Sabbatical Redux

It's been a year since I was here. While I have continued to heal and life is good, I still feel blocked when I consider continuing this story. I'll think about this for a few days, and see what happens.

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.