Sabbatical

Note from the author: As you may have noticed, I am taking a break from writing this true story. It's a mental health break, really, as I have reached a part in this tale that is very difficult for me to think about, much less write about. I am writing this near the end of December 2009, and hope that in the next few months I will be able to continue.

Please check back occasionally. Thank you,

Bronwyn

Chapter Fourteen

"You're perfectly safe..."

I walk a short distance down the hall to the bank of elevators. The door of car one opens. I step in and punch the button for the fifth floor. Leaning back against the handrail, I watch the floor numbers light up as we pass each floor. I straighten up, expecting the elevator to slow as we pass floor four. It doesn’t. It doesn’t even stop. I pass floor five and then the car lurches to a stop. The door doesn’t open.

I am puzzled, but not alarmed.

I push the button marked for opening the doors. Nothing. I refuse to believe what is happening. I check again for some way to open the doors. I place my fingers on the doors, trying to see if I can pry them open. Nothing.

I push buttons for other floors, trying to make the elevator move. Nothing.

I don’t have time for this, I complain silently to myself. This cannot be happening! No one knows where I am! Rick is due back any minute. The nursing station on Lee’s floor doesn’t know where I am. Cell phone use in the hospital is discouraged, so I don’t have mine with me.

I push the red alarm button. Nothing. I push it again and in my indignation I hold it down a long time. Suddenly I hear a woman’s voice asking if I am okay.

“NO!” I respond. “This elevator is struck and I can’t get out.” She tells me she will report it, and leaves.

I wait. And wait. It seems like a long time, but probably was only minutes. I rail against machinery over which I have no power, but which has absolute power over me. I think about all the stress I have been under since May, how my world as I knew it has changed so completely.

I am working myself into a state of extreme anxiety, and I force myself to calm down by controlling my breathing and taking deep breaths. I talk to myself quite severely, telling myself to calm down. I feel tears sting my eyes. This is all too much.

I read the emergency instructions on the call box: “Push button to call.” I push the button and hear phone call tones. A woman’ voice answers. I push the button and talk to her. When I release the button, I hear the phone ring signals again.

This happens again and again, and I become even more frustrated with the inability to make a connection. After many failed attempts, it dawns on me that maybe I don’t have to hold the button down to talk.

That works and finally I am able to communicate with the hospital operator. I explain and she says she will notify maintenance.

I wait some more. I think about being tomorrow’s headlines: “Woman Killed in Hospital Elevator Crash”. The tears sting again. I don’t want to be tomorrow’s headlines. Who will take care of Lee?

I think about the earthquake in 1964, about the three teen-age boys I interviewed afterwards who had bounced into the J.C. Penney’s elevator. Suddenly the lights went out, the elevator lurched, and they were trapped for some time. How they thought they had caused it all. I have never been comfortable in elevators. Worse, since the earthquake, I have never liked being off the ground floor of any building.

I do some more deep-breathing exercises. I can feel pressure building in my neck. My head starts to pound. My left arm aches, as does the center of my chest.

I call the operator again. She connects me to maintenance.

“You’re perfectly safe,” the maintenance man assures me.

“Safe?” I cry. “I’m in a machine that’s already failed once!”

That’s what machines do--they fail. I learn that there is no one on-site who can get me out of this elevator. They have to call the Otis company and have a serviceman come over. When I ask how long that will take, he responds, “About twenty minutes."

Again he assures me I am safe and I tell him I don’t feel safe at all.

Twenty minutes. Right. It’s Christmas Eve afternoon and there’s a blizzard building outside. Yeah, right, twenty minutes. I am furious.

I am also working myself into another state. I could have a heart attack right here in this elevator surrounded by a hospital and nobody could get to me to save me. More deep breathing. More stern lectures. I call the operator again. I apologize for it. She assures me it’s fine and says I can call to talk anytime I want. I feel silly, like a child, and I tell her I’m okay, but ask if she will call the fifth floor nurse’s station and let them know that I am being held captive by an elevator. It's a pitiful stab at humor in a situation I don't find humorous.

By this time I am sure the nurses are peeved with me. Lee’s discharge papers were written some time ago, and they probably think I am out lollygagging around town, Christmas shopping or something equally as inappropriate.

No, I’m stuck in an elevator between the sixth and seventh floors. I wait. I sit. I stand. I think about how silly it would be to try to save myself in a falling elevator by jumping into the air at the last instant, thus avoiding the sudden crashing stop at the bottom. Ridiculous, I think. How would I even know when that last instant is?

More deep-breathing. More stinging tears. Someday, I think, I will be able to tell this story and find it humorous. After enough time has gone by. I hope.

Suddenly the car shakes and drops an inch. I grab on to the handrails. Headlines, here I come! What a way to get my name in the paper.

“What’s going on,” I blurt out loud.

“It’s okay, ma’am,” comes a male voice from on top of the car. “I’m just lowering the elevator so I can get you out.”

Why didn’t he warn me, tell me he was there?

Inch by lurching inch the car drops. The serviceman tells me he is going to open the doors, but to be careful when I get out because the car might not be level with the floor.

Slowly the doors inch apart and I can see the car is about six inches above floor level. I stare at the widening opening, and when I think it’s wide enough to get through I....freeze. Should I creep out slowly? Should I make a flying leap? I calm myself, try to think myself as light as possible, and walk out, step down onto solid floor. Into the arms of....nobody!

There is no one there. No Kleenex. No hugs. No apologies for the aggravation. No expressions of concern.

Nothing.

And that is the part I find the most infuriating. Not the imprecise call box instructions. Not the failure to have an on site release plan. But having no one to meet me as I escape from the jaws of certain death? I was stunned---and far from being in control of myself. I am on an unfamiliar floor, and walk around trying to find someone who can tell me where the stairs are.

I notice a clock and see that it is a few minutes after two. I have been in that elevator for an hour and twenty minutes.

***

Chapter Thirteen

The Threshold of Pain


December 2002

The neurological reaction that followed Lee’s hernia surgery in May made me postpone any thoughts of an open house party. Now, in December, I am thinking that a gathering during the Christmas holidays would be appropriate. Many of our friends have not yet seen our new home.

Things have been going well. The trip to the Memory and Aging Clinic at UCSF brought some comfort, if only in knowing that Lee has been seen by the best. The preliminary diagnosis of FTD was a relief at first, until our Anchorage neurologist told us it couldn't be treated. Now we are waiting for our return trip in February, when Lee will begin his participation in a five year study.

His brother Jake has decided to move to another state and is staying temporarily in the trailer house with Rick. I ask Jake to keep Lee company on Dec. 19, or at least check on him frequently, as I have decided to go to Anchorage for some Christmas shopping and get supplies for the open house. I come home loaded with stuff for a party.

Jake and Rick come for dinner that evening. Lee has been complaining for a few days about discomfort in his lower abdomen, and is convinced he has ripped his hernia repair. I am skeptical, but he is sure. When I ask if he wants to see a doctor, he says "no." He will lie down for a while and the pain seems to disappear. Because of this and the fact that his complaints are so sporadic, I don't take it too seriously. He is, after all, 73 years old, and old bodies sometimes just hurt. Also his conversational skills have eroded, and explaining himself is difficult. If I push, ask too many questions, he seems to shut down.

After dinner I am in the loft and I hear Lee and Jake talking. Lee is lying on the couch, and I hear him tell Jake quite emphatically, "BECAUSE IT HURTS!" There is something in his voice that spurs me into action. I race downstairs and question Lee without mercy. I don't let the hallucinations or the dementia interfere. I force him to answer questions.

I take Lee's temperature and it is over 100 degrees. His cognition is beginning to spiral out of control , and I hurriedly gather the stuff we need for a trip to the hospital in Anchorage. I let the ER know we are on the way. Rick follows in his vehicle. Lee fidgets with the dashboard controls, once opening his door while we are descending a mountain pass, and another time reaching over to move the gear shift lever. The hallucinations come more frequently, and I am surprised when Lee tells me to turn right at the next intersection. It is the correct direction to go, but I am stunned that he is lucid enough to recognize that.

In the emergency room, after many tests including a spinal tap, it is determined that Lee has appendicitis. The surgeon is called. Of course, it is late night by this time--emergencies never happen during normal daylight hours. Lee's fever is at 103 degrees and he is shaking violently. He is seeing cats in the ER. He is given drugs to calm him, and control the shaking. He is taken to pre-op.

Rick and I see the surgeon arrive, and we think surgery is imminent. An hour later we see a couple women arrive, and later we find out they were part of the surgical team. We are told where we can wait--there are a few chairs in a hallway outside the operating rooms.

We wait. And wait. Occasionally we get so cold that we walk up and down the long corridor, trying to warm up. It isn't our imagination--it IS colder in that section of the corridor where the chairs are! We wait for hours. Finally the surgeon comes out and tells us that Lee's appendix had burst some time ago, and it was necrotic­--green and black. He is amazed that Lee was able to bear the pain without complaining more vociferously.

There is a lesson in that for me, and I tuck it away for future reference.

At five a.m., we are allowed into post-op to see Lee. He is still asleep, resting comfortably. This time I have two rooms on the top floor of the hospital, in the Alaska house. Rick and I head up there for sleep. I am still cold, a cold that has penetrated beyond my bones and into my soul. I know what is coming and I fear it. Tomorrow my husband will not be in his right mind, and I dread how bad it will get this time, how much damage it will do to his already impaired brain.

Usually I sleep in only an over-sized tee shirt, but now I am wearing sweat pants, sweat shirt, and socks. I have my head under the covers, hoping that my exhalations will help warm my body. For once I anxiously await the hot flash that will warm me. It never comes. It takes me a long, long time to get to sleep.


***

Later that morning I find the room where they have taken Lee and am surprised to see that he is alert and lucid. There is a "sitter" with him, but Lee seems to be okay. That doesn't last long, and he again descends into a post-surgical reaction. He is much less agitated this time, and willingly remains in bed, but is in no condition to go home.

A couple days later the surgeon comes by again to examine Lee, who is sitting beside the bed. He greets us and then says, rather cordially, to Lee, "Jump up on the bed here and let's take a look at you." And Lee does exactly that--a quick step and he's standing in the middle of the bed.

Chagrin crosses the surgeon's face as he looks at me and says, "He took me literally!" He examines Lee and says everything is fine.

Lee's reaction this time is relatively minor compared to the first one, but we maintain a twenty-four hour vigil with him, trying to assure him that he is okay, and to keep him in contact with familiar faces. The CNAs who sit with him can go off to other chores while we are there, and we let them know when we will be leaving.

From the window of his room Rick can see his dad’s hospital room window. If a light goes on, he goes down there to see what’s happening. Usually, it’s because Lee has gotten up and started wandering. Other nights Rick stays with Lee. Rick snores loudly and is afraid to let himself fall asleep for fear of disturbing Lee. Rick is exhausted by morning when I arrive. We are expecting that Lee will be discharged on Christmas Eve day if all goes well.

Lee's cognitive state on the 23rd is not good at all, and I doubt he will be going home tomorrow, so I decide to make an overnight trip home, as we both need clean clothes. Before leaving the next morning for the hospital, I stop and pick up Rick's paycheck, almost getting the car stuck in the deep snow that has fallen. I arrive at the hospital late morning, and Rick leaves to cash his paycheck so he will have cash to buy gifts for his family, as he plans to go home that day.

Lee is lucid, and I am pleasantly surprised. He had a good night's sleep, and like always it has
improved his cognitive state.

The surgeon arrives and writes the release orders for Lee. Outside it is snowing and the wind is starting to blow. I am looking forward to getting out of there and down the highway before dark in this snowstorm. We have just passed the shortest day in the year, and dark comes around four p.m.. I go upstairs to my room and get my stuff together. I cannot check out until Rick gets back because I have to turn in his key at the same time. I would prefer to have all the paperwork done before I take Lee from his room.

Back in his room, Lee is asleep. Good, I think, that will make him all the better for the trip home. By this time it is just after noon, and I decide to go down to the cafeteria on the bottom floor. I haven’t eaten all day. I don’t recall what I ate, but I do recall glancing at the clock as I pick up my tray and head out of the cafeteria: it is twenty minutes to one.

***

I'm back..

I'm back, just not organized yet. Still working on the next few chapters. Lots of things to consider in them, and the answers are hiding from me. Should have something to post within the week. Thanks for checking in here.

Bronwyn

Intermission

Time for a mental health break. The next few chapters are in draft form and not yet ready for posting here. They describe a very difficult time in this journey. I'll try to work on them during the next couple weeks, but I will be away from home at the same time.

In the meantime, I notice HBO is planning a three part program on Alzheimer's. It begins Sunday May 10. I understand it will include information about the latest research and advances in treatment, and I suggest you watch it.

I'll be back towards the latter part of the month.

Thank you for being with me so far.

Bronwyn Swift

Chapter Twelve

Breaking Bubbles

Oct., 2002


After consultations with a half brother, Matt, in California, we began making arrangements for Lee to be seen at the Memory and Aging Clinic at the University of California, San Francisco. We obtained an appointment for October.

The rest of the summer passed uneventfully. Lee had definitely lost a step , though. The doctors had been right--he came back, but not all the way. I was able to leave him alone, but had to check on him frequently. I took over filling his medication boxes, but he takes the pills himself.

Lee had been able to fix just about anything, and now I had to argue with him to get him to allow me to call someone to repair things. As time went on, he became less and less opposed to this.

We traveled to San Francisco for the appointment at UCSF. Lee was examined and took several neurological tests. The testing was done in private, while the rest of us waited. There were five of us--Lee and myself, Matt and his wife Bonnie and a half sister Doris, who was a retired Registered Nurse. Late in the afternoon we had a family conference with the neurologist from UCSF and others. Matt and Doris were able to provide a lot of information about the extended family, and all agreed that they knew of no one who had had dementia. The sole exception was the maternal grandfather, who at the age of 93 had wandered outdoors and died of exposure. He had not seemed quite lucid in his last years.

The half-sister, a retired RN, started asking questions in relationship to her own problems. We tried to steer the conversation back to Lee, but she persisted. We all had been noticing some unusual behavior on her part, and this was a continuation of those things. She seemed to have been losing all her social graces.

Dr. G. told us that Lee had FTD (frontotemporal dementia). This was a preliminary diagnosis, he said, and it was impossible to tell for sure at this point, as there were some anomalies. They made arrangements for Lee to have a two-hour "research quality" MRI of his brain at the Veterans' Hospital the next afternoon.

Whew, I thought. At least it isn’t Alzheimer’s. In retrospect, I can’t believe I was so dumb. My brain seemed to freeze up around doctors, and I was totally unable to explore further questioning. I think I was still shell-shocked at this sudden turn-around in our lives.

We saw Dr. Saunders not too long after returning to Alaska. When I related the FTD diagnosis, she said, “Well, that’s too bad. FTD can’t be treated. Alzheimer’s can.”

So much for my little bubble of optimism.

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.

***