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.

***