Palliative care and loss of appetite

It's summer and life is in full swing.  I'm keeping quite busy but thought it was time for an update on the diabetes front.

We had an interesting visit with a palliative care nurse from our HMO.  Palliative care is pre-hospice. We had gone to see the Endocrinologist and I asked a simple question:  Who do I call if he goes into a coma?

He does not want to go to a hospital.  He does not want dialysis.  He does not want a kidney transplant.  So when something happens, who do I call?

By having palliative care set up - I can now simply call Hospice and they will take over his care if he is in a coma.  Here at home.

He has his periods when he is doing just fine.  I think he will live to be 90 years old!  But then there are other times like now.

He is not eating.  He's lost his appetite.  So he was having middle of the night sugar crashes with intense cramping.  Because he was still taking his full insulin levels....while not eating.

He has cut his insulin in half.  (Humulin R U 500 concentrated).  Was at 40U each at morning and night, now at 20U each at morning and night.  His Endo told him he could adjust by 20%.  He's adjusting 50%.  I think he needs a return visit.  Not part of his agenda.

He lost about 20 pounds, but nothing since.  Eating half of what he did and not losing weight.  Those numbers don't add up.

We are finally seeing a Nephrologist the end of next month.  Only took 6 months to get in.  Sigh.

Adjusting the Humulin has stopped the night time lows.  That's good.  He said he is working to get himself back on even keel.  I wonder if that's possible.  With no appetite, he no longer wants to go out to eat.  He has no joy in cooking so that is falling more and more on my shoulders.  But if he doesn't want to eat, what do I fix?  Interesting quandary.

He seems to still like ice cream drumsticks.  Can one live on those?  Probably not!

Am I concerned?  Of course I am!  What can I do?  Not much at the moment.  It is his decision to seek medical advice - to go see his doctor.  I recommend it just about every day.  And he declines.  He is still making the decisions about his life.  I watch and I wonder.  :)

So I try to live as normal a life as I can.  What is normal at this point?  I'm content with gardening and art classes for now.  He is holding his own and I really think he will bounce back out of this....but at the same time I'm trying to prepare both of us for the next phase of this disease.

DW