Sunday, May 4, 2008

First week in hospice

I think we've met everyone on the team we're going to meet for a while. In the early going, there are lots of forms to sign, decisions to make, people to tell, etc. It has been a really stressful week. We especially like the nurse case manager, Jennifer, and the chaplin, Bob. One of the biggest challenges this week was getting used to the idea that after three years of anticipating this, we're finally here.

We chose the VNA Hospice-At-Home because Susan's oncologist is the medical director and he'll get to stay in the loop with her case. They now know everything about her history, her meds, her wishes, etc. She has planned a trip back to Chicagoland to visit family in early June. She wants and needs to go alone. So there will be logistics to work out depending on her needs at that time -- minimally wheelchair service in the airports and notifying airline staff that she's a hospice patient with special wishes.

Meanwhile, we'll try to settle into a routine of getting a couple of visits a week to check on things. Susan has given up driving altogether because she is on some heavy duty pain meds and is at risk for seizures.

Jon is back in Denver indefinitely, living with us and will do part-time flexible work that can accommodate whatever the household will need. I have begun to slow down the speeding locomotive that is my work schedule so that I too can be more flexible. I also need to build in some time for myself and figure out how best to use it for my own respite.

So we're making adjustments, both tangible and emotional. Patrick will be done with finals on Tuesday and will drive home some time after that. We're looking forward to seeing him and plugging him into our new world.

1 comment:

Margie Kneer said...

This Margie Susan's cousin. Just a short note to say you are in my prayers all the time. Wish I could have gotten to know you as an adult.