One Month

In exactly three hours it’ll be one month since Sheila passed away. I didn’t write anything between 9/12 and the evening of 9/15, but I have certainly relived those days, those hours countless times since.

If I had known that they were her last days and certainly her last hours I’m sure I would have done and said things differently. And I can’t help but agonize over how things went.

That Saturday, the 12th, started out poorly with the news that afternoon from Dr. B that Sheila’s options had run out. Unfortunately, from a mental preparation and action standpoint, we were left with the impression that Sheila still had time – maybe 2 months. So while I was distressed that the end was near, it was still some time away.

Being conditioned from years of watching death play out in movies and TV shows I had this idealized impression that we’d have a defining moment where we’d hold hands and have “the conversation”  that would neatly tie everything up. We’d look deeply into each other’s eyes and say everything that needed to be said with perfect clarity.

Unfortunately that didn’t happen. I just wish I had better, clearer conversational closure with her before she passed.

The day progressed with the tempo of visitors picking up as word spread through family and friends that things weren’t looking good and maybe they should come and see Sheila just in case.

We had an impromptu belated birthday “party” in Sheila’s room that evening. I had originally ordered a sheet cake of the same type we had for our wedding, but of course had to cancel that now that the party at the beach cottage was canceled. Jean managed however to bring a small slice for two. So we put a candle or two on the cake and simulated lighting them. We couldn’t actually light it because Sheila had an oxygen mask on.

Monica, Nancy, Steve, Joni, Kevin, Jean and I took a bunch of pictures (which you’ve seen perhaps in an early posting) and Sheila looked pretty good, very happy, under the circumstances.

The nights in the hospital, no matter when we stayed there, were always the worse for some reason. And this was no exception. She was in increasing pain, and sleep for both of us was fleeting, if at all.

By Sunday she had to be moved from the intermediate medical unit to the ICU, but there wasn’t a bed available, so they moved her to the post-op recovery area temporarily so she would have a dedicated nurse.

In hindsight, this is when I should have realized that the end was much closer than two months, or even two weeks. Once they put that “industrial strength” positive pressure oxygen mask on her (to force air into her lungs) it became very difficult to talk with her and it was becoming more difficult for her to breathe on her own, let alone talk, so she was reduced to writing on a clipboard.

I couldn’t kiss her as much as I wanted. We would occasionally lift the mask, with difficulty and awkwardness, but we wanted/needed to keep kissing. It got to the point however that she couldn’t keep the mask off but for a few seconds before her oxygen level would start to plummet, so I felt guilty about trying to kiss her anymore and stopped doing it. I should have at least kissed her more on the head, hands, arms…somewhere.

They finally moved her to the ICU after about 6 hours in the pre-op recovery area. They gave her a huge room, one that would easily fit two patients. And that encouraged lots of visitors. Too many at one point. It certainly got me jacked-up, and I know that at one point it was too much for Sheila. She was sweating from the effort to breathe even though the room was cool and she looked panicked or agitated. She wrote on the clipboard that she needed a break and asked that everyone leave us alone for awhile. But that aloneness only lasted about 10 minutes before people started drifting back in again. No one wanted to leave her. And I didn’t have the energy or will to enforce the ban.

Eventually people did leave and we started what was to be another long, problematic night. I was dead tired from not having slept much over the last few days, so I laid down on the cot around 11pm to try and sleep. But around midnight I was jolted awake by a commotion. I spun around and saw that Sheila was out of the bed, her mask was off and she was wildly pulling the cables and IV’s out of the machines. I rushed over to the bed to stop her and a nurse ran in to help. Sheila was panicked and out of control.

When we finally got her untangled and back in bed, it was obvious from her appearance and demeanor that she was worse. We didn’t know how long she had been off the oxygen, but she was clearly disoriented, fatigued, and confused. She had the most frightened look on her face and kept looking at me and then the nurse while she asked where she was, why she had all these cables and tubes, what were we doing to her, etc. I asked if she knew where she was and she didn’t. I asked if she knew what was wrong with her and she didn’t. She didn’t know the day or much of anything we asked her. I of course didn’t know what would be causing this condition and was now panicked that she had lost touch and maybe I wouldn’t get her back. But when I asked, almost in fear of what her response would be, if she knew who I was, she all of a sudden turned to me, smiled, and said, “yes, of course, you’re my husband, Ken.” You cannot imagine the happiness, the elation, I felt that even in her most confused and distressed state, the one thing she was immediately sure of was who I was to her. There was hope indeed…

So we got the positive pressure mask back on her and within two hours she was okay again, as far as her awareness of where she was and what was going on.

She dozed on and off for the next hour, so I laid down near her on the cot and rested until I saw that she was wide awake at 3am. I sat next to the bed while she worked on her Suduko and tried to encourage her to sleep. Her speech was starting to slur at this point, and I finally understood her when she said that she was afraid to go to sleep because she didn’t think she’d wake up.

So we sat silently for awhile when all of a sudden she said very clearly through the mask, “tell me a story.” I was clearly caught off guard with the request. She’d never asked me to do that before. It’s not like I told her bedtime stories or something. But I asked her what she wanted me to tell her about. She shrugged her shoulders and said, “anything.”

All I could see were her beautiful blue loving eyes peering over the top of this big plastic mask. We looked at each other for a few minutes it seemed. The only sound in the room was the oxygen machine working and the occasional beeping of the various monitors.

I sat on the side of the bed, held her left hand and told her to close her eyes. And then I started to talk about our ski and snowmobile trip to Wyoming. I asked if she remembered where we stayed – the Rusty Parrot – and then recounted her first solo snowmobile ride through near whiteout conditions, and the walking we did through the town, the side trip to Old Faithful, the meals we had, and the time we got to spend together at a photo studio looking at the pictures that now hang around the house.

I could see her smiling under the mask as she was visualizing what I was talking about. It was a great trip. One of many we took together. I was relieved that the memories were bringing her some respite from the pain and trauma she was going through.

The rest of the night was uneventful, and she finally got a couple more hours of sleep.

It seemed obvious that she only had a few days to live, so I requested a meeting with the San Diego Hospice people that Monday afternoon, the 14th. I thought that Sheila would want to spend her final days at home and not in the hospital. But as the hours passed it was clear to me when we came back to the room that Sheila was in no condition to travel by ambulance, and I didn’t want to subject her to the hourlong drive. So I said that we’d wait until Tuesday and re-evaluate her condition at that point. Obviously she didn’t make that milestone.

By Monday afternoon you could barely understand what she was saying, so when she needed to communicate it was by writing on the clipboard.

I’ve kept the clipboard and all the sheets of paper that she wrote on. It’s on the hearth in our bedroom. And of course I’ve looked at the papers a few times since. It has the handwritten list of items we ordered for our last meal together. She wrote, “I love you” when it got to the point that she couldn’t speak coherently anymore. And you can see how her handwriting started to get worse. She always had beautiful, elegant handwriting, so it was difficult to see that changing to an almost grade school quality.

As Monday evening wore on the pain increased and therefore the morphine levels increased. She lost consciousness sometime around 6pm I think and never came back fully.

Around 7pm or so we had to continuously suction her nose and mouth. Karen and Monica took turns relieving me from the effort, but I wanted to do as much for her as I could for as long as I could.

Around 9:30pm they had to move Sheila out of the ICU to make room for another patient, and they moved us to the 3rd floor. The suctioning continued down the hall and on the elevator.

At 10:15 Karen, Jean, Pam, and Monica left when Steve and Joni arrived. We were in a much smaller room and it was too crowded.

We had been suctioning for over three hours straight, and as far as I could tell it was going to be an all night thing. I wasn’t sure I would be able to stand all night, and I was joking with Sheila that she was doing this on purpose to really test my love for her, but I was determined to do it for as long as I was physically able. Even though she didn’t seem to be conscious I swear she could hear me because a couple of times I told her I loved her and asked if she loved me too and she raised her left eyebrow both times. What a woman. Devoted to the very end.

Joni left around 11 I think because she had to get up for work at 4:30. So Steve and I stayed with Sheila.

Things started to change suddenly by 11:40pm. The intervals between breaths increased, and I started to panic realizing that this was finally happening, and Sheila wasn’t going to prevail this time. I was running my hands over her, for whatever reason, maybe thinking that would somehow reverse the process. I didn’t want her to go. I was afraid to lose her. It couldn’t be happening. It wasn’t real.

By 11:57pm it seemed like 30 seconds passed between each breath. I called for Dr. Test to come in. He arrived a few minutes after midnight and Sheila was gone.

The nurse came in and put the bed down flat. Steve left the room and called Jean, Monica, Joni, and Karen. Karen didn’t want to come back and see Sheila like that, but the others were on the way.

I laid down next to Sheila by her left side. It felt odd because I normally slept to her right. But I wanted to immediately be close to her, so for the moment I didn’t care what side it was. I lifted her right arm up to lay over mine and cuddled as close to her as I could. I stayed in that position for about an hour, and then I changed sides. The others had arrived by then and quietly drifted in and out of the room. I was so relaxed being that close to Sheila and feeling her body that I actually dozed off. It felt wonderful to be close to her. For the longest time I hadn’t been able to lay on her and had to be careful about where I touched her because she hurt in many places. So it was  nice to be able to freely touch her without causing her any pain.

I would have probably stayed all night like that but I knew that she had to go, and the others had to go home as well. So I released Sheila to the staff around 2am and went home with Steve and Joni.

The house is still a shrine. Nothing has been touched. It doesn’t seem like a month has gone by. The pain and sadness of Sheila not being with me is very fresh. I’ve gone through her photo albums, and that’s about it. Of course I’ve had to deal with several lingering business sale issues, but other than that I’m a bit on autopilot.

I cooked tonight for the first time in a month. The food that others have given me – including a very nice casserole that my neighbor, Tammy, dropped off – has sustained me until now. I don’t have much of an appetite anyway, so it’s been pretty easy in that regard.

I wasn’t here for a few days due to flying back East to be with Ralph, an employee/friend who had a brain aneurysm the day before Sheila went into the hospital. He survived the surgery and is making daily progress, so hopefully he’ll be back in a few months.

I’m still carrying Sheila’s urn back and forth every night. And I kiss her when I get home, when I go to bed, when I wake up, and when I leave for work. I really like being able to do that, and she fits well in my arms when I carry her down the hall. I talk with her about my day, or whatever’s on TV. I ask for her help when I can’t find things or need to make a decision on stuff. I miss my best friend. My most desired companion.