April 3

Not sure why he’s wearing a shirt in bed or why this is so grainy

On this day a year ago I was lying in bed reading before falling asleep and Randy was pacing around. I don’t remember if he was talking, but he seemed anxious and I was irritated. I kept asking him to come to bed - he must have been saying something or I wouldn’t have kept saying it. Finally I said, Will you PLEASE come to bed?

Unfortunately, this is who I am sometimes - my go to thought is often “no” or “stop that”. My first thought is not usually, How can I help you? And for some reason his behavior didn’t make me think that this was the very end of his life. Maybe when the neuro-oncologist said 1-3 months I just took that as gospel.

Anyway, when I heard that irritation in my voice it occurred to me that something was wrong and I asked him if he wanted to go to the hospital. Because that was another go-to for me - if there was something wrong with Randy, a hospital was probably advisable.

He said yes and I got him dressed and into the car, having no idea what was going on. All the way to the hospital every time we hit a bump he would moan - he was in so much pain.

When we got to Emergency I told the doctor the story - including that we had an appointment the next day for a hospice nurse to come out. She said she didn’t want to knock him out because the hospice nurse would want to talk to him and those appointments are hard to get, so she gave him some IV morphine and sent us home. Throughout the duration of the morphine drip she and I would ask Randy if he was in pain and how much pain. Frustratingly, he kept saying he didn’t know. But he didn’t seem to be restless and and he didn’t say he WAS in pain, so after the drip I got him back in the car.

The drive home was just like the drive to the hospital - Randy moaned every time we hit a bump. I asked if he was in so much pain why he didn’t say so when we were at the hospital. He said, I didn’t even know what was going on in the hospital. And again, I was frustrated rather than worried.

I wish now that I had had someone knowledgeable to talk to about this. But the ER doctor wasn’t an oncologist and since Randy wasn’t yet under hospice care I didn’t have a 24-hour number to call. Maybe it would have been better for me to insist that he be admitted for pain treatment and have someone from hospice come and talk to us there.

This is one of the many memories that haunts me. I wish I had done better but I know I was doing the best I could. That just isn’t much comfort.