What goes up must come down

I was semi-prepared for Monday.  Since Sunday could be considered a "good" day I was semi-prepared that Monday would not be as good and that turned out to be true.  When I arrived Ed was quite tired and there was no thought of getting out of bed.

I asked to talk to the doctor (Dr Mackey for this week) since I came to the realization that Ed is getting no nutrients and hasn't been for several days.  I also wanted to understand what we were doing with the NG tube since this was really irritating Ed's nose and throat (it's the biggest source of discomfort right now).  Dr. Mackey ordered an x-ray to see if there is still a blockage and also put Ed back on an iv drip.  Dr. Z came by to see us late in the day to report that the x-ray showed signs that the bowel is still not working.  However, to confirm that, we agreed to stop all liquids for 12 hrs (overnight) and then they would drain his stomach through the NG tube in the morning.  A GI team will also be consulted in terms of whether we should consider administering any nutrients via an IV or inserting (another) tube in his stomach (to replace the NG tube).  I have to admit that I'm having a hard time keeping everything straight such that I can repeat it here.  However, I'm glad they are at least doing something to at least stabilize Ed and/or provide answers to outstanding questions.

We also had another frustrating day in terms of discharge and insurance.  I have decided to let the case manager deal with all this because I have no energy to jump through these hoops.  But as she was going through options, there supposedly was not a single one that would be totally covered by our insurance which just baffles me since I've been told we have good insurance.  And as she's explaining it, because of wanting hospice, some things are no longer covered.  I am just totally perplexed because I hear people talk about such wonderful things about hospice and now I'm being told with hospice things that were previously covered are not any longer.  And the case manager comes in with an answer to one option and expects me to jump all over it without information about the other three options we discussed.  Of course I talked to Dr. Z and Dr. Mackey about this.  It's just crazy and I can't believe I even need to be dealing with this.

Now don't get me wrong, the nurses have been great and they take good care of Ed.  It's the business side of this that is ridiculous and I wonder why I even need to deal with this.  But this is where I can apply my "business" skills and attempt to manage this aspect of Ed's care.  My goal and priority is quite clear and that is to provide Ed with the best care and comfort at this time.

Ed's body is failing though and I pray that God does not drag this out too long.  It has now been 3 weeks and for 2 weeks we had a different goal.  I know the end is near and I'm sad and heartbroken.  I just want Ed to stop suffering.  He is such a proud man and to know his body is failing him and that he is weak breaks my heart.  But I will continue to fight for him and what he needs at this time to be comfortable and know I love him.

Nights are the most difficult for me.  Days are full of things to do--caring for Ed, dealing with doctors and case managers--but nights are lonely and the house is empty without Ed.  For those of you who have had to go through this yourself, I know you came through it and I know I will as well although there are times I have doubts.  But we grieve and we hurt because we love and if I focus on that love that Ed and I shared for 30+ years, then I can smile and be thankful for that.