Further Decline

I went away for the weekend.  I went far away.  Where is not important.  I needed it.

This is a busy time of the year at the University, so I haven't spent a lot of time with Gary. Between emotion, work and grief, I am choosing not to go to him very often.  Yes, it is a choice.  A Very HARD choice.  The Saturday before I left for my trip, I went to visit Gary and do the ritual trimming, clipping, etc for him. 

On that day, he did not know me.  For some reason, that doesn't bother me anymore.  As I walked out and knew that I would not see him again for a week and a half or so, I felt reminiscent of old times.  We used to travel together and have great times.  I am so thankful for those years and that we did not wait "until we retire." 

While I was on the airplane waiting for take-off to come home, the Hospice Nurse called to inform me that Gary has had further decline and they are changing his medications and taking him off several medications that he really no longer needs.  There is no point in managing his cholesterol....

He cannot swallow the pills anymore so they are moving to an applesauce based crushed medication of his seizure meds and Prozac.  His hand is now completely atrophied and swollen about 3 times the normal size.  Apparently, this happens with FTD.  His hand is also now exuding an unpleasant odor.  So, they are giving him a brace and some medication to attempt to alleviate any discomfort.

The nurse continued to say that he is staring more-so than before and non-communicative.  I expressed that this was not new and she indicated that he is worse.  He also is extremely hunched over in his wheelchair and cannot sit up straight.

So, when I got home to Orange County from a 12 hour travel delay, I went to work and then straight to visit Gary.  He was sitting at the dinner table in the exact position the nurse had described.  One of the angels was feeding him soup.  As I took over, I noticed that he had soup all over his bib and napkin and I became irritated.  For a moment I could not understand why she was so sloppy. As I started to feed him my perspective changed. 

He was so hunched over and crooked that when one put the spoon to his mouth, it spilled due to the severe angle.  I could not refrain from spilling it either.  Gary used to say "Experience is the only REAL truth."  Lesson learned.

So, he got the rest of the bowl of soup by me merely dipping the spoon in the soup so remnants of soup stuck to the spoon.  This prevented spillage and enable him to put the spoon in this mouth.  This method took quite a while to finish the soup.  I tried to prop him up in the chair but his body would not cooperate.  How uncomfortable he must be.

I finished feeding him his dinner and took off his bib to reveal the swollen hand.  He was grasping around a washcloth they had rolled and provided to attempt to keep the hand from curling further while waiting on the brace. I gasped audibly when I saw it.   He had no reaction.  That doesn't mean that he can't hear me or that he is not comprehending what is happening.  I am careful not to talk about him in front of him as if he is not there. 

I grasped his healthy hand and moved my face down to look in his eyes.  His eyes were bloodshot and full of mucus.  I used some eyedrops to hope that he felt better.  He was pale and now strikes me as looking like an older man.  He never looked his age until now.

I kissed him and he puckered to kiss me in return.  I said, " I love you." He replied, "I love you."  It was repetition, NOT a response.

I left.  I came home and ate dinner and then went for a massage to attempt to further heal my neck injured in my recent car crash.  A friend called and we processed the pending death of my husband and how I am feeling/grieving/compartmentalizing, etc.  I have no idea how I will handle this but know I should embrace every moment as a celebration of his life and not a grieving for what was.