My Shoulders Hurt

The Atlas from Greek mythology, carried something very heavy, possibly the weight of the world, on his shoulders. This was a punishment that came down from Zeus, king of the Gods. Atlas' punishment was meant to last forever. It is often said that Atlas carried the world on his shoulders, but it might be more accurate to say he carried the heavens on his shoulder. It presents an interesting, insoluble puzzle to try to figure out where Atlas would have to stand to carry the world on his shoulders.

For the last two weeks, both of my shoulder rotator cuffs have "gone out."  The rotator cuff is made up of the muscles and tendons in your shoulder. These muscles and tendons connect your upper arm bone with your shoulder blade. They also help hold the ball of your upper arm bone firmly in your shoulder socket. The combination results in the greatest range of motion of any joint in your body.

Needless to say the range of motion has been quite limited and the pain encountered when going through daily life activities has increased. Vicodin helps me sleep. Massage and acupuncture will help over time. Exercises and not stressing the cuffs will help. But meanwhile, ouch!

When this happened I asked myself, "Why?" I did not injure myself or do any unusual heavy lifting. Maybe I slept wrong? I do believe that a person can bring an illness on himself but I have been doing so well with carrying both the weight of Gregory and my life, that I would like to think that I have not become jealous of Atlas.

Everything I have been doing in the last two weeks takes so much more energy, there is more that I cannot do, the fact that with Gregory's situation I have to "do it all" has become painfully apparent. Literally and figuratively. Atlas can carry the weight of the world (or the heavens) on his shoulders, all I ask for is to carry it for the two of us.

Things For Which to be Grateful.

The other day I was analyzing my life. No, not on paper but in a few minutes of day dreaming. When I arrived back, I realized that my life was pretty predictable and I liked it that way. I know that things can always change on a moment's notice but at least for today, and probably tomorrow, my life is predictable.

For example, I no longer worry about career path. I am what I am and while I still have ambitions, I do not worry about my next job, my next college degree, my next obligation to the world. I only have to worry about my next obligation to myself and to those I love.

I do not have to worry about a growing family, about sending my kids to college, about having my kids move back into the house, about buying and furnishing a new house. I do not have to think about moving, about which city I want to live in, about needing a new car.

I have a wonderful family of relatives and a wonderful family of friends. Sometimes it is difficult to keep in touch with all of our friends let alone worry about finding new ones. For the most part my friends have been friends for ten, twenty, thirty years. By now we all know each other pretty well, accept each other for who we are, and do not stand on pretenses or assumptions.

I can choose from any number of favorite restaurants at which to eat, grocery stores at which to shop, cinemas at which to watch movies, museums to attend, operas musicals and plays to see, paths in the neighborhood on which to walk.

Having reached a certain age I do not have to do things I do not want to do or go places I do not want to go. Since the aging process is a slow one, very often by the time an ability is gone I find that I do not miss it.

Even my life with Gregory has become predictable. Whenever I think he is, he isn't. Whenever I think he knows, he doesn't. When things are supposed to be in place, they usually aren't. When tasks are reportedly accomplished most likely they are not. When conversations are initiated by him, they do not reach completion. When memories are searched they remain hidden. Associations are not associated and connections are not connected.

I have learned to live this way and even on our journey with Alzheimer's, I am strangely content.

The Good, The Bad, and The Ugly

Dear Family & Friends, 

Often you ask, "How are you two doing?" That is always a difficult question to answer if only because the answer is sporadic, erratic, changing, and cumulative as well as formative and summative. Not to mention joyful and devastating.

As for how we are doing, at the risk of being rude, check this ALZ BLOG. The highlights of our life live here. Maybe what the blog doesn't show as often as it should is that we are coping and getting through our days successfully even though Gregory continues to decline. 

I keep reminding myself to post some of the good stuff but usually the blog is a place for me to turn to to find a sympathetic ear if only it is my computer and to process my thoughts and experiences. 

Hope all is well with you and as always, Gregory and I look forward to seeing you.

m&g

A List of the Good

Have watched several great movies on NETFLIX like "Little Ashes" and "Departures."

Saw "Man of la Mancha" at Light Opera Works in Evanston.

Met with a friend for a 4 hour interview and looking towards the possibility of being included in her book on Gay Issues. More on this later.

Next week we are "light walking" as part of tech rehearsal at the Lyric Opera of Chicago in which we receive free dress rehearsal tickets to all of this season's operas.

Planning on having some of the condo painted after five years of gentle and loving use.

Tonight are going to the Carillon Concert at the Chicago Botanic Garden.

Continue to create interesting (if not photogenic) dinners and baked goods.

Got good reports on our recent whirlwind of yearly medical check up, eye examination, and dental cleaning.

Continue to feel blessed about so many parts of our life. 

Continuous Agony

This morning he heard me say,

"I'll get you a muffin to start your breakfast."
Saw me take it out of the refrigerator.
Watched me put it on a plate.
Observed as I put it in the microwave to warm.

He heard the microwave DING finishing.
Heard me say, "You can get it now."
So he sat down and waited at the counter.
He didn't get ... "Get it" ... or what that meant.

No associations, no connections
Between muffin, refrigerator, and plate.
Between Microwave, DING, and "Get it!"
So I did it for him and he said, "Thank You."

But I couldn't respond because I didn't feel thankful.

Hangering and Bench Identifying 101

I may have written about this previously but last night I realized that for Gregory, the concept "hanger" is mostly gone.

We have three types of hangers: Regular, Shirt, and Shorts.

The Regular Hanger is white plastic and is used for most shirts and long pants. The Shirt Hanger is also white plastic, has plastic shoulders, and is used for soft, knit shirts that will show hanger marks. The Shorts Hanger is wooden with metal clips.

Shirts are placed on the Regular Hanger with the top buttoned closed so the shirt will stay in place. Long pants are folded in half and looped through the Regular Hanger with approximately half of the pant on each side.

Sometimes soft, knit shirts are placed on the Shirt Hanger with the top buttoned closed so the shirt will stay in place and other times the hanger is slipped through the bottom (on pull over shirts) and again the top button is fastened to keep the shirt in place.

The shorts are folded and then secured upside down to the metal clips of the wooden Shorts Hanger.

Now my guess is that most of my blog readers could pass a "Pop Quiz" on hangers: 1) types, 2) purpose, and 3) hanging method. (A little sarcasm here.)

Lately Gregory stands in the closet at bedtime pondering and studying, what for him must feel like a "Final Exam." Sometimes he will pass the exam, sometimes he is creative and using unorthodox problem solving methods he reaches the correct solution, and sometimes he receives a failing grade.

After Gregory has failed the exam, enter Professor Michael who still tries to "tutor" Gregory in the art and science of "hangering." When will Michael learn?

Actually last night I came to the conclusion that I should (as I do in other areas of our life) gently, lovingly saying "Just leave it on the bench and I'll take care of it." That might bring up the next course of study at AU (Alzheimer's Univeristy) which both Gregory and I are attending in our own ways: "Bench Identifying!" But I'll not think about that for now.

K.C.s Report

If you have been following this blog you know that we have two college student companions spending time with Gregory when I have "stuff to do," meetings to attend, or just need time to get away from the 24/7 of Alzheimer's to play. Each companion spends 4 to 8 hours with Gregory per week.


I asked each of the companions to write about the time they have spent with Gregory up to now. I wasn't sure what I expected or wanted them to write about but I was hoping for a perspective through their eyes of the time they spend with Gregory.

K.C. is a graduate student at Northwestern University studying Clinical Psychology. This is reproduced with his permission. B.P.'s report was posted a few days ago.

My Time With Greg

                                                                              KC August 12, 2012

Our time together

During our time together, we always have a great time and we both enjoy each other’s company.  We go for walks, have lunch, run errands, read, take naps, watch movies, and the list goes on.  I look forward to seeing him every time, and I get the feeling that he does as well.  Although he struggles from Alzheimer’s, there is a lot to learn from Greg as a person.  He is a great person and has made me realize many important things in life, and I thank him for that.

I think the relation we have now is different from what it was at the beginning.  He now feels comfortable being around me and also asks me favors more often than before.  I am not saying he has become dependent, but not hesitating to ask me is a good sign of our good relationship.      

Things Greg has trouble with (not always, but most of the time)

·      Figuring out where to hook his water bottle when we go out, or how to drink it after it’s already hooked on (he usually takes the cap off first, while the bottle is still hooked on).

       Figuring out how to hook his cell phone, or occasionally answering it (he would give me the phone to answer)

·      Figuring out which switch is responsible for the lights

·      Getting dressed or undressed

·      Figuring which keys to use (not for the house door, but other doors in the building).

·      Remembering or saying names

·      Conversation in general

·      Remembering certain things such as bringing his cap when we go for walks, buying milk, etc.

·      Sense of time

My Observation (What I’ve noticed)

I am not an expert so I do not want to make speculations, but there are some things I’ve noticed about Greg.  I’ve randomly written down things that I’ve thought about from the time I first met him. 

1.  I think he remembers quite a bit of what we’ve done in the past.  He might not be able to tell you the specifics using his words, but I believe he remembers the event.  The reason why I say this is because he sometimes will tell me something about what we've done or episodes from our time together.  Another reason is that he seems to be able to recall quite a bit when I tell him about what we’ve done in the past.  In other words, if I guide through him, he will know what I’m talking about.  

2.  It seems like events that involve some type of emotions are remembered more than events that aren’t.  Perhaps memory that is connected to emotion means more to him and thus better remembered.  Again, he might not be able to explain details using his words, but he knows how he felt or knows that the event occurred.  For example, although he might not be able to explain what we did that day, I think he knows that we had fun (that’s what counts!).

3.  Putting him on the spot does not help him retrieve what he is trying to say.  What I mean by this is that when he feels some pressure to say things correctly, I think it just makes it worse.  I have realized that asking him questions is not always a good way to communicate because he tries to say it right, but fails.  For instance, if I ask him “what’s the book about?” he might not be able to explain it because it is a question that requires explanation.  However, if I ask him “do you like the book you’re reading now?” he would either say “yes” or “no”, and then he might be able to explain about it better because I didn't ask what the book was about.

  

4.  I think that a lot of the time his memories are available, but not accessible.  What I mean by this is that it is probably somewhere in his mind, but he has trouble accessing the specific information that is needed at the moment.   

5.  When we go for walks or go to certain places, there is always a certain way he wants to take me.  He usually refers to “this way” or “ that way” and we always go the same way.  Sometimes he gets confused and stops to think, but he has a good sense of direction and will always take me to the destination.

6.  Sometimes, he makes things more complicated than it needs to be.  Perhaps his knowledge interferes from what the task is at the moment.  For instance, when he was in the process of changing his clothes, he had trouble with putting on his belt.  He had his belt on his waist, but it was over his long sleeve shirt, and he had no pants on.  He probably knows that the belt has to go on his waist, but he got confused where and how to put it on.

7.  Sometimes when he cannot say what he wants, he seems to get frustrated with himself.  He will say “never mind” and that will be the end of that.  It is important to note that even though he gets frustrated for a second, it doesn't affect his mood.    

8.  Along with his memory, there seems to be something going on with him not being able to focus quickly on the object that is the target.  What I mean is that he has trouble figuring out what I am pointing at or what I am talking about.  For example, he gets confused when I tell him how to hook the water on his pants.  He seems to have trouble figuring out the “what” “where” and “how” and what the task is.

9.  He seems to understand that he is struggling from Alzheimer’s disease.  He would not be able to say he has Alzheimer’s, but he knows he has difficulties in doing things and that things have changed over the years.  For example, he told me he was able to read and write fine in the past, but one day it became too difficult or confusing to write.  Or, he would say he could play the piano, but one day it did not make sense to him, and was no longer able to play.

10.Another thing I noticed is that he thanks me a lot when he thinks I helped him out.  He would usually say “thanks for doing that” and will even thank me several times.

11.His use of language might be the thing he suffers from the most.  He cannot retrieve the words he would like to use, and thus makes conversation a challenge.  He sometimes uses different words that sound similar or sometimes words that are totally different from the words he is trying to say.  For instance, he said “books” when he was trying to say “boats”.  He said “is dad coming?” when he probably meant to say “is Michael coming?”.  He experiences a lot of tip of the tongue moments, and has difficulty getting words out of his mouth even he knows what he is trying to say.

12.Sometimes when I see him in the morning, he seems to be still in his sleeping mode.  He might be a bit slower in thinking or doing things, but will gradually wake up as time passes. 

Like I said, I am not an expert so I don't want to make any judgments or assumptions.  Having said this, I don't think there has been any noticeable changes from the first time I met Greg to now.  In other words, I don't think it is fair to say his symptoms are getting worse.  I wouldn't say he has good days and bad days, but there are certainly some things that he is capable of doing depending on the day, which makes it harder to evaluate.  He can do certain things today, that he had trouble doing the first time we met, and vice versa.   

Can You See A Pattern

Sometimes my postings are my way of getting the heaviness off my chest. Hopefully it doesn't end up on yours. I'll remind you that most of the time our days are good, full, uneventful. Getting there is often the battle. 

My guess is that if one reread my postings often or chose to analyze them, one would see the coming and going of abilities with their eventual disappearance. One would see my frustration wax and wane as I learned to cope with and to deal with these ability changes. So here is today's fun!

This morning I tried to help Gregory figure out how to put moisturizer on his face (unsuccessfully,) spent watching him struggle for 5+ minutes to put on his zippered sweatshirt before I helped (successfully,) and advised him in how to turn OFF the toaster once the toast had popped (neither successfully or unsuccessfully since a toaster doesn't need turning off once the toast has popped.)

Re Moisturizer: He can put body lotion on his hands, rub them together, and apply it to his arms, legs, etc but cannot relate that process to doing the same for applying moisturizer to his face after shaving. Recently the shaving has been irritating his face so I thought I'd try the Oil of Olay (which I use so it is a familiar object around the bathroom.) 

Gregory's approach is to put some in his hands and then rub his hands together so hard and so long that there is nothing left to put on his face. When I try to coach him through the process, he cannot spread it on both hands and apply to his face without tensing, shaking, and using only one hand at a time and therefore missing most of the necessary area.

On hold, haven't figured out this one yet!

Re Zippered Sweatshirt: It is like putting on a jacket or a shirt which he can do successfully. But for some reason when putting on the sweatshirt he has problems. He holds it up in the correct orientation then puts his hand in the wrong sleeve. He struggles for a while (since the sweatshirt is now incorrectly oriented,) takes it off and begins the process again after studying the garment closely. 

Today I watched for +/- five minutes to see if he would get it. In the past I have tried to verbally coach him (which doesn't work,) I have tried to do it for him (which is a little embarrassing for him,) and have also tried to let him figure it out for himself (which he does once in a while.)

Today I figured out a new approach to coaching him through the process. When he was holding the shirt in the correct orientation, studying the lay of the land, I gently got up saying, "Don't move!" Often he physically reacts in a way that sets the stage differently so if I was going to be able to help, he is no longer in the same position and any association to the event under scrutiny is lost.  This time he stood still. I pointed to the other sleeve hole and said, "Put your arm in here." He did. Success. "That's all it takes?" he remarked, amazed.

On hold, will see if this one works next time!

No need to discuss the toaster. Makes no sense to me but apparently makes no sense to him in a different way so when he asks, I just announce, "It goes off automatically. You don't have to do anything more." That is all it takes! 

Not on hold, easily solved.

B.P.s Report

If you have been following this blog you know that we have two college student companions spending time with Gregory when I have "stuff to do," meetings to attend, or just need time to get away from the 24/7 of Alzheimer's to play. Each companion spends 4 to 8 hours with Gregory per week.

I asked each of the companions to write about the time they have spent with Gregory up to now. I wasn't sure what I expected or wanted them to write about but I was hoping for a perspective through their eyes of the time they spend with Gregory.

B.P. is a senior at Roosevelt studying Psychology. This is reproduced with his permission. K.C.'s report will follow in a few days.

• • • • •

I am a senior student at Roosevelt University and psychology major, and I play music on the side [cello, guitar, bass guitar]. I sit with Greg about once a week, usually for four or five hours, sometimes longer.

            
Most of my days with Greg follow something of a pattern. Once Michael leaves (usually with an affectionate kiss and “I love you” to his husband), Greg and I go for a walk. He usually seems best in the mornings, perhaps half an hour after I arrive. As we walk, Greg will point out various buildings that he enjoys or disapproves with observations of “Oh what a hoot!” or “What a little shit!” While many parts of Greg’s personality and intellect may be deteriorating fast, his sense of aesthetic opinion is very strong. I often try to elicit an explanation of why he likes or dislikes something and this seems to fumble him. He can’t exactly put his finger on exactly why he feels one way or another about a building, rose, or “piece” (which can refer to a great number of different things from music to movies to sculpture). I don’t think that this artistic sense of personality is going to go anytime soon. I could certainly be wrong, and I was proven wrong before with my grandmother who also had Alzheimer’s, but I feel confident in my instinct.

            
Lately, our days have been a little simpler. In the beginning of the summer, we would go for longer walks, come back and I would very earnestly try to keep Greg very occupied. We still go on walks most days, but now they are kept short, and the rest of the day is more quiet. One day, we did nothing but go to the library, read for an hour and a half, came back and listened to music for the rest of the day. He loved it. (Telling Michael “We listened to music the whole day!” with something near glee) It seems that variety is very healthy, some elements kept consistent, but no day being completely and totally patterned.

            
Some things do seem to help every day that I am with Greg. Going to the lake always seems to calm any agitation that might be present in the beginning of the day. Watching the dogs at the park has the same effect. The rose garden also seems to help, but doesn’t seem to produce as consistent results. While variety is certainly a virtue, so is consistency. The trick is to practice both in moderation.

            
Patience is a finite virtue, and I imagine that ten years of caring for Greg have taken a serious dip into Michael’s reserves. To my mind’s eye it is here clear that I provide some substantive help for both men. For Michael, I provide a chance to escape from his duties and replenish his stores of patience. And for Greg, I provide a company that is perhaps less easily frustrated and thus, a little less demanding. 

At the same time, I am provide a different set of demands: my knowledge of their house and the layout of the general area isn’t great and so Gregory has to work to recall these pieces of information. As I gather, this process of recall can take some time, and often, Michael will get frustrated and say “Let me do it” (with equal parts love and exasperation). On the other hand I will simply wait and casually look the other way. In fact, I make it a point to do this as much as possible. I think that it is important for Greg to frequently exercise his memory. If he doesn’t, I feel the results will be like that of a man who is bedridden for several months: the muscle will deteriorate. The same will happen to his memory, and at this point, nothing new can be made anymore: no new memories are created or preserved. This is especially apparent with smaller, less significant pieces of information. 

For example, Greg once answered a phone call from Michael, and I heard him say “500 people?! Wow…” Less than five minutes later when I asked him about the call, he said that Michael had had a lot of museum visitors, but he couldn’t remember the number. The insignificant things, those that aren’t immediately important to impact Greg’s daily living get dropped by the wayside within minutes. It seems clear to me that those pieces of information that are significant enough to still be recalled must be brought up regularly.

            
A prime example of this occurred the other week. As I gather, some of Greg’s family had come to visit for a few days, and thus Michael had coordinated all of their meals, including lunch. Normally Greg has a salad for lunch most days. This seems like a very good exercise of memory to me. He has to remember where all of the necessary ingredients and utensils are and has to figure out how to put them together. On an average day, he can work this out with few hiccups, though for whatever reason he seemingly can never remember to get a fork out or even where the forks are. 

The first day that I saw Greg after this stay with his relatives, Michael suggested that we stay in for lunch, and so we did. Greg had enormous difficulty making his salad. It took a large number of suggestions from me, and my getting out the salad drawer from the refrigerator. The endeavor also took significantly longer. It is worth noting that he still did it by himself for the most part. Once again, I simply sat back and ate my own lunch and let him work things out on his own. [It is also worth noting that in the beginning of our sitting relationship that I tried to make sure that he ate or at least prepared his lunch before me. Now I realize that I need to take care of my own needs in order to be patient, and that this patience is much more important than any misguided notions of manners that I had.

            
It seems that while Greg can’t make new and lasting memories, many of the old ones are still much intact. As Michael mentioned on the first day, the memories and the words are there, it is the trigger that is difficult to find. A prime example is seen at the beginning of nearly every day that I see Greg. He can very easily find his way around the city in terms of direction (watching for cars and knowing when to not cross the street are different matters).  Occasionally, he’ll get stuck at the beginning, not entirely sure how to start, or caught up in the delusion that things have been “moved” (for instance, there is a curiously persistent notion that the lake has been moved and thus it isn’t to the east anymore) But once he actually gets going, Greg is absolutely fine. 

The same is true of unlocking the door to their apartment. As I’m sure the reader is aware from personal experience, every door is a little different, and every lock requires its own special jimmy to actually trigger the mechanism. It always takes him a moment to figure out where the necessary key is, and which one it is (even getting it into the lock sometimes presents a challenge) but once these obstacles of recall are overcome, his hands seem to simply know what to do. One day when I perhaps pushed Greg a little too far on our walk (it was quite hot that day and he doesn’t respond well to heat) he had significantly more trouble in getting the door open. But once he had a glass of water and laid down, he seemed fine. 

Things like engrams aren’t affected in nearly the same way as more typical memories. But the point remains the same: the greatest obstacle in retrieving a memory is locating the trigger and taking the first step. Once that is accomplished, feats of remembrance of far greater magnitude are possible. It seems clear to me that triggers must be regularly exercised, and this is the main thing that I try to do throughout the day (besides keeping him safe and at ease)  

            
Throughout this report, I’ve gone over the ways that I feel I help Greg and Michael. But there are certainly ways that I too benefit, and there is one small way in which I have gotten something that I did not expect. Greg seems like a very confident person. When asked about music or his career as an architect, he stresses his ability to simply do  these things. For example, when I have asked how he would approach playing music or designing a particular building he always responds the same way: “I would just sit down and it would flow out of me.” To the unfamiliar, this may seem like bragging, but in all reality, I think Greg is simply being honest, and when the sheer elegance and excellence of his work is considered, it fits. 

The reason that I bring this up is that I have never been like Greg. I am far more self-aware and anxious. I almost always feel unbearably self-conscious when I show people any creative works that I have produced. And so I feel that I too get something out of my time with Greg. One day when I had my cello over at the apartment, I mentioned my anxiety and apprehension about playing in front of others. In a very matter of fact way, he said that I sounded just fine. To me this is high praise, considering the caliber of musician that he once was. I know that he won’t sugarcoat his comments on my playing, so I don’t worry. 

In essence, I very much feel that I too am getting something out of our relationship, and on some level, I think Greg is aware of this. I think this symbiosis is a very healthy thing, as I imagine many of his day to day relationships to be rather one-sided which can certainly present frustration.

This Morning Reprise

SO FAR THIS MORNING

Up at 9:00 after a good night sleep.

Gregory shaved and remembered to put on moisturizer afterwards.

Began dressing, underwear on correctly.

Night clothes put away in correct drawer.

Instead of "sweats" followed through on prompt to get fully dressed.

After prompt remembered that we are going to meet a friend for an early lunch.

Was able to select a pair of dress jeans and a "nice" shirt on his own.

Asked which shoes he should wear and followed through.

In kitchen, took pills remembering to bring his water glass from bedroom.

Instead of a full breakfast, per prompt, had a muffin with butter which was left for him on the counter.

Asked if the door alarm was off so he could get the newspaper.

Read newspaper until time to leave.

Remembered to get a light jacket based on earlier conversation of cooler temperature outside.

One day off, one day on!

This Morning

SO FAR THIS MORNING

Up at 5:00 getting ready for the day.

Back to bed with prompt.

Up for the day at 9:00.

Begins dressing, underwear on backward.

Confused removed night T-shirt with yet to be put on undershirt.

Tried putting undershirt on over sweat outfit top.

Tried putting sweat outfit top on backwards.

In kitchen, ready to take pills, something missing. Left water in bedroom.

Toast and honey laid out at his place.

Can't tell what number on which to put toaster.

Starts toaster, toast still on table.

Looking for honey in cabinet, already on table.

Comes in to see if it would be a good time to shave. Already shaved earlier.

Breakfast

POSSIBLE TITLES FOR THIS POST:

"Enough Said ..."

"Thousand Word Pictures"

"And on Sundays Oatmeal"

"I Love To Go A Nurturing" (Sung to the tune of Fanicule Fanicula)

"What I Do For Love" (From A Chorus Line)

"Control Those Things You Can"

The Real Work

This was shared by friend and fellow writer Stephanie Kallos. Check out her books, Broken for You, and Sing Them Home. I read them and LOVED them! Stephanie Kallos's books on Amazon.com

The Real Work
by Wendell Berry

It may be that when we no longer know what to do
we have come to our real work,

and that when we no longer know which way to go
we have come to our real journey.

The mind that is not baffled is not employed.
The impeded stream is the one that sings.