"Letting Go" By: Kate Swaffer

I am reproducing my fellow blogger Kate Swaffer's post her in its entirety because it is such a significant piece. Do, however, please visit her site for her many wonderful posts.

http://kateswaffer.com (Opens in a new window)

Letting go

Kate Swaffer / 19 hours ago 

One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.

I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!

I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.

Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some time, but now, it is so impaired others have talked about it, and suggested to my husband perhaps it is time I let go of doing more things.  Of course, we have had to go through the pain together this weekend, as it had to be brought up…

I find this to be part of the process of letting go of the many things you lose with dementia, but in contrast to when you are letting go of someone you have loved, you still have your functioning and abilities in tact. When you let go of someone who has died, you still have your functioning and abilities in tact. When you lose a job, you still have your functioning and abilities in tact. When you lose friends (except when this happens after a diagnosis of dementia), you still have your functioning and abilities in tact.

If you have ever wondered why people with dementia act in ways that are hard for others to live with, manage, accept, then please think about what it is like for us, the people diagnosed with dementia, who are losing our functioning and abilities. We are changing in ways that you are not, yes, but we are also losing so much of our identity, who we once were, perhaps even who we wanted to become.The future looks grim, and our past, sometimes even this morning or yesterday, is fading, perhaps not even to become a distant memory for some of us.

Letting go is hard to do, especially when you have nothing else to hold onto… or look forward to, which is why it is so very  important to completely ignore Prescribed Disengagement™® , and Live beyond dementia™, for as long as humanly possible.

My Reply: My heart and head cry out loud for you and all others who have gone or are going or will go through this experience. Oh that I could make it all go away, be OK or be better for you, dear friend, like I tried so hard to do for Gregory. There is no way to pet you and say it is OK. It isn't! But know that LOVE does the best it can to replace those losses. LOVE by you and for you. For and from your husband, family, friends, BLOG readers, and so many others whose lives you have affected and influenced and made better!

Update

But can you tell me - I'm sorry to ask this - why does he look like he has had a stroke?

A friend asked this question and it certainly is a valid one. I am not really sure of the answer but I can dance around it.


When Gregory ended up in the hospital, close to the beginning of his time at Lieberman, the experience took a large toll on his mobility and general functioning. He fell and gashed open his head. With a knee jerk from that pain, after falling, he to hit his forehead on the bottom of the bed leaving a huge bruise.While the X-Rays showed no broken bones, I think that Gregory did some damage to his back and neck which have always been sensitive areas for him since we met some 39 years ago.

Next he had a major Grand Mal Siezure that put him into the hospital for four days. Research says, I did not know this, that approximately 28% of people with Alzheimer's begin to get seizures at the end stages of the disease.

Gregory began Dilantin to avoid future seizures and the medication took two or more weeks to balance itself, the strength of it causing him to be weak, drowsy, and basically "out of it."

On the last day of the second hospital stay he came down with the flu. It was a mild case because he had had the vaccine in October but non-the-less the effect of the medication for his H1N1 flu was like being hit by a truck.

Over the next weeks at Lieberman Gregory got stronger and stronger and felt better and better but one must be reminded that he is in the last stages of Alzheimer's. The progress of the disease over the last year, and then between Christmas and his moving to Lieberman have been exponential.

At this point, due to the above and the progression of the disease, he is not unable to walk so lives in his wheel chair. He doesn't seem to mind. He is progressing a little with Physical Therapy and over the last four days has been peddling a bicycle from his wheel chair for fifteen minutes at a time and has been walking with the help of two therapists.

Progress may be progress, but with Gregory at this stage, progress needs to be redefined. It is not the kind of progress that you or I might experience after a fall or an illness.

Part of the problem now that he is regaining strength, is that his cognition continues to decline so while he may be strong enough to walk, he no longer knows how to do so cognitively. I.E. the brain sends out the "walking signals" but he legs do not know how to "read them."

The same has happened with his fingers, hands, and arms. The strength is there at times but the signals get scrambled. Due to this disconnect between the cognition and the muscles, he has developed what are called "Intentional Tremors."

When the brain sends a signal to his hand to pick up the fork, the signal is just interpreted in a jerk of the muscles in his arm and hand. The ability to stab or cut or scoop a piece of meat with the fork, let alone get it to his mouth no longer works well.

So this is the long and short of it. He does look at times like he is "out of it" in his awareness and responsiveness. Where he is, who knows. But he does come back.

Also his coordination of muscles due to lack of use, and cognitive disconnect causes him to look like he had a stroke and most of the time his neck needs to rest on a pillow because he cannot hold it up.

So there is your relative answer. Hope this helps you see Gregory in a real light which is also a loving light that continues to bless both Gregory and me.

Love, Valor, and Compassion

I remember a long time ago when the guys were talking about "Love Valor and Compassion." Don't know if it was the play or the movie. Some of them said it was "yucky" that the male lovers were grooming each other: nose hairs, ear hair, etc. Gregory and I have always been comfortable with each other's human nature and mutual grooming, shitting in the room with the other shaving, etc. Today I lovingly thought, "If I used to fuck that ass, I might as well be content wiping it as well!"

I minorly apologize for the above if it caused offense but it is part of our reality and yes, Alzheimer's does not discriminate against same sex couples, which is also our reality! 

Was just going to share the above with a friend but then got going with itemizing the changes we are going through. Don't know why for sure, especially after the resent UPDATE, but will make an excellent e-mail and I can add it to my BLOG. Writing is my way of processing, documenting, and currently living.

Things continue to deteriorate so fast that I cannot keep up and an not sure what is the best way to proceed. I have an appointment to talk with his neurologist's social worker and honestly am continuing (with more urgency) to research memory care facilities. Last night we tried to watch Downton Abby but he got upset, couldn't tell me why, but could tell me he didn't want to watch it. 

His eating is getting harder and harder and during a meal he seems so distant or confused. Like yesterday he stirred his oatmeal for what seemed like forever and I kept having to suggest he eat some. At one point I had to show him "how to eat some." He did a little better with his pasta and meatballs but often brought an empty fork to his mouth. A new perseverative behavior is cutting his food into tiny tiny pieces before eating them.

He no longer can sit in front of a breakfast tray because the number of items is overwhelming so I serve one course at a time. Things he used to love he turns his nose up like smoked trout on a cracker. He seems to have stopped enjoying his evening coffee and cookies. Popcorn is no longer important while watching TV. Meals are no longer enjoyable times but difficult and often upset times with his tears.

He sits and stairs at his morning newspaper front page only. He paces the condo. He no longer looks at the photos each day on the perpetual architecture and the perpetual world art calendars but I continue to turn the page each night in anticipation of him doing so each morning.

A night or two ago he was up for several hours in the middle of the night worrying about something "red?" I can hardly do anything because he cannot occupy his own time and needs someone. Often he sits on the bench in the bedroom while I work at my computer.

He talks to himself. He startles easily. I'll say something to him or suggest something, he'll say "Yes, OH, OK." but continues to do what he was previously doing. This morning surprisingly enough he put on and buttoned his own shirt and jeans but now is panting and moaning from exhaustion.

He doesn't have associations with even the simplest directions: Sit down. Sit. Come eat. Pull your pants down. Come here. Stop that. Pick up your fork.

Often he is not at all present, is distant, is gone. And I sit by his side and wonder where he really is knowing there is nothing I can to to help tether him to me or to life. The other day when he was feeling what I would call the Cloud or Fog of Alzheimer's, he told me he just didn't know what was happening and that he thought he was dying. 

Last night we had a lengthy (although nonsensical but filled with urgency and emotion) conversation. Periodically from his "upset periods" with crying etc, I get the feeling that he is once again aware of who he was and what he has lost architecture-wise, piano-wise, relationship-wise, self-confidence-wise, ability-wise. He cries and shakes and looks so pained. I can only hold and rock and mutter soothing thoughts like "Everything is OK. There is nothing to worry about. I am here for you. Everything is good. Everybody loves you."

Where will the next Moment take us? Maybe I shouldn't be thinking that because that makes the moment permanent and it is already past!

Today He Cried For Joy

This morning's routine was the same for Gregory. He woke up thirsty but didn't know what to do about it. He needed reminding to sit on the toilet for a while. Then he needed reminding to shave, to have the shaver taken out of the medicine cabinet for him, to be turned on, and to be put into his hand as it was guided towards his face. He needed help with putting on his deodorant and his face cream. He needed guidance into his undershirt oriented correctly for him and his underpants as well. He slipped his arms into the correctly held for him sweat shirt and his sweat pants as well.

All this was done with love and patience and kindness without making him ask first or struggle trying first. This has always been the conundrum for me, in which if I do it all, he looses the ability more quickly but if I hold back we run the risk of frustration and fear. He has gotten to the point recently that I have just decided to do it all for him because he cannot do it for himself anymore.

After we were finished, he held me and cried into my shoulder muttering about how proud he was of himself that he was able to do it all with out help. So my doing it all for him caused the memories of his doing it all for himself to be strong and the ruler of his emotions. A strange lesson for me to learn but a good one.

Today is a ZERO Kind of Day

ZERO ability to share
ZERO ability to communicate
ZERO ability to express self (words, gestures, showing)
ZERO ability to engage in time
ZERO ability to engage in activities by self
ZERO ability to dress self
ZERO ability to undress self
ZERO ability to identify bodily function needs (hunger, thirst, elimination)
ZERO ability to identify discomforts (cold, warm, in pain)
ZERO ability to toilet self (urination, defication)
ZERO ability to eat without continued prompting (breakfast, lunch, dinner, coffee & cookies, snack)
ZERO ability to assist with household chores
ZERO tolerance to be by self

Can sit
Can stare
Can watch TV
Can thumb through newspaper (not read necessarily)
Can thumb through a book but not read it
Can listen to music
Can pet cat
Can go for a walk

Can say "I love you."

The Amazing Disappearing Undershirt

I have posted previously about Gregory's continuing difficulties with identifying underwear (sending or receiving language) let alone getting them on in the correct orientation.

This morning a new development:

"What is the purpose of this?" asked Gregory holding up the undershirt that was waiting for him on the bench in the bedroom as he was getting dressed.

"An undershirt. It goes under your shirt." I replied.

"Isn't that amazing!" he mumbled as he struggled to orient it correctly.

He got his arms through the sleeves but got hung up at that point.

Shaving

Every morning Gregory is surprised at the stubbly growth on his face. "How did this happen?" he will ask.

"Your beard grows all the time," I explain, "That is why you have to shave every mooring."

"How about that," he replies.

Going, Going, Gone

Over time I have posted lists of: Automatic, intermittent or extinct abilities. Or we could call it "always, sometimes, and never." At this point all skills and behaviors seem to be going or gone. Nothing that Gregory is able to do is automatic without thinking, like pressing the elevator button to go down or like getting a glass of water or like going into the bathroom because he needs to take a pee.

I have described how I will not rush to Gregory's aide immediately but rather let him try to figure out how to do something with which he is having difficulties. This gives him the opportunity to operate in his own time at his own rate and level of understanding. It gives me the opportunity to observe how much he is able to do.

If he does something more often than not, I do not interfere. If he can do something sometimes and not others, I do not interfere unless he really cannot get it this time. When I can tell, or when I think, he has lost the skill, I will help right away and not even ask or assume that he can succeed in the skill. At this point I do not even ask him to do it.

Well as of today:

GONE:
Recognizing need to use restroom although not incontinent.
Toileting clean up process including wiping and flushing.
Getting into shirt and pants.
Eating a normally served meal.
Helping to cook, set up, or clean up for meals.
Ability to go for a walk in the neighborhood by himself.
Taking pills and medications.
Recognizing thirst and knowing what to do about it.
Following simple, on word directions like: "Sit."
Put on coat and zipping it up.
No help with household chores.
Reading by himself for pleasure.
Recognizing that he needs to take a nap.
Cleaning up bathroom after he shaves.
Showering by himself.
Setting up toothbrush and paste.
Answering the house phone.
Using his cell phone.

COMES AND GOES:
Reading the newspaper.
Eating with knife and fork.
Buckling seat belt in car.
Opening car door.
Answering the door when someone knocks.
Opening a door.
Turning lights on and off.
Staying alone while I run down for the mail.
Taking the trash and/or recycle down the hall.

STAY TUNED FOR MORE (the nature of Alzheimer's, isn't it?)

Hurtful Words

When Gregory is having a lot of trouble with getting dressed in the morning, in my frustration I sometimes take over, fully dressing him. Most of the time I am able to do it lovingly but now and then I am mean. I tell him, "I learned how to do this when I worked in the hospital with sick and dying people."

I say it in an even voice but still, the words are hurtful (at least I think they are to him and I know for sure they are to me.) "Isn't it good that I know how to do this? Sick and dying people need lots of help. I am happy to help."

I took a close look at why I need at times to say this. Maybe I am setting myself up for Gregory's eventual death and to cope with his dying a little bit every day, every minute. You know the expression "24/7/365?" I have a new one for Alzheimer's 

"DEATH24/7/365/DEATH"

This morning Gregory came to me rubbing his face, "Something is wrong."
"You need to shave."
"No this is different."
"You need to shave," showing him the electric razor.
"Oh, you are right."

Helpless Helping

I must supervise you every time you go to the bathroom. I always tell you to use the bathroom before we go out and I suggest you use it after an hour or two has gone by at home. I visually make sure that you pull down not only your pants but also your underpants. Lately you lower yourself with great uncertainty onto the toilet seat.

I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.

I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper.  Telling you to "Flush" doesn't register and confuses the process so I do it for you.

You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."

You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.

You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.

You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.

It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.

When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.

Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.

About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.

We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if  you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.

In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."

So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.

I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.

Body Memory

The fine tuning that becomes necessary to care for a person with Alzheimer's can be tricky but also can be very helpful. At a certain point there is no use in trying to explain, teach, show, demonstrate. But "just doing it for them" doesn't always seem right either. 

The body remembers many things that the conscious mind seems to have forgotten.  These "body memories" can be used to to one's advantage. They can help someone with dementia begin or continue an activity. At meal time, for example, try handing over a fork to begin the eating process if your loved one simply sits and stares at the plate. Instead of asking, "Did you brush your teeth?" give a toothbrush with the paste already on it, while standing in front of a sink with the water running. Sometimes just getting started can be enough to enable him or her to complete the task. Having read these helpful hints got me to thinking about what else I can to to help Gregory's day run smoothly.

Many Ahh Ha's

When Gregory is trying to negotiate an activity and I try to explain, he will have an "Ahh Ha" moment. "Oh, I see!" or "OK!" or "I forgot that!"

But then the "Ahh Ha" moment is gone and he has not progressed any further with the activity.

"Get dressed now," I say pointing to his pile of clothes on the bedroom bench.

"OK," he replies starting at said pile but doing nothing.

"There," I point again, "put your clothes on."

"Oh, I see!" standing there doing nothing.

"DO IT! NOW!" I frustrate.

"I will. That is just what I was going to do." Still standing and doing nothing.

Sometimes he will eventually get it and proceed. Often he does not.

There are a number of ways that I can handle this. I put the clothes in his arms. I hand him his shirt. I sit him down and dress him with the result that he finally "gets it" and proceeds. Sometimes I just walk away and tell him, "Do what you need to do." or "Do it the way you want to."

Do you have any idea how aggravating it can be for you when someone behaves like they clearly understand what you are saying or asking and then proceeds to do nothing or something totally different from what you said or asked?

With a three year old, you know there is a learning process. How do you cope when you are involved in a disintegration of learning process? With patience and love and just a little frustration.

Milestones

Often times milestones mark achievements and celebration. I am sad to report that the milestone Gregory and I reached tonight is not cause for celebration.

We were watching a movie and I noticed that he was becoming agitated. Nothing about the movie would have caused that. I asked, "Are you OK." And he said he was not. "What's the matter?" He didn't know. I made my usual suggestion, "Do you have to go to the bathroom?"

"Maybe," he said and got up. "Where?"

"Go to the bathroom." He left the room while I took a few more seconds to stop the video. I followed him into the bedroom where he was standing holding his penis. "Pull your pants down and go sit down." He didn't know what to do so I moved him into the bathroom and as I started to help him pull down his pants, releasing his penis, he began to pee. On himself. On the floor. On me.

He was very sorry and very apologetic. I was very soothing and calm and loving. He finished peeing in the toilet and I began to clean up the floor, took his pants and slippers off, and wiped up his leg. He apologized again and I told him it was nothing to be sorry about, just that there were implications involved. "You didn't recognize the "feeling" as an urge to go to the bathroom?" I asked/stated.

"I guess so," he answered. For a while now when I sensed he was upset about something I sent him to the bathroom and he was surprised that he had to take a dump. This is the first time that urination was the culprit. Also he had waited so long that he had the "accident."

The implications are my needing to be more alert to his changing mood, might need to check every hour or so by asking and/or sending him to the bathroom, might need to begin using what I called "Protection Pants." You get the drift of my euphemism.

All I can say, is that reporting this here is helping me get through my numbness, should help you to keep up with our "progress," and is part of my continuing open and honest (if not brutal) documentation of our journey.

Honestly, I am so sad and numb and worried about the future that I don't know what to do.  Tomorrow we are/were excited about a Wagner opera: 1:40 Act 1, 30 minute intermission, 1:05 Act 2, 30 minute intermission, and 1:10 Act 3, then the drive home. There is a handicapped bathroom on the main floor (where we are sitting) so I will just have to be super alert.

Meanwhile, for tonight, maybe a short TV show in favor of abandoning the long movie and some popcorn?

A New Language

As you know, Gregory has difficulties with language retrieval as well as generation not to mention connections between words and their meanings and/or associations. When he is focused on an item, no words or pointing can distract him from that focus. So if you say "Give me the fork," often he can. But if he is looking at or thinking about a glass, you can "fork" until you are blue in the face and you'll only get "glassed!" Got it?

Meanwhile, I realized recently that we have been creating a new language that we use more successfully. When he gets undressed at night, I stand at the closet to collect his clothes to be hung up for the next day. Often he puts the item of clothing being taken off on the bed ... or on the bench ... or on the floor. When I say "Hammy" (a verbally joined together combination of "Hand it to me," he seems to understand and hands me the item of clothing.

He will take off most of his clothing but then get distracted or not realize that he still has on his underpants, undershirt, and/or sox. So I say, "Take off more" followed by "Hamme" and he takes off the next item of clothing and gives it to me. I continue this until he is standing there nude. Then I hand him his night clothes and he usually knows what to do with them.

Often he takes the night clothes into the bathroom because it is warmer in there, puts on the top or bottom, depending, and comes out of the bathroom not realizing or knowing that he still has the bottom or top, depending, to put on. I point and say "You stopped!" and he gets it.

Why does this new language work? I do not know, but I will be more aware of it and see how many new words I can add to make our life a little easier.

Theater Follow Up

RZ, in response to yesterdays post, wrote:

i think you were reading my mind, i was trying to figure out a way to suggest maybe greg can no longer go to such events, i was very attuned to both him and you and i know you want to give greg every opportunity to participate in life but it seems like its getting to be where the focus is getting smaller, i talked with MS a bit and had planned on saying something. oh michael it is just shit, im so sad and at the same time know you make his world continue to be special. much love to you both RZ

My Reply via e-mail:

Or maybe you were reading my mind:-) I think the unusualness of the swimming pool etc and maybe a "bad" day is what we were experiencing. Besides the "focus" I have never seen Gregory that tired at a performance. In traditional settings he still seems to do well enough but the Pool was definitely too much ... for him and for me to monitor. 

When we go to the Lyric or Goodman it still seems to be OK and I always make sure we sit on the aisle. That seems to help. Also when it is just the two of us and I can give all my attention to him instead of visiting with friends, it also seems to go better for him. 

I have been aware for a while that this "skill" is now in the "comes and goes" phase. What happens is that there is a period of time when he still does well enough that change is not necessary, then I begin to be more supportive, then the skill returns, then it leaves, and finally I decide that it is time to discontinue that particular activity. 

One of my gauges for future theater decisions is also "does it disturb those around us." At the pool I think it did but at other venues on other occasions it doesn't seem to. So at this point I will probably not take Gregory to theater with friends but he and I will continue to go when it is just the two of us. He enjoys the experience and the music so much that it is worth my continued efforts (again as long as it does not disturb those around us.) We are, however, certainly on the path to theatrical extinction. 

Thanks for your feedback, your support, your love. And yes ... IT IS JUST SHIT!

Since you mentioned MS, I copied him so he could be part of the conversation. Thanks to both of you.

Love ya,

m

P.S. While I was at the computer writing this, Gregory finished shaving and was getting dressed. I glanced over and saw that his underpants, undershirt, and sweatshirt were on so far ... and all three were backwards. Now I wish I hadn't intervened and waited instead to see if he would have gotten his sweatpants on backwards also. But that would have been mean :-) In the past, I have told him, "Since you get your clothes on backwards so often, why don't you just do it wrong. Then they'll be on right." He laughs. I smile (and die.)

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 :-?

Form Follows Funcion

Memory doesn't inform.

Telling doesn't inform.
Pointing doesn't inform.
Touching doesn't inform.
Showing doesn't inform.

Only doing for has for m.

A Double Header Day

Post 2 of 2 (At least so far today.)

After a lovely early morning at the Botanic Garden with our friend Jake; we dropped Jake at home, did a few errands, and finally arrived home ourselves. I was tired and possibly Gregory was over tired.

I got out of the parked car and went to the trunk to collect our belongings. I walked away from the car, as I sometimes do, as Gregory was taking a little longer than usual to get himself out of the car.

I looked back and realized he had forgotten to unfasten his seat belt and was trying (his not comprehending why the difficulty) to get out of the car.

I decided that this was an occasion for me to wait and to give him the time and space to figure out how to get himself unbelted. Things quickly got more complicated. He slipped his arm from under the belt without unfastening it and tried again to get out of the car. Next he took his gloves out of his pocket and tried again. Next his ear muffs and finally his scarf before he successfully got himself partially out of his coat while still restrained.

By now he had twisted himself so badly that I am not sure he would ever have gotten out by himself but I decided I needed to wait until he realized the trouble he was in and asked for my help. I stood by patiently with a gentle look on my face but he didn't notice, or look at me or even realize even, I believe, that I was standing there ready to help.

He didn't panic or get overly frustrated so I held my ground, waiting. Finally he looked up and registered that I was there. "I'm working on it." he said.

"I will be happy to help" I replied, "just ask ... 'Michael I need some help.'"

"I need some help," came the echo. So I put the parcels I was holding on the hood and proceeded to help him. He was so badly wrapped up in belt, scarf, coat, etc that it took me a while to get him unwrapped. And I had to force his body uncomfortably through this line and over that line and around the other. He was a little panicked by now and fought me a little. I had to calm him down and proceed.

By the time we were done, it felt like I almost had to tip him on his head while he was hanging out the car door but finally WE were free from restraint.

"You forgot to unfasten the belt before you got out," I by force of habit said. And due to his disability, I am sure my comment made no difference to him. We proceeded up the stairs to the condo. He had a drink of water and took a nap as did I.

Another lovely day on a lovely outing.

S-POPS

This has been going on for a while but seems here to stay so I thought I would post about it. Gregory has developed the Sandwich Perception and Orientation Problems Syndrome. If I were a doctor I could coin the name S-POPS and become famous. The symptoms present themselves in Gregory's being unable to orient a sandwich correctly to efficiently get it into his mouth for a bite.

Imagine eating a hot dog. One tips one's head left or right while holding the hot dog parallel to the plate and bites from one end towards the other end. Thus the mustard and especially the onions and pickle relish stay on the dog during the biting process.

Next picture a cheese berger. The round bun, containing the beef and condiments, can be held at 90 degrees to the plate as the bites take place and chances are the bun will hold the contents in place.

Both above scenarios present only minor problems if one is seated at a table and can hold the said sandwich over a plate. If items fall off onto the plate, they can be picked up with your fingers (even though the fork is sitting at the right of the plate) and consumed without much problem.

More perplexing is when the long, cylindrical hot dog type sandwich or the round burger type sandwich (or for that matter the square Wonder Bread type sandwich) are aimed toward the mouth at an impossible angle for not only 1) condiment maintenance but also for 2) basic biting.

The biggest problem by far comes when trying to eat a sandwich in the car. Sometimes the wrapper snuggled around the bottom of the burger like a diaper on a baby's bottom will help, but not always especially if the angle of sandwich presentation is plus/minus the required parallel or 90 degree angle.

Possible solutions: Do not eat in the car. Wear a bib. Don't notice the difficulty and drive bravely forward.