3 AM Monday Morning

Realizing quickly that nothing is normal when you move into hospice care. No normal routines are schedules need apply here.

Agitation at 3AM, John’s pulled his gown and oxygen off and is anxious and agitated. This is after an uneventful evening. I’ve a call into the nurse to advise about added meds, an added Ativan, perhaps?

I think he is concerned about his heart rate and the a-fibrillation – the only thing I could understand was a comment about someone coming to “take his vitals”

We’ve taken an ativan at 4:00.


John and Hospice

First full day
Things you should keep in mind for future reference:
  • Make sure you have sheets that fit the hospital bed (I had to add a panicked trip to Target yesterday to a full agenda – and they need to be twin XL, not a common size)
  • Have lots and lots of towels, bath cloths and clean sheets on hand, same with blankets
  • Make sure that the hospice firm’s pharmacy has sent the comfort drugs to the house before you get there (they got there about 2 hours afterwards)
  • Have extra bed pads and briefs on hand if you get home late (the hospice provider’s supplies don’t arrive until today)
  • Have trash cans/hampers at hand – all lined with trash bags
  • Make sure you have laundry supplies
  • Start letting your friends know right away – they will likely be useful or at least lend an ear or shoulder to cry on. Don’t wear them out.
  • Expect to cry unexpectedly sometimes
  • Figure out strategy for work and set expectations
Note that he no longer is checking email or voicemails, so anything should go through me.
He is refusing food today and sleeping. I think this is the next step, since he is more comfortable at home. I’m not pushing anything – he still likes ice cream. I’ve asked nurse about decreasing time between Xanax doses.