Intro: Well, it's that time I guess. I've been meaning to put this up for a long time, but have not been able to. Now I believe I can. If you or anyone you know are going through the grief immediately following the death of a loved one, this may be for you. My journal of the days immediately following Die's death covers many emotions and many situations. I have found that by seeing these emotions/situations in others, it has helped me come to grips with the naturalness of the process. Hopefully I can help others in the same way. Hopefully, what I wrote in those days will also have an impact on any professional caregivers reading this. Some of the situations (especially in the first couple of entries) infuriate me to this day, and no one should ever have to deal with those sorts of things.

March 17, 2005: Diane went into the hospital this morning. I dropped the kids off at school, and when I went home she called me into our room and said she had a new pain in her side, and the pain meds weren't working.

I told her it would be ok and I drove her over to the hospital. I didn't want to call an ambulance because for some reason I wanted to take her myself. I helped her into her wheelchair, and we went out to the car. On the way to the hospital we talked a little bit, and I comforted her the best I could. Die traded "I love you's" with my mom on the way out the door. That's unusual.

The hospital staff had her in and with her first meds within about 15 minutes. Not the best, but not bad. I was in and out of there all day, bringing the kids to visit after school, and hanging around generally.

The docs took some tests and x-rays, and we didn't get any results today, although when I was out, Dr. A., the palliative pain management doc, came by to see her and spoke to her for a few minutes. By the evening she wasn't in any pain.

They had her on oxygen, and earlier morphine I.V., which they later switched to I.V. Dilaudid, which she said was working much better, and made her mind a lot clearer. I came home to sleep I think about 10:30 p.m., leaving her asleep and breathing pretty normally. I figure this is just another hospital stay.

March 18 - 20, 2005: I got to the hospital at about 9:30 in the morning, bringing Die a Carnation Breakfast Anytime drink. (These drinks have as good or better nutrition than Ensure, Boost, or almost any of the others, and are less expensive. Diane had been practically living on them, grilled cheese and pasta for the last couple of months) Diane was visibly upset. She was scared, and I asked her what was wrong. She said the tests showed she had pneumonia, and that her cancer had spread rapidly. I told her I'd find out exactly what was going on, and went to talk to the doc.

The doc told me the tests were inconclusive, but that she was showing signs of pneumonia, and that her liver function was down by about 10%.

I returned to Diane and told her this. She was a bit upset, but seemed calmer. She said she had to go to the bathroom, and asked me to help her. She stood up and started to fall, so I helped her to a chair. Her breathing switched to gasping for air, and for the rest of the day she was having trouble breathing. I asked a PN to bring in a commode chair for her, and I helped her use that. Then a nurse and I helped her back into bed.

This particular nurse was having an attitude and was obviously 'bothered' by having to deal with this. I have little to no respect for that particular RN. (P.S. added March 2006: Note to RN's: It's a year later and I still have issues with this and the other items coming up below. You need to understand that every word you say, and every bit of body language you give off in this time will be remembered for as long as the survivor lives. Remember that.)

This activity had pretty much wiped Die out, and when she got back into bed she more or less collapsed. The nurse said she was going to catheterize her, so I explained to Diane what was going to happen. When it was done, she said she had to go to the bathroom, and I told her it was ok, she could go right where she was. Diane said it felt weird, but she was ok with it.

By this time Diane was very calm and told me she wanted to go home and see the kids.

I went out of the room and talked to the doc, who was standing with the social worker, the nurse and a member of the Palliative Care team, D.R.. The doc asked me if we had discussed a respirator if necessary, and I said no, but I would go right then and talk to her. He said if it came to that, a respirator would only make a few minutes of difference. By this time it was somewhere around 11:00 a.m.

I asked Diane if she wanted a respirator put in if she needed it, and she said yes. I asked her why, and she answered, "Because you want me to." I told her no, it had to be her decision and not to worry about what I thought. I should note that by this time Diane was showing serious signs of confusion due to oxygen deprivation. I said again, "Do you want a respirator?" and explained that it would be discomfort and pain going in, would mean she wouldn't be able to talk, and would only make a few minutes difference. She asked me what I wanted her to do, and I told her I couldn't make that decision for her. I said again, "Do you want a respirator?" and she said, "I don't know, I guess." I said, "Die, don't think of me, think of what you want. I don't have an opinion right now either way." And she said "No." I said, "No what? You don't want a respirator?" She said, "Yes." I just about broke down at this point, but I also knew she had expressed before that she didn't want to live on a machine. So I said, "Ok, no respirator then." She said, "What's a respirator?"

Diane had worked about 20 years in a hospital, and knew quite well what a respirator was. It was at this point I realized that she was quite far gone, so I asked her if she wanted anything. She said she wanted to go home, and she wanted to see the kids. I promised her I would get her home.

I went back out to the doc and others, and I said "She wants to go home." This bitchy nurse said (a bit condescendingly), "Sometimes they say they want to go home but what they mean is they want to die." I said (sarcastically), "No, she was quite clear that she wants to go home and die at home and see her kids. We've talked about this several times and I think I know what she wants."

D. said to me, "We'll make it happen."

I told the doc she wanted to see the kids, and asked how it looked. He said she had maybe a few minutes.

I asked to use the phone and called my mom to go pick up the kids, then I called the schools to make sure the kids would be ready when she got there. About 20 minutes later they showed up and the kids and my parents were able to hear Diane clearly say she loved them and held each of their hands.

While they were doing that, I slipped out to talk to the doc again, and by this time I think it was about 1:00 in the afternoon. The doc said she was stabilizing, and the RT (Respiratory Therapist) was going to put her on the 'Star Wars' tubes.

'Star Wars' makes you look somewhat like Darth Vader, hence the nickname. It is a face mask with a ¾ inch hose attached, and the oxygen cranked fully open to about 20L/min. On top of that there's a small vial of meds attached to facilitate lung operation and a tube hooked up to that pushing in the meds with another 5L/min of oxygen. Essentially it means there's 100% oxygen being forced into the lungs without any other trace gases. This would normally seriously damage a healthy person, but when you're in respiratory distress it's all they can do. The RT ordered this, and the nurse screwed it up, didn't know how to connect it properly. It's not a difficult procedure, but IMO it proves once again that you really have to watch what they're doing and make sure the nurses are competent.

On a side note, Delta Hospital Emergency department has a few really good nurses and docs, like Jane M., but there is also about half the nurses and docs in there that are incompetent whiners that over the years have misdiagnosed Diane, told me I would have to pick her up off the floor when she came in and collapsed from the pain, have accused her of 'over-dramatizing' when she's had severe chest pain (when a 40+ smoker comes in with acute chest pain, you DON'T screw around, you get them admitted pronto!), have treated her as a drug-seeker, and have even referred to me (her husband) as her son, to her face! These people I will likely address in detail in future writings, and I will probably be posting that info here, elsewhere and probably even send the comments to the Ministry of Health directly.

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