Communication By Facial Expression

When I visit Gregory during meal time, which I often do, Manny and I take turns helping him with his meal.

When Gregory is with Manny, I help the other people at the table with their cloth napkins (do not call them bibs,) open and pour their thickened juice drinks, get a glass of ice water for Gregory and Martha (they seem to prefer it to the juice) and sometimes I help with feeding those who cannot do it themselves.

Directly across from Gregory is Alvira (close but not really her name to protect the innocent.) She is blind from what I can tell and when she does feed herself it is usually with her hands. Most often she waits patiently until one of the CNAs can help her, but on very busy days, I chip in.

She opens her mouth very little and therefore it is hard to get any food in. It is kind of like a balancing act but if one pays careful attention, one can get the spoon to her mouth at the right time and unload most of the food. She is on a "Puree Diet" so the food is creamy, moosey, custardy and it goes down easily.

When she is ready for the next bite, she will put her gnarled hand on your arm and stroke it. When helped patiently, she eats quite a full meal.

Yesterday I was helping her eat and I noticed that Gregory was watching us. He had such an engaged, empathetic, grateful look on his face watching me help Alvira. He needed no words to communicate to me that he was happy I was helping her and in some ways wished he could. His empathy for those around him is great and it is beautiful to see.

Expect the Unexpected

With July 4th over, I decided it was time to take the small American flags out of the flower center pieces that live on each table in the dining room. B was wandering around and when she saw one of the aides she asked, "Can I help you?"

The aide, busy as they always are, said, "Thank you B, but I do not need any help."

It was obvious to me so I asked B, "Would you help me get the American Flags and put them away?"

She followed me from table to table. I removed the flags and handed them to her. With each new set of flags, she asked, "Where should I put them?" B has the habit of repetitive speaking.

Each time, I replied, "Just follow me and I'll show you where they go."

When we had collected all of the flags, and B did a good job of gathering and holding on to all 26 of them, and having asked 13 times about where she should put them, we went over to the hutch and I opened the door. I pointed, "They go here."

"Here, you take them," she said.

"No, you put them here," I replied, pointing again.

After a "back and forth" of three or four times, she finally put them on the shelf in the hutch and I thanked her.

"You are welcome," said B.

The entire activity took about ten minutes (B moves slowly) but both she and I felt successful. B for having helped, me for having allowed B to help!

• • •

At the table behind Gregory sits S, a very tall strong man of 70 or 75. He sits at the table by himself because he is very unsocial and has a tendency to throw his food, juice, glass, napkin, and cutlery at people or at the wall if there are no people.

On the same day I helped B, I was helping Gregory with his dinner and S was banging his cup of juice on the table quite energetically. The cloth and everything else had been removed but he had the cup, three quarters filled with juice, firmly in his hand. I thought I would be helpful if I could take the cup from him and put it down on the table out of reach. "S, may I have the cup?" I asked. I was able take it from him.

Next S began lifting and bouncing the table at least as energetically as he had been banging the cup. The cup was about to go over when I grabbed it and began to put it on the chair next to his table. Then I had an idea. I offered him a drink by lifting the glass to his mouth as I asked, "Would you like a drink?"

He didn't fight me but drank as if he had been as parched as the desert. I stopped to let him take a breath and offered the juice again. He drank again. In fact he finished all the juice in the cup before I placed it over on the chair.

Maybe he just wanted a drink and didn't know how to do it or how to ask for it. Instead of reacting to his negative responsive behaviors, it was so easy for me to turn the situation around.

• • •

Across from Gregory at the dining room table sits A. 

A is blind, has a repetitive habit of tapping the table and/or smoothing her napkin or the table cloth. She needs to be fed by one of the aides so she sits in front of her meal until one is free to help her.

Gregory pointed at her a couple of times and mumbled affectionately about A, to me it felt he was empathizing with her. He gestured so gently and lovingly at her. At one point, Gregory began to cry over A's situation.

This caused F, who also sits across from Gregory, to begin keening at a loud, shrill pitch. "Where is my husband?" she cried. "I am worried about my husband," she informed and continued keening.

This caused Gregory to begin grieving over both A and F and crying as well.

Eventually A got fed, F was taken out in the hall to be soothed, and Gregory was at peace again.

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.

WARNING: Explicit Scatology

Dear J,

Thanks for your thoughts. Things have been so hectic that I haven't even had five minutes alone in which to sit down for our phone chat. Friday night G had some kind of virus (don't think it was food poisoning) had the runs and has given me quite a run since.

Shit himself, shit the bed all night. Luckily I had a package of hospital type bed squares with absorbent on one side and plastic on the other.

Slept most of Saturday in between me having having to clean him up. After some toast, tea, and yogurt he shit on both of us as he stood in the middle of the kitchen saying, "Oh oh, Oh oh." I didn't know where to start to clean up the mess.

I have started having him sit on the pot every hour on the hour. Have caught most of the accidents. His ass is so raw that it hurts to look at and I am applying medicated cream.

Woke him up through the night and again caught most of the accidents. But toilet paper skills were sadly lacking and that paired with communication deficiencies made it an almost impossible situation.

Today is Sunday and he is still messing his pants. We will have another binding banana and oatmeal for breakfast and see what the day brings.

All this with the inability to wipe his own ass let alone communicate his needs or understand my questions. So like a baby flailing in its poop, that is what I am dealing with.

When he is sitting in one place he still looks and feels like Gregory. But at least with this weekend's illness, none of the Gregory I know is here with me.

I know your comment "You are not alone." means you empathize with me and wish you were here to support me but guess what, I am alone. And numb. Beware the IDES of MARCH.

And Emma decided to throw up twice. At least she did it in the middle of the bathroom tile so the grout is safe as is the bedroom rug. A bit of humor.

Michael

Comment on "A Play"

This in response by my friend Pat to a previous post "A Play in a Series of Poems."

 heaviness, sadness, frustration,

confusion, depression, tears and at times desperation,

even if laced with love, compassion, insight, and humor

I think this describes life, and most plays too. Remember “The Outgoing Tide?” It’s all in how you tell your story. To have people pay, they want to have some empathy with or at least recognize the characters or their situations, see some change and growth, some crisis points, resolution (or not, sometimes) and in many cases, laughs are needed to relieve the deeper parts. And that’s entertainment!

(Click here to go to previous post.)