Sunday, November 20, 2011

Worst night yet

There is nothing "lovely" about dying. After the trauma of her overfilled bladder and insertion of the catheter, she was resting reasonably and I thought we'd have an ok evening. The cancer and body shut down process dictated otherwise. She became very agitated. It also seemed as if she was in pain, and she could have been although she can't communicate where. I spent almost the entire evening up until about 1:30am working with the hospice nurses over the phone to figure out how to relieve the agitation and pain, and more importantly how to deliver it. Using trial and error, we finally hit a med combo that worked and she has been sleeping since about 2am. I dropped off to sleep on the couch for a couple hours.

I've learned a couple things. One, she will not tolerate the alternate delivery route. I need to find meds that can be delivered via IV or orally dissolved. She is still surprisingly strong and resistant. So secondarily, I need to have a helper 24x7. I'm strong, but I cannot maneuver her on her bed alone nor take care of keeping her clean. Any resistance is not futile, it works. At least against one person. She also has pain when moved so it needs to be a team effort. Thirdly, we need to change her anti-seizure meds. She went without last night and this morning. Trying to make that happen on a Sunday will be a challenge. But hospice is working on it.

So, here's plan. I'm letting her sleep some before giving her the easy meds (delivered through a gel rubbed into skin). I'll give her anti-nausea meds through her port. If there is pain, I'll add morphine. If she's agitated, I'll add Haldol, which worked last night when crushed and mixed with a little water. They are going to get me more of these either delivered or to be picked up. When my aide gets here at 8am we will get her cleaned up. I'll then call the service and have them arrange someone here 8pm to 8am so I have coverage 22x7, giving us a couple hours in the evening of private time. Lastly we will get her on a substitute anti-seizure med, likely phenobarbital, which will also have some sedative properties helping her agitation.

A verrrry stressful evening. Hoping for a nap this morning.

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