The Train is coming (scary day)

Well, it was supposed to be a quiet day. It started out well with Robin, Dad and I hanging out in the bedroom upstairs for the morning and early afternoon.

We weren't supposed to have any visitors or any hospice folks today, but there were a few changes in Robin (mainly that she said she "did not feel well" - but in hindsight there was also a slight slurring of her speech and more spastic movements today), so I asked the nurse to come over and check on her. Around 2:00 Robin started napping. Around 3:30 the nurse arrived and we showed her to the bedroom where Robin was resting.

We tried to wake Robin up but she couldn't be roused! She sounded like she was sleeping soundly, but nothing could wake her - talking loudly, rubbing her limbs. We stopped the IV pain med pump, the nurse examined Robin, and then the nurse started making some phone calls. After a few minutes Robin suddenly came out of it. She seemed OK but groggy, then she started to cry.

Apparently waking up was a good sign. It appeared (at the time) that her problem had been caused by too much methadone, so the nurse disconnected the pump and the plan was to reconnect it at 9:30 this evening, but at a lower dose (a six hour relief from the pump medications). Robin was pretty confused, but she seemed stable when the nurse left. Then things got a little crazy. Robin started to get agitated but we talked to her about things she done and places she'd been too - plus we played some music. She was happy for a long time, but after two hours she started getting confused. She started thinking someone was under the bed, then thinking that someone was just outside the door trying to get in. At one point Dad walked into the room and she asked him to stand against the door to keep it closed, while she instructed me to block the entrance to another door with pillows.

This was too much! We called Connie (Robin's nursing friend) who headed right over (it's snowing here today, but her husband drove her over and then picked her up at the end of the night!). We also called the hospice "hotline" and I talked to the nurse. Today we hadn't kept Robin on her med schedule, so the nurse immediately suggested getting a few drugs into Robin's system- one of which helps with anxiety and calms the nerves. While I was out of the room making these calls, Dad reported that Robin crawled over some stuff on the bed and tried to start looking over the edge for someone underneath.

By the time reinforcements had arrived Robin had calmed down. She was still pretty confused and she still couldn't hold a conversation (even now she can't). The on-call nurse got the methadone pump restarted on a lower dose, but she said (privately to me) that many of the symptoms appear related to disease progression and not to the medication. For instance, when you talk to Robin her eyes will now drift upward and she'll lose connection with the conversation.

I asked the nurse how long Robin has got left (would it be days or weeks) and the nurse said "either". She noted that Robin's young, has no other disease and has a strong will so it's difficult to know.

She also added that everyone asks this question about their loved ones, as if knowing the answer will make it easier to deal with the patient's passing. She explained that when it happens it's going to be like getting "hit by a train" and knowing exactly when it's going to happen would not make the impact any easier.