Living in a "Hospice House"

After Robin got the pump last night around 10pm I started to feel more relaxed, but we still had a couple of up and downs to get through. When I went to bed after midnight I found her awake and in pain. We hit the "extra dose" button once, and then 30 minutes later. The two extra doses seemed to be enough to make her mostly comfortable. For about five minutes she also had tremors in her hands and upper legs which she was not aware of until I asked about them, but the tremors settled down after she received the initial "extra" medication.

It's kind of weird being in a "hospice house". We do want her to be comfortable but there's not always an urgency to get her to the doctor immediately if there's a transient issue like the tremors (in a similar situation you might rush a person to the ER to have the person looked at). So long as the issue seems to resolve itself, we just take notes and mention it to the nurse later.

Obviously if we think there is a serious issue we wouldn't hesitate to dial the Hospice "on call" number 24 hours a day. No disrespect to the regular medical system which triages problems, but when we call hospice it feels more like we're talking to a family member on the other end of the phone. They've gone out of their way to make extra calls when needed to track down issues, and the few times we've called for assistance they were at our house in no time. I made a comment to a nurse this morning that we're grateful to have the "bedside service".

With respect to "serious" medical issues we have also been asked to not call 911, but instead to call hospice to discuss how to handle problems. It's not necessarily that Robin's getting a reduced level of care. In fact, one reason we call hospice first is because they can bypass the ER and get her admitted directly to a medical/surgical bed - we could then just take her to the hospital and put her right into an inpatient bed.

Realistically though, we might also enter a discussion (with Robin and the hospice folks) about whether to treat an issue, or whether it's time to let her body continue down it's path of shutting down. Obviously the goal of Robin's hospice care has already been defined - we're trying to make her as comfortable as possible right up to the moment of her death. A visible sign of this is a Do-Not-Resuscitate ("DNR") order posted on our refrigerator. Essentially, Robin's asked that extraordinary efforts not be used to try to extend her life. The DNR order in our home makes it clear legally to any emergency medical personnel that Robin does not want CPR performed under any circumstances.

When we first filled out the form I posted it on the fridge with magnets covering the DNR title - now there is a bit of denial…

Since then I have uncovered the words so that if it's needed in our home Robin's wishes will be clearly seen and observed.