The Meeting

On Monday November 30, 2015 I presented a workshop to share my observations and suggestions for improvement on the Alzheimer's Special Care Unit at the Lieberman Center for Health and Rehabilitation.

All of the department heads, managers, and key players were invited for a luncheon from 11:30 - 1:00 which was catered by Max's deli. I figured it was the least I could do to appreciate these people for spending time with me.

I prepared a folder for each participant which contained a number of informative handouts on Dementia/Alzheimers: Biomedical and Experiential Models of Dementia, 12 top tips in working with people with dementia, Speaking Dementia (which offers tips on working as well,) and Dementia Language Guidelines (which offers correct language use when talking to or about people with dementia.)

The following is a transcript of the complete presentation: 

BACKGROUND

My purpose for today’s get together is to share my observations and possible ideas to help the Lieberman Center for Health and Rehabilitation’s Alzheimer’s Special Care Unit be the best it can be and possibly become a model for others to follow.

I am a very observant person. I consider that to be a blessing AND a course. Besides being observant, I believe that I am able to see the many sides to any situation.

When I was a young man working for the State of Illinois Department of Mental Health, I worked on a behavior modification unit where young adults in trouble with the law were sent by the courts for rehabilitation. One of the responsibilities for which I was trained was to be an “Independent Observer.” Write down what you see, make no judgements, assign no value.

As an elementary school teacher of over 30 years, I became intensely aware of classroom environment, social milieu, planning and strategy. I worked with children diagnosed with Autism, pre-schoolers and teenagers with developmental disabilities, directed a day camp, taught regular fourth and fifth grades, and taught Junior High Spanish. As an administrator for the Glenview Schools Gifted Education program for seventeen years, I worked as a consultant to teachers, an advisor to other administrators, an advocate for parents, and an educator of children. 

DISCLAIMERS

While I believe that my background has enabled me to prepare for this meeting, I must make a few disclaimers.

In no way do I believe that I have “all the answers.” In no way do I pretend to be as knowledgeable in the area of resident care as each of you are in your individual fields. I know that I can not begin to understand all of the complexities and ramifications of running a facility like Lieberman. 

My observations and suggestions for improvement are based on 18 months of engagement with staff, CNAs, residents, other families, and with my life partner Gregory. They do not necessarily reflect what goes on with other care floors in the building or what may currently be in place since Gregory died two months ago.

I am grateful for Manny Kagatan, Gregory’s private-pay care-worker, who provided for Gregory many of the suggested improvements mentioned here.

I apologize in advance if I offend anyone, am incorrect in my observations, or am naive in my understanding of the immense task with which you all are entrusted. I hope that you do not feel the need to explain, defend, or apologize, but rather if any of my observations or suggestions can create the beginning of new conversations about the Alzheimer’s Special Care Unit EXPERIENCE, then my purpose is served!

I am honored to be able to share my ideas with you!

IDEAL SITUATION BELIEFS - Unit

In the idea, the fifth floor Alzheimer’s Special Care Unit is a place where the atmosphere is pleasant, friendly, and warm most all of the time. It is a place where residents can enjoy safe surroundings, have their medical needs met, feel part of a community, and have their social/emotions needs met as well. It is a place where residents, as much as possible, do not feel alone, or isolated, or bored.

If the fifth floor is to truly be a Alzheimer’s SPECIAL Care Facility, it needs to be special, different from how the other floors are run, organized, staffed, maintained, etc. It needs to look and feel and behave differently.

Higher Standards:

The care given on the unit must attempt to raise above state rules and regulations, insurance restrictions, bottom line budget decisions, lack of time for proper planning and implementation, and other limitations.

Home vs Hospital Model:

The Alzheimer’s Special Care Unit should attempt to follow more of a “home” model of care than a “hospital” model of care, when ever possible, in which residents do not feel isolated, alone, bored, angry … but rather feel a sense of home, of camaraderie, of community and maybe even joy!

Experiential vs Biomedical Model:

The unit should attempt to follow more of an “experiential” model than a “biomedical” model of care, whenever possible, in which residents needs are met in individualized, meaningful, diverse, loving ways with Lieberman’s continued minimal use of drugs and medications to control, damper, or suppress behaviors.

Summary:

I see the need to re-think programming for the unit in six areas: 1) staff scheduling, training, and communication; 2) meeting resident social and emotional needs; 3) meeting resident dining needs; 4) activity planning, presentation, and delivery; 5) unit space design, utilization, and furnishing; and 6) volunteer use.

IDEAL SITUATION BELIEFS - Staff

Nursing Staff:

The nurse director and floor nurses provide excellent health care in the anticipation and meeting of resident needs, even when residents cannot communicate for themselves. Regular assignments of nurses, minimal use of floating nurses, would benefit residents. In addition to delivering medications, more attention during dining time to feeding, conversation, supporting, and offering choices should be the rule.

The support from Lieberman’s Director of Nursing, Assistant Directors of Nursing, and Restorative Nurses offer excellent support to the overall operation of the Fifth Floor.

Social Work Staff:

The social worker provides excellent support to family members and to residents, although I believe that the ratio of 1:48 is a little too high for our specialized population. Social work and grieving support is needed for staff as well.

The Lieberman Social Worker Director provides excellent support to the overall operation of the Fifth Floor.

Milieu Manager Role:

I have imagined the new role of Milieu Manger. This person would work closely with the Nurse Director and the Social Worker, would have extensive training and background in Dementia/Alzheimer’s care, and would be responsible for overall oversight of the daily functioning of the unit in non-health and non-social work areas.

She would help create and oversee a friendly, engaging therapeutic environment for residents based on best practices research. She would oversee lunch and dinner time, and would provide supervision for CNAs and floor nurses during her modified PM shift from 12 until 8 pm, at which time most residents are moving towards bedtime. 

She would also be responsible for making sure CNA supplies were stocked in the main storage area and in each wing. She would be available for support, in a hands on way, anytime it was needed.

Staff Training:

More attention would be given to all staff training in the area of Dementia and Alzheimer’s. The training would be intensive and exceed usual expectations. A plan would be instituted to quickly and efficiently bring new employees up to date.

IDEAL SITUATION BELIEFS -  CNAs

A plan would be in place which includes special, extensive, detailed Dementia/Alzheimer’s training and would include instructions for proper handling of residents who cannot move themselves, make sure resident clothing is neatly arranged and comfortable, ensuring proper posture and seating in wheel chairs with placement of pillows if appropriate. 

The plan would include detailed procedures for sanitary care and cleaning of residents after soiling, appropriate verbal interaction with residents, appropriate disruptive behavior support, detailed eating support for residents, and more.

Currently, fifth floor CNAs, who work very hard, spend most of their time moving residents from place to place, meeting resident physical needs, delivering food, assisting those who need feeding support at mealtimes, and supporting floating or new CNAs who are unfamiliar with residents and the needs of the floor. 

CNAs have very little time to socialize or interact with residents, to engage residents in activities, or to support activities presented by the activity therapist. When the unit is fully staffed by regular fifth floor CNAs, it runs more smoothly. When the unit is supported by floating CNAs, the job is not as well done and the environment suffers.

More informative two-way communication, from managers, should be available to all CNAs, including a daily report by the nurse manager at shift change as well as better communication with new staff or “floaters.”

The number of CNAs on the floor should be increased to 8 for the day shift and 8 for the PM shift. This would allow four teams with two CNAs per team to be assigned to each of the four wings. Currently, many if not most of the residents on the fifth floor need more than one CNA to assist with toileting, cleaning up after soiling, and bathing. Instead of spending time finding another CNA who is free to help, the teams would work together more efficiently.

Residents would be assigned to a team based on which wing they lived in. If “personality differences” arose, there would be two CNAs on the wing with whom a resident could interact.

This increase in staffing would allow for better wing supervision, more efficient and meaningful mealtimes, opportunities for more appropriate activities (discussed later,) more conversational and interactive time with residents, and overall better care of the residents physical, social and emotional needs not to mention safety. Also, regular CNAs would be better able to support the fewer, hopefully, floating CNAs which were needed on the unit.

With two CNAs at a time supervising wing time, residents needs would be better met and safety no longer an issue.

IDEAL SITUATION BELIEFS - Mealtime

All food departments at Lieberman contribute to the well being of the fifth floor residents; including Dietitians, Nutritionists, Kitchen Managers, Chefs, kitchen workers, and food servers on the floor. 

There is usually plenty of delicious food with seconds available to residents. Regular, mechanical, and pureed selections are always tasty. Food for those on regular diets is cut into bite size pieces. Alternatives at times are available when residents do not like a particular selection.

All fifth floor staff would be trained to assist and would participate in meal time duties including CNAs, activity therapists, social worker, nurses, Nurse Manager, and Mileiu Manager.

All breaks and meals for staff would be scheduled during non-meal times to allow for a better experience for residents. A better eye would be kept for when residents need seconds on food, alternate selections, or beverages refilled.

With everyone helping deliver food and helping residents who need help with eating, long waits during mealtimes become unnecessary. Also, residents would experience more meaningful interactions while eating, as well as not feeling rushed.

IDEAL SITUATION BELIEFS - Social/Emotional

Besides health care, more attention needs to be given to the social and emotional well being of residents. They should be regarded in ways that engage and support who they are as people, not only who they are as patients.

Depending on the minute, hour, day, week, and month; the unit’s functioning can vary from smooth to chaotic! When residents are upset, angry, screaming, arguing, trying to get out of their wheel chairs, etc, not only is the social/emotional environment difficult but also safety issues arise. A contingency plan needs to be in place to help handle “more difficult” days on the unit.

IDEAL SITUATION BELIEFS - Environment

Housekeeping does an excellent job of keeping the unit clean. Environment is a very important factor and includes cleanliness, visual attractiveness, comfortable furniture, lack of odors, calmness, and comfortable spaces for small group and large groups. The laundry department keeps clothes washed and returned promptly.  

New furniture is on the list when renovations are done on the other floors. This is most needed. New bins for trash and waste should obtained which can be sealed to keep odors in. The current ones, even though newer, do not serve this purpose. Rather than replace these, perhaps the current bins could be changed more often. 

Periodically building custodians would touch up painted walls and doors so most of the time the unit would look clean and in order. Rooms would be cleaner, especially in the corners. Beds, dressers, and other room furniture would periodically be wiped down and disinfected.

IDEAL SITUATION BELIEFS - Activities

The Activity Therapist works hard to provide residents with meaningful activities. The Lieberman Life Enrichment Manager supports her work and provides an overall building approach to activities as do the other building activity people and art therapist, who work periodically on five.

It would be good if there were two, full time Activity Therapists on the fifth floor. Small and large group wing supervision and activities, with engagement supported by CNAs, would take place more often and in more than one area. The activities would run throughout the day and early PM shifts and would include weekends as well.

At times, residents would be divided according to abilities, interests, and needs. If a resident’s ability changes or could go either way; activity levels would be re-evaluated.

Activities would include folding laundry, art, music appreciation, singing, cooking, exercise, dance, clay modeling, sensory units, reading aloud, exploring photographs of famous people or places, aroma therapy, parachute games, fish tank discussions, current event discussions, using headphones and a iPod to play music tailored to the resident’s likes, or just having a back massaged and being touched. Other activities could be created. Off campus field trips are scheduled for those who are able to attend them.

Watching appropriate television programing, a musical or old time video on DVD, nature scenes backed by classical music, etc are done on TVs that are large enough for everyone to see, with sound that is turned loud enough for everyone to hear, and in a room or two rooms if the group is divided that are large enough for everyone to have a “good seat.“ TV programs that portray violence or crime and news programs would never be shown.

Physical and Occupational Therapists provide overall support to fifth floor residents in their space on the second floor. They would also be seen on five working with residents and periodically looking for ways to support staff with their expertise. Group activities at times would be facilitated by the therapists.

A “day room” somehow needs to be provided. One which is large enough so that most residents can attend functions and be comfortable while participating in activities. It should be well furnished, equipped, and provisioned to provide for art, music, discussion, exercise, cooking, movies, TV, and other activities.

If a space like this cannot be created, then perhaps dining room use might be re-thought. Smaller tables on wheels can be set up ahead of time by kitchen staff and moved into a corner of the dining room to make space for activities. Then at meal time, the tables would be rolled back where they belong, and with wheels lowered, would sit securely and safely in place. 

With activities in the dining room just before or just after meals, less time would be spent moving residents from place to place. A larger than life TV screen, mounted on the wall, would allow for theater like experiences with most of the residents being able to be in the room and to have a good seat.

IDEAL SITUATION BELIEFS - Volunteers

The Volunteer Manager would continue to do her good job of vetting and training individual volunteers who would work independently with residents.  She would supervise groups of less or untrained volunteers during activities. Supervised children would spend time with residents in a “Grandparent Program” and school groups would put on performances.

Volunteers would also assist with transportation within the unit and with bringing residents to the first floor for building activities, ice cream and hot chocolate in the Nosh, or just outside during good weather, for some fresh air.

Volunteers would include adults, organizations, children, school groups, family members, and pets. Language specific volunteers would support and engage residents who do not speak English.

IDEAL BELIEFS SITUATION SUMMARY - Excellent

• Health care and nursing on 5
• Staff are well meaning, caring people
• Staff works very, very hard to meet resident needs
• Meals are hot, delicious, ample, and meet resident abilities to eat
• Environment is clean, sanitary, and safe

IDEAL BELIEFS SITUATION SUMMARY - Need Attention

• Staffing of regular CNAs vs “Floaters”
• Staff communications and training needs attention
• Meeting social, emotional, and behavioral issues
• Mealtime experience needs
• Space use, availability, and furnishing
• Activities

IDEAL SITUATION BELIEFS - In Conclusion

My hopes and purpose today has been that this fantasy story will give you a different picture or a new way of looking at what the Special Memory Care Unit at Lieberman could be.

Like releasing balloons, wherever they may land, perhaps the observations which helped create this story, will help begin the process of discussing what a total milieu on the fifth floor should and could look like. 

Sometimes status quo is the rule when time and energy, adherence to state mandates, insurance regulations, and budgetary constraints do not allow for studying, planning, and making effective, needed change. I ask you to continue your fine, loving work with those in your charge and to look at making that work even better.

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.   

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.