The C Word – Settling In

It’s hard to believe it has been a week since I last posted.  It’s been a busy week but not an overwhelming week for us. 

The great communication between all the various arms of hospice has been great.  George has had some changes to his TPN solution based on his Monday labs.  The pharmacy is good about contacting me with what is being changed and letting me know if there is some adjustment I need to make at home (i.e. amount of insulin to add).  George only needs to infuse 16 hours a day so we are now able to get those in during evening, night and early morning so he can be free from attachments for most of the day.  It makes my day easier as I don’t have to help him cart the TPN backpack to and from the bathroom. 

They always make sure he is comfortable with the care he is getting.  Now that the first rush of hospice workers has all come to introduce themselves, the main visits we get will be the nurse(s) for labs and dressing changes.  At least for now. 

The social worker made it a point to get back to us within 24 hours with the contacts for bereavement/anticipatory grief counseling in Roseville and Stockton so all the kids and grandkids can begin working towards taking advantage of this service. 

I’ve settled into a routine at home.  I plan the start time for his nightly TPN to coincide with whatever may be going on the next day, allowing time to stop the machine and do a glucose reading before we or I need to step out.  I’ve got the set up down to a science.  Got the showering under control. 

We are still tweaking food choices for George.  It just seems so limiting.  Not only do the foods have to be low-fat soft things or full liquid, they need to have some flavor and satisfaction for him.  We’ve found a few things… scrambled eggs, ice cream, Cheetos, cheerios, rice krispies, garlic mashed potatoes.  But even with these safe foods, George often feels uncomfortable after eating them.  I’m sure it’s discouraging for him. 

The mental aspect of all of this is taking a toll.  Between not feeling well, feeling trapped in the house, feeling tethered to lines, feeling tired all the time… for him it’s just an endless cycle with no clear end in sight. 

I can offer him an ear to listen, a hug or embrace, a hand to hold.  I can nurse his physical wounds to some degree.  I can reassure him time and again that I will be there for him, that I’m not going anywhere.  What I can’t do is get inside his head and make things better.  For that, I am helpless. 

For that I need to just pray for something to click, for something that gives him release from the torment of the prison of his mind.  I pray that he can reconcile things and get some peace.  I pray for God to reach down and help him in some way, shape or form.  Send him a clear signal.  Sometimes that’s all we can do - - just be quiet and pray.