A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

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.

Further Adventures in the Life

For several years, Gregory has had a book, really a perpetual calendar, of photographs of architecture of the world. Each day he would turn the page to reveal a new famous building from around the world. Often he would call me over to enjoy the photograph with him.

Many of the buildings he knows or we have visited. Considering that his language skills continue to disappear (almost all gone?) it has always been an easy way to "share" an experience by "looking" without the need for "talking."

Just in case you are uncertain about what a perpetual calendar is, imagine a 365 page book, with each page having the name of the month and number of the day but no day names and no years. So you can look at the building for January 25th no matter what the day of the week or the year.

For Christmas I found another book by the same publisher only with famous paintings. I thought this would be a great addition to his library and to his daily routine, especially because he continues to loose skills and therefore has fewer things to do.

Turns out that the arrival of the second book coincided with the beginning of his being unable to remember the routine for using a perpetual calendar. Even when reminded of the day's number, "Today is 25," he has been unable to follow through with finding the page that has January 25 on it.

Every morning he calls me into the living room to go through the steps. Every morning he does not remember what we talked about the day before.

I cannot, first thing in the morning, sleep still in my eyes and on my mind, teach him how to do something that he will never learn how to do. I cannot explain to him what I am feeling without hurting his feelings and I cannot continue to explain the explanation every morning.

So at the risk of making him "feel less" but with the benefit of helping me not be angry or frustrated every morning, I told him, "Every night before we go to bed, I will take over turning the pages so the books will be ready for you in the morning."

He was OK with that (at least on the surface but who knows what he really feels below the surface as he is unable to explain or describe his feelings.)

I wish that I could make these transitions (which I really don't mind making) more smoothly and not after anger, frustration, and unkind words to Gregory. I work at bringing my emoitonal reactions and my intellectual understanding closer but FUCK, I am so tired ... and lonely ... and sad.

Today

Today I feel:
     sad
     frightened
     lonely
     angry
     empty
     unhappy
     tired
     frustrated
     overwhelmed
   
Then I ran a very hot tub, turned off the lights, and meditated. I realized that it could be (and will be) worse, but for now OK. I realized that nothing MAJOR or DANGEROUS or INCURABLE or UNREPAIRABLE is happening or changing. I realized that the SUM TOTAL of it, almost ten years now, is what gets to me, PIECE by PIECE and at times PEACE by PEACE.

So now I am dried off and dressed. Writing. Feeling better. Thank you for asking!