STEVE: “I felt like I was diminishing somehow. Things were getting worse already, and I felt like I was unfulfilled. I felt that I was coming to an end, and there was nothing else there to fill in the empty parts. The job started being less important to me, as well as other matters, such as getting things done on time, and deadlines for tax reports. I feel like I would have been fired somewhere along the line, if I were working for anyone but my wife.”
Flashback to 1980, Steve at age thirty:
“I felt like I was in a box and that everything had to be done ‘just this way,’ and it wasn’t enough for me. Getting the reports done just didn’t mean that much anymore. I did what I could do, but I was happy to quit Comprehensive Care Center. I think that they were saying, ‘Good! He is going away.’ I was free of the everyday stuff and happy to leave.”
In retrospect, there may have been signs of memory issues as far back as age fourteen. Steve wanted to play football but couldn’t catch on to the rules. He remembers the coach yelling at him, “Get in there; get in there!” He had no idea what he meant, so he quit. Steve also recalls, “I wanted to be an altar boy in the worst way, but couldn’t get it right. I just couldn’t remember the routine of what I was supposed to do after several Masses, and so the priest ‘fired’ me!”
In the early years of our marriage, Steve had terrific difficulty catching on to the simplest card or board games, and he would avoid playing whenever possible. If he was my partner in a game, I would have to help him with every move. I was mystified that someone who was otherwise so intelligent could have trouble playing cards. Were these very early signs that something was wrong? A recent study suggests that some people who develop dementia have a lifelong problem with memory (Flory, 2000). Another study showed that people who are at risk for Alzheimer’s based on family history may have an abnormal PET (positron emission tomography) scan as early as twenty years of age (Reiman, 2004).
When we were in the process of moving to Charleston, Steve applied for a job as a manager in the city’s recreation division with high hopes, which were dashed when they chose someone else.
STEVE: “I felt like this ‘Yankee boy’ was never going to fit in. I put an ad in the paper to do personal taxes and had two responses. I felt like I botched both of them. I took a job as a real estate agent, and that was a disaster.”
Considering that this was 1980 and the mortgage interest rates were at an all-time high of up to 18 percent, it was no surprise that real estate didn’t pan out for him. There were no commissions, no pay for eight months, but then he had some modest success selling condominiums on the Isle of Palms.
STEVE: “I saw no future in real estate for me. I was in the wrong job.”
A few years later, Steve had some difficulty remembering to take the girls to various appointments and lessons while I was working. I often called to remind him of a specific appointment, and even then, a mere half hour later, he would sometimes forget. To remind himself, he began to hang notes on long pieces of tape in the doorway to his office, a tactic that was effective for several years. I thought this was just a “guy thing.”
Then, between 2001 and 2002, he began having trouble with the payroll. Mistakes became more frequent, and I began to sit down with him to double-check his calculations. I thought it was simply that our practice was more complicated, with more employees, and he had managed to get it right for the previous twelve years.
STEVE: “Thank God, there was someone else who could figure this out. I was just lost, freefalling. I think I knew I was lost by then. I should never have been an accountant anyway!!”
Steve used stalling tactics to avoid completing tax reports, spending time organizing his desk and shuffling things around in his office for several days before buckling down to get the job done. With his love of the outdoors, he often said he should have been a forest ranger.
As he was losing his accounting skills, Steve gradually taught me to use his computer program to write checks, do payroll, and print out various reports. At first, I learned all of this to help him, later to double-check and correct his work, and eventually to do the work myself. At that point, my practice was smaller, with just a few employees, so it was easier and less time-consuming for me to cut four checks or print out a 941 quarterly report than take records to another accountant to do.
Part of Steve’s job routine was to go to the bank to make deposits and pick up the mail from our post office box every week-day. But then the mail, including collections from our medical billing, began turning up in odd places. When asked if there was any mail on a given day, Steve began to have difficulty remembering if he had even gone to the post office, which seemed rather odd.
Around the same time in 2002, Steve sunk into a severe bout of depression, another early sign that something was amiss. Our younger Joanna was a temperamental teenager at that point, and it seemed logical that his depression was somehow connected to a change in their relationship and behavior toward one another.
STEVE: “I lost a lot of my confidence for doing everything. I had given up on having anything better. I was lost and basically became a cripple, because nothing was working.”
Steve and I talked many times about what other job he might pursue, the possibility of going back to school, and other options, but by that time he could not garner the interest or energy to make such a change in his life. Even our once beautifully landscaped yard became overgrown and out of control.
We engaged in family counseling, and the psychiatrist evaluated Steve specifically with regard to his memory issues. He explained that it could be dementia, but that depression can also be the cause of memory issues. He prescribed antidepressants for Steve, who found some help with individual counseling. However, over the next year or so, it was apparent that depression was not the whole story.
In 2003, our lives took an unexpected turn as we made a very complicated decision to move from our home of sixteen years to Spring Hill, Florida, two counties north. Hospital mergers were affecting my practice in such a way that I would soon be expected to cover several hospitals, one more than an hour away. Spring Hill Regional Hospital had built a newborn intensive care unit (NICU) but didn’t have a neonatologist to provide the necessary physician services. By taking this position, I would once again have the opportunity to open a new NICU and bring desperately needed services to a semi-rural community. Our daughters could continue to attend their respective schools. With deeply mixed emotions, we uprooted our family to move to Spring Hill.
Within months of moving, it became apparent that Steve was suffering from more than depression. I called our local Alzheimer’s Family Organization and asked them to recommend a neurologist who cared for people with memory issues. We made an appointment, and the doctor evaluated Steve for various conditions that might cause his symptoms. He had blood work, an EEG (electroencephalogram), and an MRI (magnetic resonance imaging) study, all of which were normal at that time. The doctor performed a Mini-Mental Status Exam (MMSE), a 30-point memory test (Folstein, 1975). Nearly everyone who is normal scores a 29 or 30 on this very simple test; however, Steve only scored 23. The doctor advised us that this was consistent with possible Alzheimer’s disease, but didn’t want to put this label on Steve’s condition just yet. To make such a diagnosis, it is important to see worsening over a period of time. The doctor was also reluctant to start a dementia medication such as Aricept at that point because it would mean a lifetime commitment to taking the drug. He explained that if a drug such as Aricept is started and then stopped, the person could experience a sudden deterioration from which he might not recover, even if the drug is restarted.
The doctor reevaluated Steve every six months, and in 2005, as his symptoms worsened and his MMSE score dropped to 21, the doctor decided to place him on Aricept, a cholinesterase inhibitor. Cholinesterase inhibitors slow the metabolic breakdown of acetylcholine, an important brain chemical involved in nerve cell communication. In 2006, after an evaluation at the Johnnie Byrd Alzheimer’s Institute in Tampa, the drug Namenda was added to Steve’s growing list of medications. Namenda appears to protect the brain’s nerve cells against excess amounts of glutamate, a messenger chemical released in large amounts by cells damaged by Alzheimer’s disease.
The following are some of the signs and symptoms that developed over the several years leading up to Steve’s diagnosis of probable Alzheimer’s disease.
Steve began to lose things in his garage and would spend hours looking for a tool or other object. You need to understand what his garage was (and still is) like! It is overwhelming to open the garage door to the disheveled mess. To start with, as you enter the doorway, there is an obstacle course. No matter how often we work together to create logical pathways, they disappear within a few days. There is no rhyme or reason to where items are located, as they are piled miscellaneously into giant heaps. Steve cannot part with anything, believing that someday he will need it. The problem is, when we do need one of these treasures, we can’t find it, or if we do find it, it is rusted and nonfunctional or missing an important part. There are duplicates and triplicates of tools, many in their original wrapper or box.
Bringing all this “stuff” to Spring Hill was an expensive and very time-consuming nightmare, but Steve could not part with it. We stored it in the three-car garage of our temporary home and three-storage units, eventually moving it into the garage of our new house. We built a home with a separate detached garage for Steve and his things and an attached garage that was supposed to be for cars only. It was six months before there was room to put even one car in the attached garage. That is a lot of stuff! I have talked to others who have a spouse with dementia who have experienced a similar problem with hoarding, and I often wonder if this is a symptom of the disease for some people.
When Steve decided that he wanted to tow a trailer behind his truck to take things to the dump, he would spend hours looking in the garage for the hitch.
STEVE: “‘I’ve got to find it, dammit, where is it, why are you doing this to me? I’ve got to find it,’ would go through my head the whole time. And that didn’t help. It was the angry me. I was yelling at myself. Fatigue would finally make it stop and get the demons out of my head.”
Sometimes he would go out and buy a duplicate of the item he couldn’t find, and at other times, he would just give up doing the job. He would sometimes begin to look for “something” before I left for work and would still be searching when I came home much later in the day. At that point, he could not even remember at times what the “something” was that he was looking for, and he was extremely anxious and ready to pull his hair out. I told him repeatedly that he should just move on to something else instead of wasting so many hours looking for “something.” On one occasion, I found the hitch he was looking for all day, disguised in green bubble wrap on the back seat of his truck—a logical place to keep it, but not a logical way to disguise it.
Losing his keys and wallet became a frequent occurrence. Steve would often unload his pockets in the garage, and his wallet and keys would disappear for days to weeks at a time. We could never be sure if they were simply lost or stolen. After moving to our newly built house, Steve lost his wallet three times in just over a month. The one credit card he still carried had to be cancelled three times, and we decided that it was time for him to give up the card. He carried a debit card while he was still driving so that he could purchase gas or stop at the grocery store, but when he stopped driving, it was time to retire that card as well.
STEVE: “I couldn’t find anything. I was so stymied, I didn’t have a clue.”
Attempting to organize his garage and searching for tools and other items became Steve’s full-time job.
After moving to Spring Hill, Steve bought himself a second, longer, sleeker kayak that he ordered from a catalog, with all intentions of exploring the new waters. But he began to spend a lot more time reading magazines about kayaking, and talking about kayaking, than actually getting out and doing it.
Before Alzheimer’s disease set in, Steve could find any place almost by instinct; he could “follow his nose,” as we often said. When we moved to Spring Hill in June 2003, a small town with just a few main arteries in an easy-to-learn north/south and east/west pattern, Steve had tremendous difficulty finding his way around. He was often confused about whether we were heading north or south and which street we were on. He did manage to learn the way to his favorite places—Home Depot, Sam’s Club, and a few others—but if he had to go a little beyond familiar territory, he panicked.
We discovered that Steve could no longer read a map when he had to drive himself to see an endodontist about thirty minutes away. The office staff had to “talk him in” after he drove around randomly in the general area, hoping he would find the office, and he was forty-five minutes late. I was at the hospital that day, and when he left the office, I stayed on the phone with him to help him get home.
After that episode, Steve limited how much driving he did by himself, even to familiar places. When we were riding together, he continued to drive most of the time for a while, though he often forgot where we were headed and asked me which way to turn. I began to call him “Mr. Opposite” because he would turn left if I told him to turn right. This phenomenon occurred with other situations in which he would do the opposite of what he meant to do. It was as if he figured he had a fifty-fifty chance of getting it right, and he would take that chance, rather than endure the embarrassment of asking again what he was supposed to do. I began to drive if we were headed anywhere that was the least bit complicated. Finally, it was a relief to both of us when I decided to take over all the driving.
One of the most frightening things that happened as the disease worsened led to the decision that Steve must stop driving. Joanna took a road trip by herself to visit a girlfriend in Tallahassee and broke down by the side of the expressway, about four hours away from home. The car was towed to a nearby gas station. A friend, who was a car mechanic, volunteered to ride with Steve to help her repair the car. I was on call at the hospital and couldn’t ride along. After the job was completed, Joanna’s friend jumped in the car with her, leaving Steve alone in his truck to follow her. About the time I expected to hear him pull into the driveway, I received a phone call from Steve advising me that he was in Jacksonville, several hours in the wrong direction on the opposite coast of Florida. It was about 9:30 P.M. and dark. I asked why he hadn’t gotten off and turned around sooner. He said that he “couldn’t get over” and missed each of the exits the entire way to Jacksonville.
I stayed with Steve on the cell phone until I was sure he was headed west on I-10 and then called him about an hour later to make sure he headed south on I-75, fearing that my next call would be from Cincinnati! He managed to exit in the wrong location again, and we decided that he should spend the night in a hotel that he spotted. He started out at daylight the following morning and stayed with me on the phone until he arrived in our driveway, just before I needed to leave for the hospital. I was very happy to see his face and wondered what would have happened if he did not have a cell phone. I think about how many families lose their loved ones this way, with no cell phone available, and the extreme panic they must endure until they are found.
When Steve arrived home, he handed me the keys, and we mutually decided that driving was no longer an option for him.
STEVE: “So they got one more bad driver off the road!”
The decision to stop driving affects not only the victim of the disease, but also the spouse and/or other members of the family, who must pick up additional driving responsibilities, take over errands, and get the person to wherever he or she needs to go. I remember thinking about the ramifications of how I would be affected when Steve could no longer drive and dreading that day. Every errand would now become my job, I would have to take him to all of his many appointments, and this would all have to happen on my relatively few days off, contributing even more to the general overload I was already experiencing. For this reason, I can understand why it is often so hard for the family to take the keys away. It is even considerably more difficult when the person is oblivious to their illness and doesn’t comprehend why driving is no longer a viable option. Fortunately, we did not have that problem with Steve. He didn’t like it, but he knew that he had to give up driving for his safety and that of everyone else on the road.
An avid reader, Steve often spent time in the sun, reading one novel after another. His favorite authors over the years were Stephen King and Clive Cussler. He read through the newspaper every day and never missed the comic strips, a common topic of discussion at the breakfast table. As he began to have difficulty remembering the day of the week and the date, he used the newspaper as a reminder, until eventually that didn’t help and he no longer cared.
Until a couple of years ago, I bought novels for him for Christmas and his birthday, but they began to pile up unread. At first I thought he had simply lost interest or perhaps had too much trouble retaining the plot line or comprehending what he was reading. Even with the comics, he would pick up the paper, look at it for a few seconds, and then put it down. He said they just weren’t funny anymore, and so he stopped reading even the simplest material.
I assumed for a long time that it was a problem of comprehension, but eventually I learned that there was a physical reason for this problem. I had a brief insight into Steve’s visual disturbance during a return visit to the Johnnie Byrd Alzheimer’s Institute in May 2008. He was waiting in a hallway for me to come out of the lady’s room, and when I joined him, he pointed to a thermostat on the wall and told me that it was “jumping around.”
Steve tells me now that he could not read because the words appeared to be moving around erratically. It was impossible to read anything with so much movement when he tried to focus on the words.
STEVE: “The words would become little squares, like pixels on a TV screen, and move rapidly in all different directions. I would see the word in a block and then it would go someplace else. It was not under my control at all. I don’t think people would notice that my eyes were moving. It was just inside of me. It was four, five, or six blips or blocks. This would happen and then suddenly it would stop. There is no name to describe it.”
The closest comparison I can think of would be during bad weather, when the picture on a digital TV breaks up, like a cubist painting, and the blocks rearrange. We visited an ophthalmologist and were reassured that there was no anatomic reason related to Steve’s eyes for his reading problem.
As the disease progressed, Steve found it more and more difficult to have an ordinary conversation, even with me. His jaw would often tremor as he tried to find the words.
STEVE: “I would stumble over words. I couldn’t get the words out. I would stumble over finding the words to make some sense, and I just gave up. I don’t think I could remember what I was trying to say for more than twenty seconds. I was probably able to retain a little bit more of what someone was saying to me, but it didn’t stay with me. I would get out the first few words, then I would say, ‘What was I saying?’ and it would be gone, like chasing a rabbit.”
Steve participated less and less in conversation. He did not like being in a situation with a lot of people.
STEVE: “Who in the world would want to talk to me? I was not comfortable with speaking to adults in those situations.”
I am the kind of person who needs to ventilate when I get home from work, and at the beginning of our marriage, Steve would cut me off and tell me he wasn’t really interested in hearing all of that. However, I convinced him that I needed this time from him to help reduce the stress, and Steve agreed to put up with fifteen minutes of a nonstop rundown of my day, after which I could let it all go and move on. I am sure he sometimes tuned me out while pretending to listen, but nonetheless, it was very therapeutic for me. On the other hand, Steve would often listen intently, make appropriate comments, and provide good advice about various problems. As the Alzheimer’s disease worsened, his comments often did not relate to the conversation, and I felt like he was on a different wavelength. At that point, I began to feel a sense of loneliness. His personality was fading, and he was going away. He seemed more and more like a stranger to me, and I felt like I was slowly, but surely, losing my husband.
When I would say something to Steve, even a short sentence, as clearly as possible, he would often cup his ears and say, “Blah, blah, blah, blah, blah?” which indicated that I needed to repeat, sometimes more than once. I do not think he had an actual hearing problem, but rather a problem with comprehension. He doesn’t remember doing this, and so he can’t explain now what was going on in his mind, but this rarely happens now.
It can be very stressful on a spouse to repeat virtually everything you say. At first I thought Steve was deliberately ignoring me or simply not paying attention, but eventually I learned to accept that the words were just not sinking in. I also came to realize that it helps to get his attention, make eye contact, and keep it simple. Now, if I need Steve to do a series of things, such as getting dressed to go out, it helps to suggest he do one thing, such as picking out a shirt, and when that is done, suggest the next step—picking out a pair of pants—and then help him find a good match.
A recent study showed that people with dementia do not like to be spoken to as if they are children and are more likely to resist assistance if approached in that manner (Williams, 2008). However, it is not easy to keep it simple and still speak to someone at an adult level.
Steve was a creative cook and frequently made meals for our family for many years. In the beginning of our marriage, he bought an encyclopedia of Chinese cooking and learned to use a wok in a skillful manner. He liked to make a breakfast of eggs and add whatever was leftover from the day before. He often added ingredients that weren’t in the recipe, and his experiments were nearly always successful.
After we moved to Spring Hill, he cooked less and less often. When I was working, he sometimes put a boxed meal into the microwave and forgot it was there. I would find it much later when I got home or even the following day.
Our temporary home in Spring Hill had an electric stove, but after experiencing a three-day blackout related to a tropical storm, we decided to put a gas stove into our new home, so that we could continue to cook should a similar situation occur. In the summer of 2005, when we were building, it was becoming more obvious that Steve’s memory problems were progressing. Shortly after we moved in, I came home late one evening and noticed an unusual odor. Steve had turned the knob off in the wrong direction, and with the stove on the lowest setting, propane was leaking. As we aired out the house, I wondered about the wisdom of installing a gas stove.
Fast forward to two years later, early in the summer of 2007, after another long day at work, I arrived home in the late evening to the odor of something rotting. This time, it smelled as if something died in the attic above the kitchen. Our kitchen and family room are one large area, where we spend most of our time in the mornings and evenings. A pest-control technician, who came into our house for an unrelated reason, concurred that something must have died, but stated that, worst case, it should dry up in a week. About thirty-six hours later, I decided to cook something on the stove and realized that, once again, Steve had used the stove and turned the knob off in the opposite direction (Mr. Opposite!), allowing the gas to leak. Fortunately, our bedroom is on a separate air conditioner zone. Since then, Steve rarely cooks and never without direct, by-his-side supervision. His “cooking” is limited to cutting things up for me and stirring the pot while I’m beside him working on something else.
Late that summer, we were into one of our busiest months ever with deliveries and admissions to the NICU. We had taken a very nice vacation to California, but as is often the case with hospital-based physicians, if you take time off, you have to make up the days later in the month. For the next twenty-one days, I had only three nights off, and virtually every day, I worked late into the evening or was called back before I could get dinner ready. Prior to our vacation, Steve was usually capable of putting a meal together for himself. When I finally arrived home, I would ask if he had eaten, and his answer was always in the affirmative and that he wasn’t hungry. However, at the end of August, he began to look rather thin, and we discovered that he had lost ten pounds over three weeks. I started looking for evidence that he had eaten dinner, and finding none, I realized that he was no longer cooking for himself for lunch or dinner.
Sudden weight loss can signal the beginning of a serious decline in Alzheimer’s disease from which the person never recovers. Steve had been placed on Aricept and Namenda several years earlier, with the hope that these medications would slow his decline and eventually something better would come along. It seemed like new drugs to treat Alzheimer’s were just over the horizon, with so very many drug studies in progress. Steve’s doctor changed him from Aricept to Exelon, another cholinesterase inhibitor, to see if it would make a difference, but there was no noticeable effect.
With Steve’s ten-pound weight loss, I began to lose hope that a medication would come along that would hold off the inevitable decline. At age fifty-five, I fully expected to be a widow by sixty. I tried to mentally prepare myself that I would very likely spend the later years of my life without Steve, whom I naturally expected to grow old with. We often talked about traveling, as many do, when they retire. But I know that, if I am fortunate enough to have Steve still with me when I retire, travel will be virtually impossible. One’s vision of the future changes rather significantly when Alzheimer’s disease enters the picture. Lois Walsh, a caregiver of a spouse with Alzheimer’s, expresses that so well in the following poem:
LOSSES
I am lying here crying, alone with you beside me.
Crying for that little girl and the woman I am.
Covered with years and weighted down with words.
The little girl was happy, believing in Santa, Til death do us part, and words like forever and always.
I am crying for her losses: Lost dreams, lost love, lost time, lost health, but most of all lost hope.
Thereafter, I made sure Steve had a very good breakfast and prepared a lunch that could sit out on the table, with the hope that he would notice it and eat it. Sometimes he did and sometimes he didn’t. He had a habit of peeking into the refrigerator to nibble, so I kept plenty of fruit and yogurt available to tide him over until I was home and could cook. I had to work out a plan to have someone stop by when I was at the hospital, usually our younger daughter, to make sure he had his lunch.
During the last couple of years before starting the coconut oil, Steve often ate ten to twelve pieces of fruit throughout the evening. Since learning about the possible problem of glucose (blood sugar) uptake into neurons that occurs with Alzheimer’s disease, I wonder now if his consumption of so much fruit was the result of a craving for glucose (Klein, 2008; Zhao, 2008; de la Monte, 2005). Steve had normal fasting blood sugars on several occasions, ruling out diabetes as the source of his weight loss and fruit consumption.
The reason I bring this up now is that the intense craving for something sweet, in this case fruit, could be a symptom of Alzheimer’s disease and other neurodegenerative diseases that share this pathology. My maternal grandmother died at age ninety-three of “senile dementia,” which was most likely Alzheimer’s disease. She would put multiple layers of clothes on and then complain that it was hot! Like Steve, she seemed to have a craving for sweets. She would drink many cups of tea in a day’s time and would add as many as a dozen teaspoons of sugar to each cup, complaining that it wasn’t sweet enough. Another relative in my family, who also died with dementia, had a problem with alcohol, drinking at least a gallon of beer a day and an unknown quantity of whiskey. It has occurred to me that perhaps some cases of alcoholism could be more about a craving for the sugar in the wine, beer, or hard liquor than the alcohol. The alcoholic beverage just happens to be the source of the “carbohydrate of choice” that person has latched on to.
I came across a study showing that people who drink alcohol to excess develop dementia seven years sooner than those who don’t. Could it be that the craving for alcohol is an early symptom of, and not necessarily a causative factor for, the onset of the disease? Of course, the excess alcohol wouldn’t be beneficial to the neurons—quite the contrary.
Wondering if this sugar craving is a common symptom for Alzheimer’s disease, I started a thread on one of the Alzheimer’s message boards, asking if others noticed this about their Alzheimer’s disease loved ones, and sure enough, many responded in the affirmative:
TR: “My loved one never ate sweets, but craves them now …”
SC: “Sweets are the food of choice for Charlie … who has been diagnosed with garden-variety Alzheimer’s disease. He grazes on them throughout the day but finds additional room for three smallish meals. The number of calories he consumes in a day must be astronomical.”
SN: “My mother died weighing eighty-five pounds. Toward the end, her doctor told us anything we could get her to eat was fine.
We concentrated on sweets as she loved them and, in fact, the last thing I fed her the night before she died was a bowl of ice cream … Mom loved candy bars, ice cream, cookies, sweet and sour chicken, and her wine at night.”
TL: “OMG [Oh, my God]!!! My mother is a junk-food junkie … I have never seen anything like it … Mom has vascular dementia and is in the sixth stage … My mom will eat between a half and one gallon of ice cream in a day. No lie! Then she will eat pastries and cookies and whatever else she can get her hands on … One day mom bought four boxes of Edy’s coconut ice bars that come six to a pack. She ate three boxes for a total of eighteen ice bars in about four hours … My mother would never eat that way before vascular dementia … Oh, my mom weighs 145 pounds and she never gains weight.”
CJC: “My mom, age eighty-five, cannot get enough sweets. I bake dozens and dozens of cookies every other day and she eats them as fast as I bring them. At first, I thought she just liked my baking … Now I can’t keep up with her. She will sit by the kitchen table for hours on end, eating cinnamon rolls, donuts, cookies, cake … and everything has to have butter on it. I mean everything! She eats all this and I still can’t get an extra pound on her.”
DS: “My husband has vascular dementia and will eat two to three dozen cookies a day and one to two bowls of ice cream at night. He demands sugary cereal for breakfast and peanut butter and jelly sandwiches for snacks in addition to regular meals. He never gains a pound. It seems pointless to me, but he also takes Lipitor for his cholesterol. Can’t imagine why he has high cholesterol!”
GT: “Boy, does she [crave sugar], ice cream, cinnamon rolls, waffles with syrup, anything sweet! Maybe it’s the calories to compensate for the endless wandering and nervous rubbing and the chewing she does all the time.”
YH: “I have FTD [frontal temporal lobe dementia] and crave sweets 24/7! No matter how hard I try not to eat them, I have to find something, even if it is a can of cake frosting.”
TC: “My mom never ate sweets. She’s Italian and the sweetest thing she ever enjoyed was anise! About six or so years ago she started buying and hoarding candy bars. Now, she will eat as many as I let her. I understood it to be the taste buds going and sweets being the easiest thing to taste.”
And on and on! I was surprised at how many people responded in the affirmative to this question about craving sweets. The problem involving the use of glucose in the brain by people with Alzheimer’s disease will be discussed at length in Chapter 14.
There is a book called The 36-Hour Day (2001) by Nancy Mace and Peter Rabins. When a family member has Alzheimer’s disease, at some point life goes into slow motion. Things that most of us do without thinking can require an extreme amount of time for someone with Alzheimer’s, and the designated caregiver also begins to spend an exorbitant amount of time helping that person accomplish the smallest of tasks. You no longer have to worry about just dressing yourself, for example, but you have to guide the other person to find appropriate clothing and make sure each piece of clothing is put on successfully.
As hard as Steve tries to get his underwear on, even after carefully studying the clothing, more than half the time, items will end up backwards. Then he may decide that is not okay, take them off, and try again; or after several attempts with the same outcome, he will give up and decide that it is okay to just have them on backwards. He may or may not be in the mood to let me help him. If it is a situation in which it really doesn’t matter, then I can let it go. If we are going out of the house, I know that it will cause a problem when he has to use a public restroom, so I have to intervene and convince him to let me help.
After the underwear is in place, the next undertaking is to get his shirt on. Once again, the first attempt is usually unsuccessful; the shirt goes on backwards or an arm lands in the neck hole. As he pulls the shirt off, he turns it inside out; then I take it and turn it right side out; and he tries again, sometimes more than once, until he finally gets it on right. The same process happens with the pants, the socks, the shoes. I want to let him do as much for himself as possible, and yet it is agonizing to watch this process and not intervene, not try to speed it up somehow, particularly when there is a deadline to get out the door and be somewhere.
On several occasions I thought I would be very efficient and get Steve completely dressed and ready to go out the door before taking care of myself. I took a quick shower and exited the bathroom, only to discover that he had completely undressed himself in the interim, and the best laid plans had once again gone astray. It is very much like taking care of a young child, except that, over time, the child learns how to take care of him or herself, but the person with Alzheimer’s disease will become even less capable of doing so. The worst part is that Steve is fully aware that he was able to do all of this at one time and now he cannot. I can only try to imagine how humiliating and frustrating this must be for someone who was so competent in the past and now is so dependent. Another Lois Walsh poem perfectly sums up the caregiver’s quandary.
LIFE ON HOLD
Dum da da dee dum. Diddle diddle de dum. Thank you for your patience.
Life on hold.
Waiting.
There are 1,646 people ahead of you. Estimated wait time is four years.
Thank you for your patience and have a nice day.
As the disease evolves, a time comes when the caregiver has to keep a constant lookout for the person with Alzheimer’s and often has to think for them: about what they are trying to do and how to do it, what they want and how to get it. I try to get up a couple of hours early to have some time to myself and get some important, or not so important, things done before Steve wakes up. I do this because, from the moment he enters the kitchen, the gears shift and it becomes all about him and what he needs. He cannot simply pour himself a cup of coffee and get himself something to eat, no matter how simple the meal would be, much less find his medication and take the right pills. So this has now become my job.
Steve wants so much to help me, and yet, when he does, it takes considerably more time to get the job done. For example, he likes to help with the dishes, but gets confused about whether the dishes in the dishwasher are clean or dirty. He will decide that it is time to work on the dishes when I am not ready to get involved. Even with a sign on the counter above the dishwasher that says “Clean,” he will pick up dirty dishes from the sink and add them to the dishwasher instead of clearing out the clean dishes first.
Steve wants to take the garbage out, but needs my help to complete the task, since he can’t remember where the replacement bags are for the cans and how to get them back on the liners and the liners back into the kitchen garbage cans. Inevitably, this doesn’t happen when I would like it to happen. He decides he wants to do it and I must stop short with whatever I am working on to get involved in his project. If I let him try to carry this out on his own, I will witness his frustration with trying to figure out this task that should be so simple and yet is so complex for him. It becomes easier for me to “help” him, so that he can feel like he is doing something to “help” me.
In the spring of 2008, Steve and I were driving to Tampa for an appointment and he turned to me and asked, “Who sired Julie?” I asked what he meant, “Who was Julie’s father?” He said, “Yes.” I said, “Who do you think it was, the milkman? You are her father, Steve.” He told me that he had no recollection of Julie as an infant or of taking care of her, even though he was her primary caretaker when I was working. This was a startling revelation to me and the first hint of a time, possibly in the not-too-distant future, when he might not recognize Julie or her sister, and perhaps not even recognize me. Lois Walsh expresses this anguish so eloquently in this poem.
FAILURE
I am learning there comes a time when you can no longer
Reason, argue, teach, correct, or explain.
A very hard lesson when I have worn many hats of a very independent woman:
Wife, mother, nurse, artist, poet.
It is my nature to fix things, make things right, keep everything on even keel.
Impossible then and even more so now.
The journey started ten years ago, it’s just now getting difficult.
I will forgive myself for seeking perfection.
I am swimming against the tide, trying to keep my head above water
But drowning in pools of sadness.
Trying to keep normalcy but failing,
Still wanting to reason, argue, teach, correct, or explain.
Steve was on the wrestling team in high school and has always been very strong physically. In the summer of 2007, he remarked that he was no longer able to run, and by winter of 2008, his walking gait had become slow and deliberate, as he picked his feet up higher than normal. A nurse practitioner remarked at one of his evaluations that this gait was typical of many people with Alzheimer’s disease. It is a sign that the disease process is affecting the areas of the brain that control movement. As Steve “worked” around the yard, he often seemed to be in slow motion with a lack of energy, accomplishing very little. He spent a great deal of time trying to “organize” his collection of garden hoses and left a snaky mess covering the walkways around the garden, making it difficult to navigate for anyone and even more so for someone in his condition.
While many people like to sing, Steve enjoys whistling and actually can carry quite a tune. He likes to talk to the birds, often trying to mimic their calls. For many years, he had medleys of songs that he whistled while working. It made me happy to hear him whistling because I knew that he was feeling good.
As Alzheimer’s set in and worsened, his repertoire diminished to the point where he would often whistle the same eight notes over and over and over from the Johnny Cash song “Because you’re mine, I walk the line.” I thought I was going to go out of my mind listening to these same notes, now more like a nervous tic than a happy tune.
We recently rediscovered how much Steve loves music when I overheard him whistling along to a Barry Manilow song. Almost daily now, he spends time listening to one or more of his favorite artists or sound tracks, such as Fiddler on the Roof or South Pacific, and it is amazing how many of the tunes he can whistle along to. If he is in a bad mood, putting on the music will nearly always bring him around to a happier place.
Some things that happen when a person has Alzheimer’s disease are funny and seem inexplicable. For well over a year, Steve often walked around with just one shoe on, usually the left shoe. Sometimes it was just one sock and no shoes. There would often be a pile of all left shoes in the closet or by the door to the garage, with no right shoe in sight. I would point this out to him, but he didn’t care enough to correct the situation. When we shopped and he spotted the shoe department, he would ask to buy another pair or two of flip-flops and I would usually humor him. We would also buy four or five pairs of the same shoe style at the same time. I thought that, if we had enough of the same type of shoe, we would be able to find a match when we needed to, as when we were walking out the door to go somewhere, right? Wrong! This was not quite so funny when we had a deadline to get somewhere and we could not find a match in the house, even with so many pairs of shoes.
Where were all the right shoes? Apparently, when he was “organizing” out in his garage, he would take off the right shoe and sock and leave them there. So, periodically, when there were no more pairs left in the house, I would send him deep into his garage, and if he spotted a shoe, I would tell him to throw it out to me. We would find six or seven shoes, and then we were all set for a while.
There is a phenomenon in which people with more atrophy on one side of the brain than the other will begin to ignore the non-dominant side. Since Steve is left-handed, he ignored the right side. On his last MRI, he did have more severe atrophy in the hippocampus and the amygdala on one side of the brain compared to the other. The hippocampus is important for its role in the formation of long-term memories, one of the first areas affected by Alzheimer’s disease; the amygdala is involved in many brain functions, including emotion, learning, and memory. One physician told me about a lady who put lipstick on just one side of her mouth. Strange things happen with this disease!
These days, Steve keeps his pairs of shoes together most of the time and wears two shoes nearly all the time. However, we still aren’t perfect. Recently, he put on two different colors of socks and two different shoes. One could say it was my fault because there were two pairs of each to choose from where he was dressing. I find that if he sits on the edge of the bed and two different pairs of shoes are available, he will inevitably mix and not match. It helps to have only one pair of shoes available when he is dressing.
Steve used to fit the definition of Jack-of-all-trades, able to fix almost anything with little or no instruction. For many years, he did much of the work on our cars, and he could perform most of the repairs around the house. He even had the nerve to open the computer when it stopped functioning and was usually able to figure out what was wrong and get it working again, to my utter amazement.
Steve told me early in our marriage that this was his method for fixing things. This habit became a problem a few years ago when he could perfectly well take things apart, but would then become distracted, put them aside, and misplace one or more of the pieces. They would find their way into a pocket or some container of odds and ends, and were later deposited in a peculiar location, never to be found again.
We have gates leading out of our courtyard that have special locks. When Steve had trouble getting the key into the lock, he decided, instead of spraying a lubricant into it, to remove the entire lock from the gate. He put the pieces into a small container, which also contained parts from the tracks for the cover of our small exercise pool. The container mysteriously disappeared. Steve insisted that it was “stolen,” even after I suggested that, if someone was going to steal something, they would be more likely to go for something valuable. A common symptom of Alzheimer’s disease is to believe that misplaced items have been stolen. The person does not remember moving the items, and the idea that they were stolen somehow seems more logical to them. Even now, as of this writing, if something is missing, Steve will tell me that “they” are stealing us blind! But he cannot tell me exactly who “they” are.
On one of those long workdays in August 2007, Steve began to vacuum the bedroom carpet for me as I left for the hospital. I arrived home at about 8 P.M. after a very difficult day. It was raining, I was hungry, and my mind was focused on what to make for dinner. As I pulled into the garage, I noticed the purple parts of my Dyson vacuum cleaner distributed around the garage. I hate to use the word “love” in reference to a household appliance, but if it is possible to love an appliance, then I love my Dyson! I must admit that, with the perfect storm of fatigue, hunger, and the sight of my vacuum cleaner in that condition, I lost it.
I know that Steve can’t help doing these things. I have been told and have read that I need to maintain patience for this reason, but there are times when it is virtually impossible for me to be a saint, and this was one of them. His explanation for this tragedy was that the inside of the canister looked grimy and he decided to clean it. He said he would put it back together tomorrow, but fearing that pieces would be misplaced and knowing that he would not be able to figure it out, I began to reassemble the vacuum. It did not take long to realize that the canister itself was completely missing. It was not unusual for things to disappear to the yard or to Steve’s chaotic garage. It was raining and getting dark, so I spent the next hour (still very hungry) searching every conceivable location indoors and out. At last, the canister was found, enclosed in a tall metal cabinet out in his garage. Steve had no recollection of putting it there, much less could he explain why. Lois Walsh’s poem expresses the caregiver’s yearning for patience.
MY PRAYER
I feel I am losing both the battle and the war,
Trying to keep things normal but nothing’s normal anymore.
Trying to live in the present with a willing heart but
Feeling myself slowly falling apart.
Crying and screaming then walking away.
Taking deep breaths, stopping to pray.
Please God give me strength to continue on this day.
In the end, the pieces all came together, and, voila, the vacuum was back in service. It was many months before I could look back at that day and smile, not only because of what happened to the vacuum, but also because of the way that I lost it with Steve. That is definitely not the only time I’ve lost it, but the intensity was such that it sticks in my mind. Part of this phenomenon of losing it for me has to do with thoughts about how I have lost the man who was my partner for so many years, who could do so much, so well, replaced by someone who takes things apart when I am not looking. I become obsessed with the additional cost of my time, when my time is already so stretched to the max. I expect to come home, make dinner for us, eat, relax together for a short time, then go to sleep, and instead, I find myself on a hunting expedition in the rain, dinner delayed, and no time to relax afterward because it is now time to go to bed and sleep is more important.
But by that point, sleep was no longer simple. I began having difficulty getting to sleep and staying asleep, often waking at 5 A.M., thinking about how our lives had changed, how bleak the future appeared, going over and over all of this in my mind, reviewing the past, looking for a reason. Was it something Steve had done or not done? Was it something I had done wrong, something I could have changed if I had only recognized the illness soon enough?
Steve has always loved gardening, and he designed and planted some very beautiful, unique landscapes at several of the homes we lived in. He even installed sprinkler systems with special gizmos for the various types of plants. My favorite spot was at our home in Dunedin, where he planted red bromeliads around a very old oak tree and the ring of plants slowly spread over the years we were there.
If he spotted bulbs sitting by someone’s garbage cans, he would ring the doorbell and ask if he could have them. When we visited amusement parks, he would pocket seeds that he found on the ground. He would plant these in plastic pots, make them grow, and use them in various gardens around the house. He kept the grass neatly trimmed and edged and the gardens nicely weeded and mulched.
As Alzheimer’s disease set in, Steve began to lose interest, and the grass grew too tall, the edging went by the wayside, and the gardens became overgrown. I suggested that we get help with this, but he insisted he could handle it. So we began to work together on the yard, and I found that I actually enjoy gardening, even if my hands do get dirty.
By the spring of 2007, Steve was no longer able to design a layout, so that became my job, and we shopped together at the garden store to pick out plants that we both thought would work well together. I put the plants in pots in the spot they were to be planted and Steve dug the holes, put the plants in, and added mulch around them. It wasn’t the neatest garden, but we both felt good about it. On the other hand, Steve wanted to cut and trim the grass. He decided to get his John Deere tractor up and running, and instead, pieces, such as the air filter and gaskets, went missing and the grass kept growing. We hired a lawn service “temporarily.” Steve was very critical of their work and was certain he could do it better; however, the tractor sat in the garage unused.
In 2008, we quickly learned that Steve needed significantly more supervision with planting the courtyard. This time, I had to tell him exactly where to dig the hole and stay with him to complete the digging of even one hole, since he would become distracted midway through and wander away. I would suggest that he make the hole deeper or wider, and instead he would begin to fill the hole in. He couldn’t seem to see the plant right in front of him to put into the hole, and couldn’t see the gaps around the plant when he tried to fill in around it. We were both frustrated and very sad, since this brought home the magnitude of the deterioration that had taken place in the intervening year. Needless to say, it was my turn to pick up the shovel.
After the dietary intervention, Steve wanted to cut the grass again himself. We stopped by a nearby mower shop, and I asked if they made house calls to fix tractors. They took the tractor to their shop, replaced the missing parts, and found that Steve had put the gasoline in the oil tank and the oil in the gasoline tank. Once it was home, Steve proudly got on the tractor and cut the yard on his own for the first time in several years. The grass may be at several levels and the trimming could be neater, but he is doing something that he enjoys and can do to contribute to the upkeep of the house. And he has stopped tinkering with the parts.
By the winter of 2008, Steve had been living with depression for at least eight years. His early memory problems were attributed to depression, but antidepressants didn’t take away the problems that led to depression, nor did his memory improve. In fact, the problems continued to worsen, and he also had to endure the side effects related to the medication. He was first placed on Zoloft and then Wellbutrin, but in the summer of 2005, when we were building our new home and in the months following, the depression clearly worsened. By this time, Steve was no longer capable of doing anything but the simplest accounting work. He spent an exorbitant amount of time in his garage, accomplishing nothing. He was sad most of the time.
When he didn’t know I was watching, he would often talk to himself and it did not sound like happy talk. When we sat down to discuss this, he told me there was a voice in his head that was constantly berating him, much like his father had berated him as a child. He said this voice was his own voice, but sometimes felt like his father’s voice. This voice was telling him that his life was pointless and we would all be better off if he did himself in. He finally admitted that he was so obsessed that he had thoughts of suicide at least sixty times a day. As soon as possible, I got him to his psychiatrist, who added a second antidepressant. With the new medication and regular counseling, his mood improved, and he said “the voice” was gone, but he was still far from happy.
By the winter of 2008, his depression was growing worse again. Steve told me that he felt like he was dying and had no future, so “why bother.” He promised that he was not going to try to kill himself, but he was sad much of the time, and became quiet and bland, rarely laughing or even smiling. We had a Christmas party at our home for the nurses I work with, and some of them commented later that he seemed lost and aloof. He avoided conversation and even avoided being present in the room where the party was going on.