Instead, he called Shirley at home and notified her that the test was negative and that she probably had Alzheimer's disease.... She immediately called me at work and told me about it and said "They think I have Alzheimer's, What could be worse than that?". With the notification, came no other information or other direction. For someone 50 years old, a diagnosis like this is a terminal sentence and deserves more than that. I called him back and requested a referral to the Mayo Clinic for a second opinion.

Reality sets in...

Even though we were going through the motions of getting a second opinion, I was beginning to face the reality of the situation. Additional tests and opinions were in order, but it was clear that any chance of getting a more favorable diagnosis was slim. It would take us a couple months to get scheduled with the specialist at the Mayo Clinic, even though we lived in town. I felt it was time to start getting our affairs in order....

I had an opportunity to take early retirement from the Fortune 500 company for which I was working, and submitted the papers. There were pension options that needed to be decided, and now I had a situation where the life expectancy of my wife could be as little as 3 to 5 years. What if I died before she did? What if she miraculously survived another 10 to 20 years? Could I afford to become a full-time caregiver? Could I afford not to? I had some gut wrenching decisions to make, and none of them included our dream of taking a cruise or buying a retirement home anymore. It took a series of runs at spread sheets, evaluating the alternatives, before I finally crossed my fingers and plotted our course. I retired on March 31, 1995, and on the following Monday started working for another smaller company, not knowing how long I would be able to continue to work. The new job required that I be out of town three nights a week, which at this point was not yet a problem.

We made plans for a week of vacation in Panama City Beach, Florida, where my son was working. Given Shirley's rate of decline, I knew that this could possibly be our last chance at this, and it would occur just prior to our appointment at the Mayo Clinic. We also notified our daughter, Niki, who was a sophomore at the University of South Dakota, of the current diagnosis (see her Journal notes ). Shirley seemed to gain new energy for the trip, and her headaches started to subside. I had begun to suspect that much of the basis for her headaches was the stress that she felt in not being able to perform her normal activities, and the fear or sheer terror of experiencing her world slowly slipping away. When we got to Panama City, and saw our son for the first time in a year, he was quite taken back with his mother's condition. He recognized a much more substantial change in her personality than I had, since I was with her while the change was taking place. Some friends met us there and we had an enjoyable week of early morning walks on the beach, sipping diet cokes while watching the sun set in the evening, and sucking oysters which is a popular custom of the area.

The tests at Mayo Clinic were all performed in a week's period. I had written a letter prior to her exam describing her history of symptoms as best I could and voicing some specific questions we had regarding the headaches, thyroid function abnormality, and early menopausal symptoms. The neurologist making the initial diagnosis had also written a letter and passed along the original test results.   Just based on looking at this aggregate of information, the initial conclusion from the Mayo Clinic specialist was that he agreed with the diagnosis. But, because of Shirley's young age, he wanted to rerun a number of tests, adding a lengthy psychological exam to rule out depression. The conclusion from these tests, in late May of 1995, was a change of the diagnosis to "probable Pick's disease". This was based on the results of an MRI that showed atrophy occurring in the frontal and temporal lobes, the type of personality changes, and what appeared to be a complete lack of insight. By this time Shirley seemed to be blocking out any further acknowledgement of her condition.....

The Apartment

For a brief moment, I considered moving us to Mankato where I was currently working. Since it was a 90 mile drive, I took an apartment and would stay over there a couple nights a week. Shirley had agreed to go with me one week and we were all packed to go on a Sunday afternoon. This was a big step for her, but at the last minute she completely fell to pieces saying she had severe headaches and could not go. Not in our 30 years together do I remember her being that terrified. I immediately told her that she did not have to go and that I would stay with her in Rochester. She ran and unpacked her suitcase as if I might change my mind. After she calmed down and we talked about it, she decided that maybe she could try it for one night, if I promised to bring her home the next night. We got in the car and left for Mankato.

Once we got to the apartment, and she became familiar with it, her fears seemed to subside. I immediately let her call her mother to tell her we had arrived.. She talked to her mother for a half hour describing the apartment and discussing our trip. At the end of the discussion she hung up and sat down next to me with a big smile on her face. I asked her what her mother had said (since they had talked so long) and she answered "Mom told me she loved me...." and that was it. By then we had come to understand the importance of using that phrase "I love you" frequently with Shirley. As it became familiar, she seemed happy and content with the apartment for the remainder of the night. By the time I got back from work the next day, she had decided that maybe she could stay for ONE more night.... but soon it was Friday, and she had made it the entire week! After that week, she would readily go and stay with me periodically throughout the summer.

Shirley's decline continued. While at the apartment, I discovered that she was having difficulty working the shower. What appeared to be a fear of water, turned out to be a problem negotiating the temperature properly, and also the height of the shower head itself. When she would stay with me at the apartment, I would come home at noon and help her adjust the water temperature so that she could take a shower and then we would have lunch together. Back at home in Rochester I replaced the shower head with one on a flexible hose and sliding bracket that could be raised and lowered, and always lowered it for her. I also reduced the temperature on the water heater.

During this period she developed a "sweet tooth", and her weight began to rise. At this point, I did not attempt to control what she ate as long as she was happy. We would attend the $1 movies at the mall during the week in Mankato to have something to do in the evening. Shirley could not follow the movies by that time, so it was more of a social outing than anything else. We would sit and eat popcorn together and split a giant diet coke. She would frequently make rest room runs during the movie, and I discovered that this was more of a way for her to exercise a degree of independence rather than a necessity. She would come back thrilled that she was able to find her own way. When we would enter the movie theatre, I would always orient her toward where the rest room was located before we would actually enter the cinema area. Sometimes we would even select a movie based on the rest room location. I was always left feeling a bit nervous until her return.

As the summer passed, it became clear that moving was not a possibility, and that I would need to give up my job in Mankato. Shirley's condition required that she stay in the neighborhood with which she was familiar and around old friends. My daughter was home for the summer which allowed me to continue to work until September, at which time I resigned my full-time position. I continued to work part time for another six months, traveling to Mankato only 2 days a week, and on those days, hiring a Home Maker Assistant to stay with Shirley for a portion of the time and help with the house work. A primary duty was to take Shirley to the Mall for lunch at the Chinese Restaurant in the food court which was one of her greatest pleasures at this time. My attempts at Accessing support through Community Services during this period are described in a separate document. Eventually, spring came and her condition had declined to the point where she needed 24 hour care. I terminated my relationship with the company and became her full-time caregiver.

Touching the Leaves

Shirley's communication skills declined to the point where she used very few words and spoke too softly to be heard. She no longer would converse, but would sometimes repeat words that you say. There was a period where she used the word "umbrella" as a substitute for other words that she could not recall. She also began to "chant" as if it was a calmer, repeating the word "anyway" over and over. And she no longer pretended to recognize people, although she would respond positively to anyone that smiled at her (and would likely give them a hug). She began making screeching noises when anxious about something. This started to prevent me from being able to take her out as much. At the mall food court while we are waiting in line for Chinese food, she would frequently get impatient and scream. Once we were following a lady through the line who was obviously annoyed and unsympathetic with Shirley's behavior. So after she paid, she intentionally blocked the register while she fiddled with her purse, knowing the wait was making Shirley more anxious.   This anxious behavior was also exhibited when she became frustrated while trying to communicate with someone, looked at herself in the mirror, or was just trying to get someone's attention.

She began hitting people occasionally.    She did this in a playful way, but the intensity could increase until it hurt. This was a problem as she played no favorites, hitting my daughter and son when they visited, as well as "patting" her friends that visited. Many times it was just a "fanny" pat, but also on the back. Somtimes when I was sitting down, she liked to hit me on the top of my head on my "empty spot" as she would call it. Once while leaving a super market we walked past a lady bent over looking for a movie in the video rack... Shirley spotting this as an opportunity reached out and gave her a firm whack on the fanny when we went by.. Luckily the lady realized that it was not ME. Although she had friendly intentions, this became somewhat of a problem. Her high level of activity had also kept us from trying her in an adult daycare surrounding that had predominately older more sedate residents.

Shirley was still in good physical shape, as we walked several times a day for a total of four miles or more. Walking was a time of sharing for us, even without a lot of words being spoken. And as she declined, one of the few experiences that we could still enjoy together. During these walks, she began gently touching the leaves on the trees and bushes as we passed. She would sometimes leave the sidewalk and enter into someone's yard to get to a bush that caught her eye, after which she wouldl stand in front of it for a moment and then touch the leaves and return. I have read that dementia victims in later stages like to touch objects. Maybe that is the reason.... For me it was pleasing to see the enjoyment she was getting from the walks, and I made no effort to hurry her along. In a sense, it was like watching a small child discovering the world for the first time.... or maybe her way of saying good bye, as the world continued to slowly slip away.....

The journey continues...... "Monthly Journal" begins September 1996.
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