Theater and The Full Disclosure

Yesterday I posted a fantasy about Gregory and me. I thought it would cheer me up to not tell the same old sad story. It did cheer me up for a while thinking about fond memories but the problem with fantasy is that it is NOT reality. And in Alzheimer's case even reality is often NOT real.

Last night we went to the opera "Orpheus and Euridice" by Ricky Ian Gordon which was presented at and in the Eckhart Park Pool. It was given as a free performance by the Chicago Opera Theater (to which we are subscribers) as well as the Chicago Park District and the City of Chicago's Classics in the Parks.

Obviously the swimming pool setting was unusual. And Gregory had a difficult time of it. He kept dozing off and when awake his face was somewhat blank. Possibly he was not registering the action of the opera. I would point his face toward what he should have been watching and I could not tell what his eyes were doing.

I enjoyed the opera but sat there for 70 minutes without an intermission wondering if we would get through it and what would happen if we had to leave since the exit was on the opposite side of where we were sitting. And the action was all around us (including one exciting moment when the dry ice "fog" started filling the entire pool floor area from under our seats. We made it ... but with a mental note to consider future performances and wondering how long we would be able to continue our active theater and opera life.

  

  


FULL DISCLOSURE SECTION

This morning after he took his morning dump (announcing as if it was a miracle) he stood to pull up his pants. No you did not hear me mention the part where one cleans one's ass with toilet paper and then a moist wipe. And one cannot assume that took place.

So I popped up from the computer to check the "pot" and sure enough ... lots of shit but no toilet paper. When I mentioned that he forgot to wipe he did not know what I meant. "You need to clean yourself." Still no comprehension. So I went into my, "Sit back down." Which he did after repeating myself two more times. "Use the paper (pointing.)" Which he did several times and miraculously monitoring how many more wipes he would need.

"OK, how did I do?" he asked.

"OK, I replied," thinking "Sad."

This scenario has repeated itself a number of times recently so I am beginning to think that I need to monitor every time he uses the bathroom. I guess I should be grateful that he recognizes (not always) the urge to visit the bathroom most of the time. Sometimes he will get agitated and his face will tell me something is wrong. I will inquire to no avail and usually then suggest he go to the bathroom and that seems to settle him down. Don't know if in effect he needed to use the bathroom or if the distraction allowed him to forget what was really upsetting him.

I don't even try to figure these things out anymore (except here to process for myself and for your benefit.) A SHITTY story don't you agree :-?

Companion Report #2 by K.C.

It’s been approximately 12 months since I first met Greg and his symptoms seem to be gradually getting worse.  Below are some changes I’ve noticed in Greg, as well as things that still seem to remain the same.  I should note, however, that my observations are highly subjective.

Things that seem to have changed:

Greg’s capability of using words has declined slightly. Words do not come out as he wishes, and he frequently makes mistakes even when they do come out.  Sometimes, the word itself is correct, but it is not the right choice.  For example, when I went painting with him, he said “red” looking at “blue”, and this happened a number of times.  Other times, he struggles saying words.  For instance, he said  “pint, pinkle…” when he meant to say “pink”.  His struggle for words is not anything new, but it seems to me that the frequency has slightly increased. 

He needs more assistance in everyday life activities (getting dressed, preparing lunch, cleaning up, etc.).  He gets confused, disoriented, and even simple tasks can tire him out.

It seems like his hands shake more often than before.  This is especially noticeable when he is trying to bring food or drink to his mouth.

His dependence on me has increased.  This has to do with him needing more help, but also his feeling more comfortable around me.  For example, he might tell me “you do it!” when I’m trying to explain how to put on his scarf before we go out.

He might get tired more easily than before.  After we go for a walk, it seems like we always speak about how tired we are. 

Some routines he had little trouble with several months ago are getting more difficult for him.  I was surprised when he asked me to make his lunch for the first time.  He used to put together a nice salad for himself, but now it seems as though he lacks the confidence to do so.  However, I would suggest that his forgetfulness has not happened over night, and it seems to do with how long it has been since he last made lunch.  Apparently, it had been quite some time since he last made his salad, which may play a role in why he forgot how to do it.  

Things that seem to remain the same:

I have never noticed any changes in his personality.  He also does not have mood swings either, and he is still the same Greg that I know.

I have never noticed Greg hallucinating.  His sense of smell, sight, hearing, still remains the same.  Perhaps delusion is not the right word, but there are certain things Greg believes, which are unrealistic.  For example, he believes that Meryl Streep lives near by (I haven’t checked whether this is true or not, but seems unlikely).  I’ve heard this a number of times from Greg.

Memories from the distant past seem to remain pretty much the same. 

He can still sympathize and understand what others are feeling.  For example, when I was talking to Michael about how a package sent from Japan was stolen, Greg knew how upset I was and he sympathized appropriately.  

Although Greg sometimes forgets to flush the toilet, I’ve never helped him use the bathroom.  He goes to the bathroom when he wants, and he has never asked for help.

Although he doesn't remember people’s names, he still recognizes them. Occasionally, we bump into somebody we know—or somebody he knows, but he always recognizes them, which is a good sign.

We can still communicate even though he cannot express what he wants to say perfectly.

His walking speed has not changed, and he has no problem swimming.

I have not noticed any decline in his appetite, and he still eats quite a lot.

Although I do not know how much he understands what he reads in the newspaper, he still sits down and reads it.

Conundrum

I don't know what's better...
When Gregory doesn't understand or
When he thinks he does.