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.

The Shoemaker's Elf

Sometimes I feel like the Shoemaker's Elves. When I see things Gregory has left  lying around in unexpected paces, I secretly put them back where they belong so he can find them in the morning.

The Elves and the Shoemaker

There was once a shoemaker, who worked very hard and was very honest: but still he could not earn enough to live upon; and at last all he had in the world was gone, save just leather enough to make 

one pair of shoes.

Then he cut his leather out, all ready to make up the next day, meaning to rise early in the morning to his work. His conscience was clear and his heart light amidst all his troubles; so he went peaceably to bed, left all his cares to Heaven, and soon fell asleep. In the morning after he had said his prayers, he sat himself down to his work; when, to his great wonder, there stood the shoes all ready made, upon the table. The good man knew not what to say or think at such an odd thing happening. He looked at the workmanship; there was not one false stitch in the whole job; all was so neat and true, that it was quite a masterpiece.

The same day a customer came in, and the shoes suited him so well that he willingly paid a price higher than usual for them; and the poor shoemaker, with the money, bought leather enough to make two pairs more. In the evening he cut out the work, and went to bed early, that he might get up and begin betimes next day; but he was saved all the trouble, for when he got up in the morning the work was done ready to his hand. Soon in came buyers, who paid him handsomely for his goods, so that he bought leather enough for four pair more. He cut out the work again overnight and found it done in the morning, as before; and so it went on for some time: what was got ready in the evening was always done by daybreak, and the good man soon became thriving and well off again.

One evening, about Christmas-time, as he and his wife were sitting over the fire chatting together, he said to her, ’I should like to sit up and watch tonight, that we may see who it is that comes and does my work for me.’ The wife liked the thought; so they left a light burning, and hid themselves in a corner of the room, behind a curtain that was hung up there, and watched what would happen.

As soon as it was midnight, there came in two little naked dwarfs; and they sat themselves upon the shoemaker’s bench, took up all the work that was cut out, and began to ply with their little fingers, stitching and rapping and tapping away at such a rate, that the shoemaker was all wonder, and could not take his eyes off them. And on they went, till the job was quite done, and the shoes stood ready for use upon the table. This was long before daybreak; and then they bustled away as quick as lightning.

The next day the wife said to the shoemaker. ’These little wights have made us rich, and we ought to be thankful to them, and do them a good turn if we can. I am quite sorry to see them run about as they do; and indeed it is not very decent, for they have nothing upon their backs to keep off the cold. I’ll tell you what, I will make each of them a shirt, and a coat and waistcoat, and a pair of pantaloons into the bargain; and do you make each of them a little pair of shoes.’

The thought pleased the good cobbler very much; and one evening, when all the things were ready, they laid them on the table, instead of the work that they used to cut out, and then went and hid themselves, to watch what the little elves would do.

About midnight in they came, dancing and skipping, hopped round the room, and then went to sit down to their work as usual; but when they saw the clothes lying for them, they laughed and chuckled, and seemed mightily delighted.

Then they dressed themselves in the twinkling of an eye, and danced and capered and sprang about, as merry as could be; till at last they danced out at the door, and away over the green.

The good couple saw them no more; but everything went well with them from that time forward, as long as they lived.

The Good, The Bad, The Ugly

Hi. Me again. Sometimes I hate burdening my BLOG with CRAZY EVENTS but since I have no one to talk to, you are it BLOG. So thanks for listening.

GOOD:
Just went to Whole Foods for one thing, Buttermilk for making "Helen's Refrigerator Bran Muffins." Came home with two bottles of Sangria to try, lunch meat, some chocolate for Gregory, and steak, corn, cucumbers, and fresh mozzarella for tomorrow's dinner. I.E. came home with everything but the Buttermilk. We both got a good laugh out of this.

BAD:
I made Oatmeal Raisin Walnut cookies today. Six dozen cookies now piled high and sitting on the cooling rack on the kitchen counter. I decided to start making cookies for Gregory because his five o'clock coffee and cookies is so important to him and I felt that home made cookies would be a nice addition. My emotions aside, this is what took place.

"Time for your coffee and some home made cookies."

"Oh is it?"

"Yes."

Gregory proceeded, in his ritualistic way, to open the cookie shelf and to begin selecting some to have with his coffee. I stopped him and pointed out, again, the home made oatmeal cookies that were on the counter waiting for him. Next, without getting any coffee, he took his previously selected cookies, sat down on the purple chair, and ate them.

I mentioned that he had not yet gotten his coffee and that I made (pointing) Oatmeal Raisin cookies for him to have with his coffee. I left the room. He poured his coffee, added milk, warmed it in the microwave. Took his coffee to his desk and sat down to drink it. Still no Home Made Oatmeal Raisin Walnut Cookies. My emotions aside.

UGLY:
It was all I could do to overcome my "Agita" and continue in my move towards doing EVERYTHING for him, ASSUMING NOTHING, and PRETENDING that everything is OK when it is NOT!

I took a breath and in my calmest possible voice asked him to come over to the counter. I showed him the cookies and asked if he knew what they were? "Yes." And what are they called? "Them." (A statement, not a question.) Yes, cookies. And what are they for? "To eat." Yes, so take a few to have with your coffee. "OK." Do it now. SILENCE, INERTIA. Take some now. "OK." I stood there to make sure and he took three cookies and went over to sit down with his coffee. Then I went back to my computer. My emotions aside.

He just came into the bedroom and said, "They are my favorite." I thanked him ... but what can I say. Where am I supposed to put my emotions, my inability to fathom what he is going through, my fear at what I have to do next, my not wanting to treat him like an invalid, the ability to treat him like a satient human being? I am not ready to do absolutely everything for him to avoid the risk of his and/or my frustration (my anger!) Sometimes our interactions are so convoluted that I am not sure what has happened.

He just came into the computer room again and said, "Thanks for out there." You are welcome.

So where do I go? What do I do? How do I get through this? Guess what - There are no answers and even the questions don't work anymore. Getting through it means surviving until the next interaction and sometimes over night. My emotions are not aside. They are slowly killing me.

The Case of the Confused Underwear

Last night Gregory laid out his morning sport pants and shirt but forgot about the underwear. I reminded him but my language (undershirt/underpants) did not help so I told him we would take care of it in the morning. I knew I would be in for a "fun filled" morning but I was too tired to manage the underwear right then.

Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?

Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.

He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."

Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.

With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.

Se La Vie & Bienvenido

Se La Vie & Bienvenido
(This is the life (in French) and welcome to it (in Spanish.)

Last night, just before bedtime,
as we were having a Cheerios snack,
Gregory had the jug of milk in one hand,
his cereal bowl on the counter, and
he was stumped about what to do next.

This morning, making his breakfast,
as I was making my coffee,
Gregory had the electric tea pot in one hand,
his tea mug in the other, and
he was stumped about what to do next.

Our life,
many times a day, hour, or minute,
Gregory on the one hand,
me on the other, and
we are often stumped about what to do next.

Iron Lady Continued

Chatted with G after dinner about "The Iron Lady" but not really sure he realized until I mentioned it that Margaret Thatcher has Alzheimer's Disease. The movie, however, really affected him. (I think the movie and Ms. Streep did a really good job of portraying what it is like to live with the BIG A.)

In the past (B.A. = Before Alzheimer's) when he got really involved in a "heavy" movie he would be distracted and "lost in it" for a while after (hours at least.) This time his distraction via Alzheimer's showed up during dinner when he didn't know how to cut the peach in his peaches and cottage cheese, started to pull it apart with his fingers, so I cut up his food for him. He was quite confused between his knife and spoon, when he did figure out that the knife was to spread jam on his English muffin he did not really understand the principal of how a knife carries the jam and spreads it.

After his muffin was gone, he loaded up his knife with more jam, "Where am I supposed to put this?" he asked. "Back in the jar," I replied, "you have no more muffin to put it on."

He was aware of how confused he was and (in his few-ly worded way) recognized "How I am after a movie."

Beep Beep Beep

Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.

Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.

I must be more careful to "signal when backing," BEEP BEEP BEEP.

Still I behave...

Still I behave as though Gregory does not have Alzheimer's. I get angry when he gets dumb. I take offense. I refuse to believe. I am rude and disrespectful. Maybe today I will change.

Today he wasn't able to "Please get me a kitchen towel from the guests bathroom." He confused the difference between "Yuck" garbage and "Recyle" garbage again. He tried to grab the hot cookie pan thinking he was helping. Couldn't look at a Lego block pattern, find the piece, and put it in place. Uses "him" when he means "her." Uses his hands more and more to facilitate his knife and fork. He forgot the steps involved in drying the dishes. Etc, etc, etc.

I did two things correctly today.

When he couldn't do the Lego blocks, I sat down next him and did them myself talking through each step. Later he said he had fun helping with the Legos.

We made Gregory's Great Grandma Barbara's Christmas Cookies this afternoon. He  "remembered" them a week or so ago (talking around them until I was able to guess what he was talking about) and asked if we couldn't make them this year.

I bought the ingredients, laid out the cookie trays. I read the recipe and figured out the directions. I measured. I boiled. I sifted. I added ingredients. He mixed the dough. I formed the cookie balls. I pressed them with a glass. I put them in the oven. I timed them. I took them out and let them cool. I put them on the cooling rack. I piled the cool cookies on one tray. I put them in sealed container with sliced apples to cure until Christmas. I cleaned up after. He dried the clean items (after I talked him through how to dry.) WE had a fun time. I am tired. He is happy.

Apple Pie

An old old story between Gregory and myself is about going into a diner and asking the waitress what kind of pie they had. She replied, "Yes."

A variation on this story is, "What kind of pie would you like Cherry? or Apple?" with a reply of "Yes."

Yesterday in the bathroom, I told Gregory that he should move his pills closer to his sink  so he didn't forget to take them. He replied, "OK." and left the room.

Past the Puzzle Plateau

In a recent e-mail to our niece and nephew:

G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"

I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.

In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.

He just seemed to gain some insight into the process and seems to be making some progress.

Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.

m

A New Observation

THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)

THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?

THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.

THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."

THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.

THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.

FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself  up for trying.

Bears and Foxes and Lions, Oh My!

This first part was previously posted on my writer's blog.

When I first started visiting Green Bay Animal Hospital, the two veterinarians who staffed the clinic were Dr. Bear and Dr. Fox. Several years later Dr. Fox went on to open his own clinic and I followed with Hoover and Mariah, our cats. Today I took Mariah in for some bladder infection problems. Dr. Fox was not in and to my surprise, the doctor on duty was Dr. Lions. I love telling people that a bear, a fox, and now a lion take care of our pets.

I am reposting it here because the story takes an interesting turn. I explained to Dr. Lions that Mariah (our cat) has become "cranky" recently and that I have been keeping an eye on this looking at possible bladder infection, or developing arthritis in her hind legs which would also explain her change in toiling habits, namely peeing on the floor around the box and most recently on the bathroom rug.

Dr. Lions explained that this loud crying and "crankiness" could be part of what vets call "Old Age Complaining." Cats with aches and pains, confusion, cognitive changes will just complain. I commented, "Funny. Just what I need is more cognitive changes. About eight years ago, my life partner was diagnosed with young onset Alzheimer's Disease."

She explained that there actually has been some research done on aging cats that shows that there is an Alzheimer's like pathology that can develop.

Bring on the Aricept and Namenda ... or maybe just the antibiotics.

I Have Lost Myself

SPOILER: HEAVY READING AHEAD...

In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,

"What is your name?“

"Auguste.“

"Family name?“

"Auguste.“

"What is your husband's name?“ - she hesitates, finally answers:

"I believe ... Auguste.“

"Your husband?“

"Oh, so!“

"How old are you?“

"Fifty-one.“

"Where do you live?“

"Oh, you have been to our place“

"Are you married?“

"Oh, I am so confused.“

"Where are you right now?“

"Here and everywhere, here and now, you must not think badly of me.“

"Where are you at the moment?“

"This is where I will live.“

"Where is your bed?“

"Where should it be?“

Around midday, Frau Auguste D. ate pork and cauliflower.

"What are you eating?“

"Spinach.“ (She was chewing meat.)

"What are you eating now?“

"First I eat potatoes and then horseradish.“

"Write a '5'."

She writes: "A woman"

"Write an '8'."

She writes: "Auguste" (While she is writing she again says, "It's like I have lost myself.")

Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and 'whininess'. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, "Oh, God!", and, "I seem to have lost myself". She seemed to be consciously aware of her helplessness. Alzheimer called it the "Disease of Forgetfulness".

CUE THE TEARS ...

Skip a Beat

Gregory and I were sitting out on the balcony after lunch. It was quiet and peaceful. Just below is the roof top garden and terrace. Flowers, trees, bushes, grass, and lawn furniture. No one was using the garden or terrace just then and it was pleasant to consider it our own.

I comment, "I am glad that there isn't an outdoor pool down there with people screaming and splashing about right under our window."

"Yes," Gregory replies, "And Chuck and John's."

Naturally, the conversation confuses me. So I ask for clarification, "Chuck and John don't have a pool?"

"I know, but I miss visiting with them."

I just sat there bewildered for a moment. I am beginning to think "Foolish Me," I should have just smiled and nodded.

Gregory asks, "Are you OK?"

"Yes, it is just that you need to skip a beat before you go on to the next subject. It confuses me."

Euphemistic But True

euphemism |ˈyoōfəˌmizəm|nouna mild or indirect word or expression substituted for one considered to be too harsh or blunt when referring to something unpleasant or embarrassing.
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?" 
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"

Balance

I cannot get the balance
For this round
Of when to think for him
Or when to let him think
His own thoughts.

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

Tonight

Tonight he forgot how to put body lotion onto his hand. It hovered above the pump, retreated, approached, retreated, approached. Finally he figured it out.

After reading for awhile, he put his book down on the night table, picked up the case for his reading glasses, opened it, closed it, then realized he still had his reading glasses in his hand. He corrected the situation in silence. Unnoticed I watched.

He fluffed his pillow, laid down, said goodnight to the plants on the bookcase, and turned off the lamp. Some solace in that I guess.

When Teaching and Learning No Longer Work

What happens when teaching and learning no longer work? Think about that one!

Half Full or Half Empty

Is the glass half full or half empty? At dinner, I usually drink two glasses of water and Gregory usually doesn't drink any of his. The usual routine is that I hand him my empty glass and he gets me a refill from the water tap in the refrigerator. Sometimes he asks if I want more ice.

This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.

First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.

"No, mine is the empty one."

"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.

Now you tell me, half full or half empty?