The C Word – Yet Another New Normal

This past week has been a whirlwind of change for us.

The PEG line (G-tube or gastric tube) provided much relief from the irritations caused by the Ng tube.  The tradeoff is that the opening made in his belly causes some discomfort – but minor in comparison. 

He wavered for the better part of the week regarding whether or not to go ahead with surgery.  In the end, he concurs that the negative variables outweigh the positive.  He’ll still ask some questions at Dr. B’s office on Thursday.  But he is so weak right now I can’t fathom that even Dr. B. would think it a good idea. 

On Friday he was finally discharged.  The hospital lined up Pathways Home and Health Care and Silicon Valley Pharmacy to handle the TPN care.  Friday was a total day of non-stop activity for me.  From talking to the pharmacy, running last minute errands, lining up home appointments for intake and delivery of TPN, etc., I don’t think I sat still (let alone sat down) from 11:30AM until after 8PM.

As soon as George was discharged (3:30PM), I took him home and got him settled.  Then I ran to the pharmacy for a prescription and a glucose monitor and supplies.  I got home and woke George up to take a shower before he got hooked up.  The nurse arrived right after that (5:15PM).  It took 2 ½ hours to go through the intake work and then set up and hook up the TPN.  George pretty much slept through all of that and then wanted to go to bed as soon as she left.

After getting him to bed, I went back to living room to try to get some things cleaned up and organized.  I sent an email out to a bunch of folk and tried to set up a visiting schedule on our Caring Bridge site.  It was 11PM by the time my head hit a pillow.  George woke up twice to go to the bathroom which requires assistance.

The TPN is run on a pump so he can go anywhere with it.  The downside is that the between the battery and the amount of TPN fluid, the backpack that holds everything is extremely heavy.  Too heavy for George to carry.  On top of that, when he has the G-tube drain connected, that can add additional weight to carry around. 

One of the hardest parts for me is to try to figure out some sort of routine that can be maintained and allow me some time to just “be” or to get back to my craft room.  I am still recovering from a week at the hospital with him so am doing this in a slow fashion.  But I am not known for wanting to wait – I would like it all to fall in place easy.  Each day I think I am making progress in the routine so I can have some “sit” periods. 

George has been so weak.  After a week of laying in bed (with the exception of two walks around the ward), his muscle tone has decreased.  The first two days home he kept bumping into walls.

The other hard part is seeing George like this.  Emotionally he is not doing well at all.  He views this as his death sentence.  He goes to dark places.  And he is emotionally wrought with guilt over all the work I must do for him right now.  He is exhausted and sleeps a lot.  So many things he is dealing with right now.

I am helpless to change anything.  My job is to nurture as best I can.  To help him try to deal with the myriad of thoughts and emotions.  To just allow him to vent without trying to fix.  At times when I am exhausted, this can be difficult. 

I’m battling either allergies or a cold right now – and that doesn’t help.  I would love to crawl into bed at 7PM – but I still have things to do for him until 8:30 or 9:00PM.  Sometimes it is hard to let my brain find a resting place. 

It will happen.  It just takes time.  There’s a whole lot of newness to caring for George with more duties than I have ever had before.  With our luck, as soon as I have a routine going, something will happen and I’ll have to adapt yet again. 

I’m hoping that things will settle in and he will feel like going out for a ride or getting a drink somewhere.  Although he was on full liquids at the hospital, the home notes say clear liquids.  I’m hoping he can go back to full liquids as that means he can have certain foods pureed so he feels as though he is eating something.  He needs to have something to look forward to.

A lot of adjustments in a not-so-good looking place in our lives.  I pray every day to just get through the day.  That’s about all the energy I have right now.  It takes a lot of energy to find a new normal.

If anyone would like to visit, please call first – or sign up for a slot on Caring Bridge. (https://www.caringbridge.org/public/angelsforgeorge).

I also need some help in order for me to get out of the house.  Since George cannot carry the backpack containing his TPN, someone needs to follow him to the bathroom and then go back to retrieve him from the bathroom. I’ve got a few times already posted and will add as I know schedule changes, etc. 

Please continue to keep us in your prayers.  George for comfort and healing.  Me for strength and good health.