Chapter Eleven

To Drug or not to Drug

July 2, 2002

Dear Dr. Saunders,

This note is to let you know how Lee is doing on the Zyprexa and Klonapin, and to ask if you would like to change anything.

After his release from the hospital in mid May, he was instructed to take 2.5mg twice daily of Zyprexa and .5 mg of Klonapin. We adhered to this regimen until June 6 when you recommended that, because of a rash he had, we suspend these until you saw him on June 10. During this prior period of time, he was rational but I thought he was very subdued and “drugged.” During the four days these drugs were withheld, he became much more alert and animated, as you noticed when you interviewed him on June 10. I noted that he had been sleeping quite well, but during the suspended time, he had not been sleeping well. “Twitchy,” as I call it.

You recommended that he go back on the two drugs at the same dosage, but one at a time. We chose the Zyprexa first, and I noticed that he again became “drugged” and continued to not sleep well. We then stopped the Zyprexa and restarted the Klonapin at .5mg in the evening. This was so we would know what to blame if the rashes started again. He went back to sleeping well again and became more alert.

About ten days ago we started the Zyprexa again, but only 2.5mg in the evening. He has again become somewhat subdued and almost “drug stupid” on occasion when he has taken the medication in the afternoon instead of the evening. I should elaborate by explaining that he is functioning well and is not a zombie, but there is a noticeable difference when he is taking Zyprexa.

My concerns are: that he might be over-medicated and that this is causing his sluggishness, but that stopping the Zyprexa may eliminate long-term benefits of this drug; and that is he continues on the Zyprexa, his drugged state may adversely affect his evaluation in October at UCSF Memory and Aging Clinic.

Do you have any recommendations or shall we continue as we are?

Thanks,

Bronwyn Swift

Message rec’d July 23, 2002

Dr. Saunders called and recommended that Lee stop taking Zyprexa. Resume if he becomes agitated or irritable.

Chapter Ten

"…better than I feared…”

Neurologist's Report, June 10, 2002

From the records of Janet Saunders, MD:

S: Mr. Swift has actually improved remarkably since he was in the hospital in early May. He had a delirium after he had surgery for his inguinal hernia. He did clear to some extent in the hospital but was still having some problems with visual hallucinations and confusion prior to discharge. However, he had cleared enough that his wife wanted to take him home rather than placing him in an assisted living facility. Fortunately this has gone much better than I feared it might. He is actually doing extremely well. The only problem is that he did drive into Anchorage one time. His wife did not even realize that he had left until he called her from Anchorage to ask her what it was that she had wanted to get in Anchorage.

O: The patient is neatly and appropriately dressed and groomed. He is friendly and cooperative, and I think behavior is quite appropriate. His speech is less productive than it has been in the past but it is goal directed and coherent. Today there is no evidence of delusions, hallucinations, or illusions. ...... He does still have problems with his short- and long-term memory.

P: The patient had some problems with his Zyprexa and clonazepam after discharge, but his wife feels that the blisters he had were not related to the medications. We will therefore put him back on his clonazepam and Exelon has been increased ..."

***

Chapter Nine

Winning and Losing

June 2002

A follow-up appointment with Dr. Saunders goes quite well. Lee is doing so well, and she is so impressed, that she leaves the exam room and asks her ANP Ann to come and observe him. Ann’s face lights up with surprise and relief when Lee speaks to her.

Dr. Saunders tells me that she had been quite worried about me taking Lee home from the hospital, rather than placing him in an assisted living home. I do not confide to her that I felt steamrollered by those events last month, that I was unprepared to make decisions so quickly. Suddenly he was being discharged from the hospital, and I hadn't had a chance to think.

Dr. Saunders recommends that Lee not drive any more. He doesn't like this, naturally, but he accepts her recommendation.

As time passes, he begins to believe she has taken his driver’s license, and I say nothing to correct this delusion. I will not have to be the bad guy who made him stop driving. I had been expecting a monumental battle. He has always been a proud, competitive, "can do" man, and his voluntary surrender of his driving privileges speaks volumes to me about his own awareness of his failing abilities.

He drives our vehicles on our own property and rarely goes out on the highway, except to get from one driveway to the next. I encourage him to go around the back way, and down the airstrip he had built, rather than pull out on the highway. Occasionally, he chooses to drive his four wheel ATV. As the summer progresses, I notice he is having more and more trouble shifting the machine. Putting it into reverse involves squeezing the brake handle, pushing a button, and using the left foot to push down a shift lever. This is too complicated, and he frequently calls me for assistance.

At other times, he turns the machine off without putting it in neutral. It will not start again unless it is in neutral, and this confuses him. I get on the ATV and rock it until I can shift into neutral, then I start it for him.

By this time Lee is taking Zyprexa (an anti-schizophrenic) and Klonopin (an anti-seizure medication to help with muscle spasms.) His left arm occasionally jerks quite violently. He continues on the Exelon, but the dosage has been increased.

***

Chapter Eight

The Long Way Back

We assemble in a small meeting room, Lee’s three grown kids, Rick’s wife, the surgeon, the hospital’s care coordinator, and an advanced nurse practitioner who works with the neurologist.

The surgeon gives his presentation and startles everyone in the room by stating that he had not been aware that Lee had dementia. The ANP and I look at him with our mouths open. I wonder if he ever read his patient in-take sheet, where I had written “Exelon” on the line for medications that Lee was taking.

Everyone says that Lee will come back but not all the way.

Rick is adamant that he does not want his dad in a home. He begs me not to do it, saying that he will come to our town and help me take care of him. He says his wife is fully behind him and that they will move near us if necessary. Meredith also hopes against a home. Debbie says she will back me on whatever I decide. We are told about a home in Seward and decide to check it out on Sunday.

The four of us visit the home on Sunday. It seems like a nice place, but I keep thinking that Lee is going to come around and will hate me for sticking him in a home. The monthly charge is $2700, an amount we could handle if absolutely necessary, though it will mean a drastic change for me. Debbie and I stay in my home that night while Rick and Meredith go back to the hospital. In looking through the Medicare handbook, as well as our supplemental insurance papers, I learn that assisted living home care is not covered by either.

The next morning we call Rick before we leave for Anchorage, and he says his dad is fine. Lee had slept all night and woke up completely lucid.

I drive into Anchorage, afraid to get my hopes up, but Lee is indeed lucid and rational. Rick says he had been with his dad during the night, and had told him the hospital would never release him unless he starting sleeping at night. After that, Lee stayed in his bed and slept though the night. Rick has been a godsend during this past week. He has shown compassion and patience I never knew he had.

"What happened?" Lee asks me.

“A reaction to drugs,” I lie again.

He is discharged later that day and I take him home. He has been hospitalized for eight days for this reaction. Debbie and Meredith return to Arizona, and Rick follows me home to help with his dad.

We all feel like we’ve dodged a bullet. That ton of concrete I’ve been carrying around on my shoulders all week begins to dissipate.

***

We are all quite fragile emotionally after we get home. Rick continues to stay, and only goes home occasionally.

I sell our hot tub and gazebo to a local man, and recommend Rick when the buyer asks me who could move it for him. It is obvious to me by this time that I don’t need Rick’s help twenty-four hours a day, and he needs to earn some money.

The job turns into some more work, and by June Rick is taking on a huge job–that of building a seven thousand square foot home in our neighborhood.

Lee is doing well, and I feel that the danger has passed. Rick eats dinner with us almost every night he is here, and spends time with his dad.

***

Chapter Seven

Hell Week

May 2002

The days that follow are a blur. There are flashes of lucidity and our hopes rise, only to be followed by some truly bizarre behavior, and our hopes plummet. Our emotions are roller-coasters; our nerves are sand-papered into hypersensitivity.

Several friends come to visit and leave quite upset, sometimes in tears. Some bring photographs, hoping the familiar will help. Another brings aromatherapy scents. Others bring tales of their own relatives with Alzheimer's. All bring offers of help: "If there's anything I can do..."

Lee is rarely controllable. He knots his sheets and blankets, continually tries to get out of bed, and actively hallucinates. He picks constantly at his IV line until I suggest covering it with an elastic bandage, following the "out of sight, out of mind" theory of dealing with the problem. It works.

He sees some minor road construction going on outside his window, and he talks about what he sees happening, which rarely is close to being accurate. Several times he attempts to disassemble his hospital bed or a chair. One evening he is on his hands and knees on the hospital floor “working” on the chair. It takes three men to get him back into bed. Lee shows a flash of anger and demands they leave him alone.

Rick and the girls spend hours walking him up and down the hospital corridors, even taking him to the seventh floor and showing him the rooms where we stay at night, assuring him that we are close.

He is angry with me for taking his clothes and wallet. I have done both intentionally, knowing full well that he would leave the hospital if he had access to them.

"I couldn't even call a taxi to get out of here”, he accuses. I tell him I have taken his wallet for safekeeping as the hospital doesn't want to be liable for its loss. This mollifies him somewhat, but he brings up the subject again and again. It is a complaint that he will repeat often in the following years.

One day he insists on getting out of bed and going to the bathroom. I am the only one in the room with him at the time, and try to stop him as he is unaware of all the IV lines and monitors hooked up to him. He takes me by the upper arms and moves me aside as if I am a feather. He does not hurt me, but I am immediately aware of how vulnerable I am.

Doctors come and go. During one of their visits, when three of them happen to be there at the same time, I mention that Lee had been complaining of stomach problems prior to his surgery. Instantly they suggest an examination of the esophagus. I ask if this won't require more anesthesia, and they say it will. I am reluctant to agree to this procedure, wish we could postpone it, but say nothing. My head is whirling in an eddy of conflicting feelings.

The appointment is made. During one of Lee's less bizarre moments I try to explain that he is going to have a test to see why his stomach hurts. He is suspicious, anxious, worried. He wants to talk with his family physician. I call the doctor’s office and get him and Lee on the phone. The doctor assures Lee that the procedure should be done, and Lee trusts his advice. I am surprised that he can comprehend all this.

I feel crushed. I know nothing about hospital protocol, can’t figure out one person from another, and even worse, I begin to suspect that Lee will be like this forever. My shoulders are stooped from the burden and I cannot think straight. It is during this week, however, that I begin to forge a relationship with Dr. Saunders. She has remained quite professional, maintaining a careful distance between herself and the patient’s spouse, which I understand. One afternoon, however, I encounter her in the hallway and ask her a simple question. At this point she shows me her compassionate side, and speaks with me for several minutes, offering comfort and advice of a non-medical nature.

Finally Lee begins to sleep a few hours at a time and we notice that he is more lucid after sleeping. We suggest that his evening meds be given earlier so that the sedating ones will have a chance to be absorbed and effective by a normal bedtime hour. This request seems to cause a problem with the staff, as if they do not want us interfering in their care schedule.

The girls ask Dr. Saunders about this, and from things that are done and said, we think there may have been a mix-up in her orders. She is not happy, and tells us it won't happen again. She does not elaborate and we don't ask questions. I suspect we have been made privy to information that should not have been communicated to us. Once again I feel I am inadequate for this new life we are facing.

Thursday morning arrives and Lee’s procedure goes well. There is no problem with his esophagus or stomach. I am relieved, but still feel as if I should have voiced a strong objection to administering more drugs to him.

We are asked to attend a care coordination meeting that afternoon with the surgeon, the hospital’s care coordinator, a social worker, and an advanced nurse practitioner who works with the neurologist. All of them recommend that we find an assisted living home for Lee, assuring us that we never will be able to take care of him at home. We are stunned. We are not prepared to even think about this.

***

Chapter Six

Clinging to a Rope

May 2002

I've been thinking about gravity. Both kinds of gravity.

Being in a hospital room is a "grave" situation, no matter how cheerful and cordial and relaxed we try to be for the patient's sake. Injury and illness frighten us; they seem so beyond our control. We cannot see the bones knit themselves back together or the antibiotics attack the bad guys.

And then there is the other kind of "gravity"--the pull of the earth's forces that keeps us on this planet. This kind of gravity is increased a hundredfold in a hospital room.

It pulls my shoulders forward, rounds my spine, compresses my lungs. My breathing becomes shallow. It sucks the blood from my brain, diminishes the flow of oxygen, impedes my thought processes, makes rational and logical thinking impossible, leaves only confusion, anxiety and dread. There is a chunk of the heaviest lead where my heart should be.

My feet seem stuck to the floor with Velcro. I find it hard to move, impossible to find a place to sit comfortably. Gravity saps me of energy.

All around me there is confusion. The nursing staff’s schedules are made so no one nurse will have the same patient two days in a row. This obviously is for the benefit of the nurses. It certainly cannot be for the sake of the patient.

Even I am confused by the array of hospital employees who visit my husband's room. Everyone is uniformed, but in all colors of the rainbow. There is no consistent coloration according to position that I can discern. The registered nurses, the certified nurses assistants, and all the others dress according to their individual tastes, making it impossible for me to tell who is the RN, or the CNA or the oxygen saturation reader, or the physical therapist, or the menu taker, or the custodian.

They wear name tags, but old eyes cannot always read the small print on name tags, especially when those eyes are red and swollen from lack of sleep, crying and worry. If it is confusing to me, I cannot imagine how monumentally confusing it is to my husband with dementia.

I spend as much time in the hospital room with him as I can bear, trying to have a familiar face there that can ground him. The few flashes of lucidity bring questions: "What happened? What's going on?"

I lie to him: "It's okay. You're just having a reaction to the medication. You'll be okay. Try to get some sleep and it will get better." I have no idea if there is truth in what I just said. None of the hospital staff can explain to me in terms that I can understand what is going on in his brain. They don't seem to know either, or don't care to impart the information. Perhaps it would be irresponsible of them to do so.

These are lies meant well, but lies of commission nonetheless. My many lies of omission weigh more, and contribute to the pull of gravity.

After a couple days, a nurse we have never seen before comes into the room. She is friendly, out-going, comforting. She is my idea of a nurse–one who connects with the family and the patient. She tells me it is common for patients to have these kinds of reactions after surgery, especially patients with dementia. No one knows how long it will last. I grasp onto this explanation. I am grateful to her for giving me that much peace and hope, for giving me that rope to cling to.

***

Three of Lee's children are with me at the hospital: Meredith, Rick and Debbie. All are middle-aged, with families of their own. The two girls have come from Arizona; Rick from a town north of Anchorage. We make sure someone is with :Lee all the time, though we aren't sure he realizes who the girls are. I have rented a room on the top floor of the hospital, in a section called the Alaska House. For families from out of town who want to be near the patient, or for those needing long term treatment, it provides low-cost rooms and a common kitchen with refrigerator and microwave, and sitting area. It is a godsend.

We take turns using the room for naps and moments of escape. I notice the same pull of gravity extends to the top floor, though.

There is one single bed in the room, a small refrigerator, and a bathroom. The girls have squeezed a folding bed into the room, so that two can sleep. Once the girls arrive I choose to drive home at night. I do it for several reasons. I've already been there for several days, and need to escape the over-whelming sadness, to go home and recharge my internal batteries. Often it is necessary--I need clean clothes, or something else from home, or there is no room for me. Driving home is no small jaunt down the road.

I live almost a hundred miles south, along one of the state's most dangerous highways. Frequently it is the scene of fatal vehicle accidents, so much so that the first thirty-five miles, from Anchorage to the ski resort village of Girdwood, was deemed a "safety corridor" and speeding violations result in double fines. In the 1950s. my mother dubbed it the "Suicide Highway" and hated to travel it.

It has been rebuilt since then, but traffic is much heavier and it remains a dangerous stretch of road. With water on one side, rock wall from the cut-away mountains on the other, there is not much room for dodging accidents.

Most of that stretch of highway is unpopulated but for three small enclaves called Rainbow, Indian and Bird. The last place gasoline is available is Girdwood. After that, there are no services between Girdwood and my home, another fifty-five miles over two mountain passes.

Usually I enjoy this drive. Not today. I am too numb. There could have been a parade of wild animals up and down that highway and I wouldn't have cared. Today I am crushed with the weight of gravity.

***

I find little respite at home. I am far too preoccupied, too worried about where fate is taking us to relax. I get clean clothes and supplies ready to take back to the hospital the next morning. I wander about the house, feeling as if it's a stranger's house. I cannot relax. I don't know what to do. The house feels empty. It echoes. My stomach is too knotted to eat anything. I take a hot shower to relax, and go to bed.

In bed I stare at the ceiling, tossing, turning, throwing the covers off as menopausal hot flashes torment me. It's been ten years so far--how long is this supposed to go on? I am on hormone replacement therapy, but the really bad ones get through. I didn't react well to an increased dosage, so I must bear these . The very worst one of the day consistently hits when I snuggle in under the covers, ready to go to sleep. Within the minute I feel that familiar pang of anxiety and quickly I am drenched from head to toe. My hair is wet, the over-sized tee shirt in which I sleep is wet. The bed sheet is damp. I throw the covers off, exposing as much of my skin to the air as I can , hoping that evaporation will cool me. Sometimes I get out of bed and walk out onto the upstairs deck, letting the cool evening air cool me. Sometimes I have to take a shower and don a fresh tee shirt. Whatever remedy I use, I know I am awake for at least another hour.

Lee's troubles are enough to make me lose lots of sleep. Tears scald my face. My eyes become sore and puffy, my nose is congested, a headache ensues. I am miserable, both physically and emotionally.

The hot flashes contribute in a most negative way. I am awakened frequently during the night by hot flashes and nightmares.

Too soon it's time to go back to the hospital. I don't take time to eat, have a cup of tea, or look at the newspaper. I'm up and off. I have an hour and a half of driving ahead of me, lots of time to think about how everything has gone wrong, to wonder how on earth this is going to play out. Is he going to come back to a state of lucidity? How can I deal with this if he becomes violent as so many Alzheimer's sufferers do? How can we afford an assisted living home for him? A nursing home? What am I going to do? How do I get through this? What else is going to go wrong? How can he possibly have Alzheimer's? Not him! Not a man so capable!

Within minutes after reaching my husband's hospital room whatever relaxation and recharging I had gained are gone. I can feel the ton of concrete settling on my shoulders, and gravity once again stoops my body.

***

Chapter Five

“…clearly delusional…”

Neurologist’s report

May 6, 2002

From the records of Janet Saunders, MD

Hospital room examination

MENTAL STATUS EXAMINATION: The patient is somewhat inappropriately dressed in that he has taken off his pajama top and is walking around with just his bottoms on. Otherwise, he is appropriately groomed. He is not completely cooperative and is difficult to distract. He does not follow directions easily. He is quite agitated while I am trying to talk to him. He got up and started walking around the room and actually walked out of the room. He would continually mumble things to himself and when I would ask him questions, at times his answers would be completely irrelevant. When I could get him completely focused, he could recognize that he was probably in Anchorage but otherwise he ... immediately ...would tell me he was in his home town…

It is very difficult to get him to function and focus his attention. He is disoriented to being in the hospital. I could not get him to give responses to orientation questions as far as time was concerned. He is, however, able to repeat and name fairly well and actually could look at my watch and tell me the correct time. He is clearly delusional, thinking that he is at work and trying to get some work done. His affect is constricted and his mood is quite anxious and irritable. His attention and concentration are practically nil.

DISCUSSION: I suspect the patient's condition has deteriorated secondary to his pain medications and lack of sleep. Tonight, I am going to try to get him to sleep first using IV Haldol and if that doesn't work we can try IV benzodiazepines. It is always a little bit risky using benzodiazepines in patients with dementia as they can have a paradoxical effect with the sedation actually making the patient more agitated. I do think that if we can get the gentleman to have a good night's sleep for a couple of nights, he probably will begin to recover closer to his baseline......"

***

Chapter Four

“How about some light down here!”

2002

We moved into our new house in early February. Lee, who had never cared much about furnishings and decorating, chose the perfect sectional sofa and end tables for the living room. I was thrilled with my kitchen, and spent hours arranging and rearranging foodstuffs in my pantry cabinet.

We began having friends over for dinner. I was planning an open house for spring, when the overflow crowd could enjoy the front and back decks and we could barbecue.

Two months later, around the first of April, Lee had an appointment with a surgeon to schedule surgery for an inguinal hernia. I filled out all the paperwork, making sure I wrote “Exelon” under medications Lee was taking. After that appointment, we went to the hospital to visit Ron, our neighbor and best friend, who had suffered a reaction following minor day surgery. Less than hour later after we left his hospital room, he died, suddenly and unexpectedly. His death was devastating to us and to our whole community.

In addition to the grief we felt at losing Ron, we had a month to think about Lee’s upcoming surgery. He told me he wasn’t worried about it, but I could see a far away look in his eyes. Too many of his friends and construction buddies were dying. In one month we had gone to three funerals. Our enjoyment of the new house was severely dampened.

Lee went into the hospital for his hernia surgery on the first of May. I had a discussion with the anesthesiologist about what drugs he would use that were safe for a patient with dementia. I made sure everyone concerned knew of Lee’s dementia.

All went well, and the surgeon decided to repair the other side as well during the same procedure. Lee was released from the hospital the next day and we stayed in a hotel room for the night to give Lee another night to recover before making the hundred mile drive home. He slept late while I shopped for groceries, then we headed home.

He was very happy to be back in his own bed. The next day, Friday, he was well enough to go downstairs to the dining room, where he proceeded to refill his weekly pill minder. I was in charge of the pain medication, but he was taking care of his other meds. I put him to bed after his nine p.m. dose of Percoset, a pain medication, and awoke him at midnight for another. At three o’clock, I was awakened by the sound of him talking. He appeared to be asleep, but continued talking for some time while I lay in bed and wondered what was happening. I felt him get out of bed.

Suddenly he was yelling, “Hey! How about some light down here, guys!” I turned on a light and saw him holding onto the sides of a framed print, apparently thinking it was a ladder and he was in the hold of a ship in the dark. I got him back into bed where he slept fitfully for a few hours, occasionally yelling out and crying. I was at a loss to understand what was happening. I counted his Percoset and began to suspect that he may have taken an extra dose.

I kept him at home Saturday and most of Sunday and didn’t give him any more Percoset until twelve hours had passed, though he was having almost continuous hallucinations. He was seeing people and animals, and hearing voices that weren’t there. He got worse. After consulting with on-call doctors and the local EMTs, I took him to the emergency room in the city.

He was completely irrational and insisted on fiddling with everything on the dashboard in the car. At one point, while descending a winding hill in the mountains, he opened his car door as if to step out. I became more and more rattled. At the hospital they decided to admit him for the night. We were all still thinking it was an overdose of Percoset. I waited until they got him settled at two a.m., and went to a local motel.

On my return to the hospital the next morning, I found that Lee had become uncontrollable shortly after I had left. He had not slept all night and they had moved him to a room where he could be monitored constantly by video camera. A Certified Nurses Assistant (CAN), a “sitter”, with him, whose job it was to keep him in bed and try to keep him calm.

He seemed a lot calmer, and I hope the worst was past. Shortly afterwards, when we were alone, Lee told me that “they” had guns hidden all over and “they” had to clean dog (feces) off his bed. I phoned his brother Jake, who lived in our community, and told him about Lee’s condition. He suggested I call Lee’s son, who lived a hundred miles north of the hospital. After some conversation, I relunctantly agreed to allow Jake to call Rick, but asked that he be careful what he said so as not to alarm anyone. I was still thinking this was an overdose of Percoset.

A few hours later, Rick arrived at the hospital, and I filled him in on Lee’s condition. “Jake told me I better get down here,” Rick said, “because dad’ had lost his mind.” I was stunned. I seethed at Jake’s insensitive words, and apologized to Rick. We both decided to call Lee’s two daughters in another state. They both arrived the next day.

We had no idea what was happening to Lee. We had no idea of this was a reaction to medications, or a severe downturn in his mental condition. I rented a room on the top floor of the hospital, which made it easier to for us to stay with Lee day and night. He was still quite agitated and restless, and didn’t sleep Monday night either, which was his third night without sleep.

Dr. Saunders came in late Monday night and prescribed an anti-psychotic drug called Zyprexa, as well as a sleeping pill. Nothing helped. I had gone home for the night to get clean clothes, and also to let Rick and the girls use the room upstairs, and thus did not have the opportunity to confer with her. She was reluctant to reveal much information to the grown children, preferring to speak only to me.

At home, I was a basket case. I had no experience with hospitals, had no idea what the hierarchy was, didn’t know what questions to ask, and had absolutely clue how to advocate for a patient. My few short hours at home were spent lying awake, crying, completely confused. In retrospect, it was a good thing I was so uninformed. Had I known what was coming, I’m not sure what I would have done.

***

Chapter Three

“possible Alzheimer’s”


Initial neurologist’s report, Jan. 16, 2001

From the medical records of Dr. Janet Saunders:

History of Present Illness: The patient is a 71 year-old right-handed retired married white male who has noticed periods of confusion or problems with his memory. His wife feels that this has been progressive over 23 years. …He has always had difficulty remembering proper names but recently has had problems with any type of proper noun, to the point where he will use a lot of pronouns. This increases if he is under any type of stress or becomes flustered, especially in a situation where there are multiple people trying to talk to him or any type of distraction going on. His wife has even notices that he has difficulty with focusing on his driving and handling the car correctly if he becomes too distracted. This is partially due to the fact that he has some problems with hearing. She has noticed that he has had problems with math and basic other things, recently noted because they are building a house. … He really has no other neurological complaints except for loss of hearing and loss of smell….


Mental Status: The patient is neatly and appropriately dressed and groomed. He is friendly and cooperative, and his behavior is appropriate. I have a problem talking loud enough for him to hear me, and he responds to that quite appropriately. This did not seem to be a significant barrier to communication. He was able to name, repeat, read, and write without difficulty. He was able to follow a simple three-step command. There was no evidence of delusions, hallucinations, or illusions. His affect was full range and appropriate to context, and his mood is clearly anxious today.

He could name the governor, the lieutenant governor, and president elect but not the vice president elect. He could name Clinton with his vice president and Bush, but needed several clues to remember Reagan. He was able to spell “world” forwards and backwards. He could not perform two-step math and he could not do serial sevens which were given as 93-84-78-71-66. He was given three two part objects and after more than 15 minutes of intervening distraction he was able to remember “Arthur Clarke”, “722 Broadway”, and “yellow Cadillac” correctly.

(Nerve tests normal, deleted.)


Impression:

1. Possible early dementia of the Alzheimer’s type.
2. Status post polio.
3. Degenerative joint disease.

Discussion: The patient has had an MRI of his brain which is actually looking very nice for his age. He had multiple laboratory studies done which were all fine… Although the findings are somewhat subtle, I do think he may have very early problems with his memory in that I would expect for a person who was able to supervise complex mechanical machinery to have much less of a problem doing calculations. Overall I think his problems are extremely slight, but I think there is an advantage in starting treatment early on. I will advise him to start with vitamin E 1000 mg p.o.q.d. and will also suggest that we try a course of Exelon, warning him about nausea and vomiting. I will plan to see him back in about two months to see how he is doing with this.

Chapter Two

2001

The neurologist who examined my husband for his memory problems never gave us a diagnosis. I had to look at the examination invoice to see the word “dementia.”

I breathed a sigh of relief. At least it wasn’t the dreaded “A” word. “A” as in Alzheimer’s. Dementia, I thought. Must be senile dementia. Must be a normal part of aging. Don’t all elderly people start losing their memory? Little did I suspect then that in a bit more than a year, the “A” word would barge in with all the fury and frenzy of a charging rhinoceros to trample all our hopes and dreams of an enjoyable and comfortable retirement in our new home.

We had been noticing for several years that Lee was having problems. Little things, like being unable to figure out how to center a curtain rod he was installing, or forgetting the word while moving from the clue to the right space in the crossword puzzle. His short term memory was certainly bad, but he was able to tell stories from his past that made me think he was okay.

He noticed that he was having enough problems that he voluntarily gave up flying his Super Cub. “Too hard to hear the air controllers on the radio,” he said. He definitely had hearing problems, the result of being a mechanic all his life, and working with loud power tools and louder heavy equipment.

In the fall of 2000, we finally started building our dream home. We had lived on this four and a half acre parcel for twenty-three years, first in a small trailer house, and then in a one-room apartment over our garage. Lee had injured his back during the fall of 1999 and spent three months lying in bed. No sooner had he recovered from that than he fell on ice and injured his shoulder. That required surgery and a long recovery period. Not having a separate bedroom pointed out to us that we needed to do something else.

We hired a local carpenter. I was frustrated when Lee was unable to visualize the house from the floor plans, even when I took boxes from the pantry and stacked them up to resemble the design. I thought he was just humoring me, and not taking much interest.

We had worked with this carpenter before and because we wanted to assist, the carpenter gave us a “cut” list of lumber. I read the measurements to Lee. It immediately became apparent that Lee was unable to measure and mark a board and then cut it. He would repeat the measurement to me incorrectly. I took over the measuring and marking, and he cut the boards. I couldn’t figure out what was wrong, as this was so unlike him.

A visit to his family doctor resulted in an MRI of Lee’s brain to rule out organic problems, and then he was referred to Dr. Janet Saunders, a neurologist, in January of 2001. That was when we learned he had dementia. She never said the word, but described to us in physician’s terms what we had just told her were examples of his memory problems. Not being able to figure out how to get out of a parking lot in order to go a certain direction was a spatial orientation problem, as was losing track of where he was on the streets of the city.

Dr. Saunders prescribed Exelon to see if he could tolerate it. She said it could help with the memory problems. We were to check back before the prescription expired to see if he would continue on this regimen.

The two month trial period on the drug Exelon was almost up when I called Dr. Saunder’s office to see about an appointment. The receptionist said they had no openings for quite some time. When I explained the problem with the prescription running out, she said they would just renew it. We made an appointment for several months away, even though I was concerned about him starting a drug and not being monitored. Lee continued on that lowest possible dosage for over a year.

The house construction was occupying all our time and energy and we didn’t have much time to worry about Lee’s condition. Just normal aging, I continued to think.

He was making weekly hundred mile round trips to the city for supplies. One day, while hauling a trailer load of sheet rock, the transmission in the truck failed. Plans were made to haul the truck into the city to get it repaired, but Lee procrastinated. He had an appointment for the truck repair on Monday morning. By Thursday he had done nothing to get the truck moved. The fact that it was a one ton crew cab, four wheel drive automatic complicated things.
Finally I asked what the problem was.

“I can’t figure out if it will fit on the trailer,” he said. This was a man who had trucked heavy equipment, supplies and produce all over the west coast of the states, and he was telling me he couldn’t figure out if the truck would fit on his car hauler trailer. He told me he would measure the width of the truck and by the time he got fifty feet over to where the trailer was, he would have forgotten.

I suggested we both measure. He insisted I take a pen and paper to write down the measurements. I determined the truck would fit, as long as we put planks on the trailer so the wheel hubs would rise above the low railings on the trailer. The more talking I did to convince him that it would fit, the more concerned I became about his mental condition. It was pretty obvious that he was impaired, but he was able to get the truck loaded and take it to be repaired.

For the past couple years going to the city with him had been unpleasant. The highway department had pressed rumble strips along both sides of the highway, and in the middle in some places, to warn motorists when they were straying out of the proper lane. Lee could not stay off them. He would drift from edge to center and back to edge. Frequently he or other motorists would engage in various road rage demonstrations. I thought it was just a matter of time before he and another motorist came to blows.

(to be continued)