The Sparrow

Republishing this. Received this from my friend Roy whose sister lived with and recently died of Alzheimer's. The message in the video he sent was a poignant one. It is included here with the text. 

The Sparrow

Father: "What is that?"

Son: "A Sparrow"

Father: "What is that?"

Son: "I just told you, It's a a sparrow"

Father: "What is that?"

Son. Agitated: "A sparrow father. S   p   a   r   r   o   w"

Father: "What is that?"

Son with anger: "Why are you doing this?  I told you so many times, it's a sparrow. Don't you get it?"

Father gets up. 


Son: "Where are you going?"

Father signals with his hand "Wait a minute," goes into house, and returns with a book which he hands to the son. It is apparently a diary from the father's earlier days. The son looks at the book.

Dad: "Read ... aloud."

Son: "Today my youngest son who a few days ago turned three was sitting with me at the park when a sparrow sat in front of us. My son asked 21 times what it was and I answered 21 times that it was ... a sparrow. I hugged him every time he asked me the same question. Again and again ... without getting mad ... feeling affection for my little boy."


The son looks thoughtful for a moment, puts his arm around his father, pulls him in with a hug and kisses his head ...

Helped me. Hope it helps you.

Connections

These moments are precious.
They will be remembered forever.
He looked into my eyes.
He smiled.
He said, "I love you."
I melted and said, "I love you too."

This was yesterday. Coming from somewhere deep within Gregory and bubbling forth to let me know that he is still with me. Somehow his body and his spirit connected and the best of him shined forth and our love reached new heights. I love that man "More Than Ever!"

To Paint or Not To Paint

That is the question. Katharine, Gregory, and I have tried painting in art therapy for approximately five sessions. Some were a little more successful than others but for the most part Gregory's engagement rate has been minimal.

When he did go through the motions of finger painting he did not focus on the difference his hands and fingers were making in creating patterns of the color on the paper. There is a disconnect between what his hand do and what his eyes see.

We have tried the finger paint with different types of plastic gloves on a piece of paper taped to a tray. Today we tried an easel with crayons. We also tried Cray-Pas oil pastels and markers.

Gregory goes into a "I need to disappear now" shutdown, the nature of which I do not fully understand. When he cannot function, or possibly cannot piece together the necessary skills, he closes his eyes, bows his head, and sometimes leans forward.

When asked, "Are you sleeping?" he opens his eyes and said, "No." But when we try to re-engage him in painting he "shuts down" again. We tried moving his hands and arms through the motions. Not successful.

We sat quietly and waited for three for four or five minutes to see if he would respond to the Cray-Pas stick in his hand. Not successful. Katharine tried to position a marker in his hand like one would hold a pen and while he was able to do so, it lasted only for seconds.

Every now and then his fingers or hand would make a slight movement, or spasm. Perhaps the muscle memory cues that his brain was sending got through but only for a brief second.

Kathleen tried a drum filled with steel beads that makes a rattling noise. Gregory opened his eyes to study where the noise was coming from but then shut down.

Next I noticed that he placed his hands in a "playing piano" position with the drum so we got a xylophone off the shelf to see if Gregory could use the padded sticks to at least make some musical noise. Not successful.

So it looks like our nobel experiment was well worth the time but not the results and perhaps only served to frustrate Gregory. We will probably discontinue "painting" but I have to think about the possibility of putting him in front of a piano (or possibly an electronic keyboard which would be easier to play) and see if he would at least make some musical noise. I hesitate if only because I do not want to open unwanted doors to unnecessary emotions.

One Word at a Time

My vow of silence lasted one and one half days. It was terminated sooner than I had hoped but did serve the purpose of calming me down. Also, as Gregory regained his health, his daily functioning improved somewhat. Another lesson learned for the future.

Then I got the same flu he had (not a bad) and was forced to take care of myself a little more than taking care of him. I did get him to sit on the toilet every two hours (with success) and prepared his meals. I was forced to "calm down" even more by my being ill.

After the first day of silence, I decided that perhaps a next step would be ONE WORD AT A TIME. Since complex directions, statements, or questions confuse him, maybe one word communications would help. It didn't.

As he was leaving the bathroom and I was in bed not feeling well, I said, "Light." meaning please turn off the bathroom light. He was not able to connect the word "Light" with the room he was in. So I added, "Bathroom." Still no connection. Led to "Bathroom light." Still no connection with asking him to turn off the light as he was leaving the bathroom. So I finally gave up on the "One Word" concept and asked, "Please turn off the bathroom light?" He did.

The one word thing about Alzheimer's? "Insidious" and it always wins no matter how closely you follow or create the rules!

Neurons

Now think about what it must be like when those connections and associations begin to break down. Language no longer works, thoughts exist but expressing them is not possible, memories continue but you can no longer access them, routine is no longer possible. Life goes on but you are slowly not recognizing most of it any more.

Being Aware

I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.

I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.

He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)

While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.

What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.

This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.

So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ...  there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.

With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

Without Warning

A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.

Click here to see a video about WITHOUT WARNING.

Purpose

An interesting observation: When Gregory has a purpose behind what he wants to say, the words just don't come. Sometimes he is able to work out the details of his idea and other times able to hint or dance around the idea. On the other hand, when he just says what he wants to say, without any purpose, the words come easily.

He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.

Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.

Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.

On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.

Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y  E  S!

I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.

To Every Thing There Is a Season

I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.

My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.

Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.

Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.

Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."

"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.

Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"

"Why do you think today is someone's birthday?" I gently asked.

"Did I mess up again?" he wasn't able to explain. 

"What made you think today was a birthday?"

After a thoughtful pause, "Oh, I can't go through all of that."

Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.

I think I'll go take a shower and cry.

The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, a time to reap that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace. With Alzheimers's ... there is only time ...

Hanger Hell

Can you imagine not being able to figure out how to use a hanger? Let alone which hanger to use for a shirt and which to use for a pair of pants? And when the color of a hanger changes, it becomes something else. Can you imagine?

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.

Just Checking In

Hi. It's been a while since I've posted so I guess you can assume that for now (how ever long that may last) things have settled down. That either means that Gregory's changes and lapses have slowed down or he has not been challenged or confused recently or it means that I have reached a new level of coping, supporting, anticipating, covering, running interference, etc.


Oh, did I mention that that last Tuesday: 1) He didn't remember how to use his key to get into condo ... but did have sense to get help from management office. 2) Because the ususal “lunch meat” in the refrigerator ran out I left him a tin of tuna for lunch but the change caused him to be totally confused about how to make lunch ... but did have sense to go out to a restaurant. and 3) He forgot how to run DVD again even though it is “one button on” and “the same button off." Then he knew how to turn off the DVD after the movie with the “one button” ... but when I complimented him, he thought he had done it all wrong and apologized.


But you know what, I remained even and that helped both of us.

A Recurring Theme

If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.

As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.

My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.

My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.

As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.

They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.

Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.

This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.

Last night was so frustrating that each time  I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.

It was then that I realized that currently, in many things, my helping him has  become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.

Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.

I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.

So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.

I will need to ask less, expect less, and love more. Him and myself.

He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.

Not All of One Part: In Four Acts with One Intermission

This has been a new adventure. Suddenly items with more than one part are causing Gregory some confusion. I will have to keep an eye on this.

ACT ONE:
Scene One: Book Mark
Scene Two: Book

Last night as we were finishing up reading, Gregory seemed to be having some trouble with his plastic, clip type bookmark. He asked me if I had another one like it and I asked why. "This just doesn't seem to work," he replied. Then after looking at the bookmark, this way and that, he said, "This may seem foolish, but I do not know how to make this work."

I demonstrated, two times on my book but and he still didn't get it. Then he realized that the reason he didn't understand how to use the bookmark is that he had put his book away and the bookmark by itself didn't make sense. Once he had his book in hand again, he was on the track.

ACT TWO:
Scene One: Electric Kettle
Scene Two: Electric Kettle Base

This morning a similar event took place. He came into the bedroom where I was working on my computer and while he couldn't explain in detail, he said something was wrong in the kitchen. I followed him in and he pointed to the electric tea kettle and said, "It doesn't seem to be working. I have the water but."

He had filled the kettle with water but it wasn't heating up. The reason it wasn't heating up is that he had placed the kettle on the counter next to the base but not ON the base. Obvious to me but not to him. Once he realized that one needed the water in the kettle AND the kettle needed to be on the base to heat the water, he was back on track.

INTERMISSION:

You may have noticed that a lot of these recent BLOG entries have been describing new things that have been going wrong, misfiring, short circuiting, causing me anguish. I feel like I have been spending a lot of time detailing Gregory's progression (regression?) and that the BLOG may seem like so much complaining. But things seem to be progressing (regressing?) at a faster rate. Hopefully it will slow down after a while.

Certainly the BLOG is one way of my dealing with our life and also a way of sharing our life with people who care and need to know. Right now, however, I am not sure how helpful this is being to other people dealing with Alzheimer's and other dementias. Let me just say that perhaps my experiences will help if only to show you that you are not alone. Hang in there. It will get worse. You will get better at dealing with the details.

ACT THREE:
Scene One: Water
Scene Two: Glass

Just now Gregory is a little distracted because the plumber is working on the kitchen sink. He asked me, pointing to the bathroom, "Can I get water in here?"

"Yes," I replied. He stood in the bathroom doorway not knowing what to do. His hand kept taking the shape of holding a glass but he looked around getting more confused. He left the room and paused in the hallway.

"Do you need a glass?" I asked.

"Yes."

"Here use this one." He came back taking the glass I had on my desk which was half filled with water. He wanted to fill it with more water but already forgot that he could get water in the bathroom so he headed for the kitchen where the plumber was working. I called him back and said, "You can get water in there," pointing towards the bathroom.

"Right," he said. Once in the bathroom however he did not know how to 'get water." It took him a real conscientious effort, thinking out loud, and finally he figured it out saying, "Of course!"

ACT FOUR:
Scene One: Helping
Scene Two: Typing
Scene Three: Worrying

Meanwhile I am being distracted helping Gregory, typing this BLOG, and wondering how much this plumber visit is going to cost me. Life goes on.

CURTAIN

Reality Test

Most often I try to anticipate Gregory's needs, especially as his language and communication abilities continue to disintegrate. Most often I am able to figure out what he wants to say or tell me. As I have written before, its those times that I cannot anticipate or guess that make for difficult interactions and therefore are emotionally heavy situations for both Gregory and me.

Another area of difficulty is Gregory's ability to make connections and associations. I will ask him to get me a new kitchen towel and he will not recognize word "towel." This has been happening more and more as his grasp of the meaning of any particular word continues to fail.

For example, as he is trying to ask me about where his gloves are, he will wiggle his hands but when I ask, "Are you looking for your gloves?" he will reply, "No." Even though it is his gloves he is looking for. Is it the disconnect of the word "No" or the word "Gloves." Sometimes that is clear to me and other times it is not.

Most difficult of all is when I feel that I have to "wait it out" and not help at all. Sometimes I feel the need to do a reality test to see exactly how much Gregory is going to be able to do. Last night I asked him, as I usually do, to set the table for dinner. He got the place mats and napkins done but forgot the silverware. He moved on to fill the water glasses.

He usually stands in front of the open refrigerator thinking about "what's missing." Then he will realize and shut the refrigerator, go to the cabinet, get out two glasses, and put them on the counter. Sometimes I will just say the word "glasses" and he will click in and proceed.

This time he stood in front of the open refrigerator for a long time. He looked over at where the empty glasses usually sit while waiting to be filled but it didn't help this time. Then he closed the refrigerator and opened the freezer. He pulled out the ice drawer and scooped out a handful of ice, turned towards the usual "where the glasses are waiting place" and stood, confused, hands cold with ice, not knowing what to do.

He looked at me several times and I soothingly replied, "I'm just being patient." Sometimes I will say, "I am just giving you space." This is to let him know that I am not upset or angry that he is confused.

Next he returned the ice to the drawer, closed it, and closed the freezer. He turned to me and said, "OK I give." I went to the cabinet hand handed him two glasses. He successfully took over from there. But what an ordeal. And watching the look on his face as he becomes increasingly confused (sometimes embarrassed, sometimes angry, sometimes just confused) is very painful for me.

Reality checks are no fun for me to suffer quietly and probably not easy for Gregory, but they are necessary so I can keep tabs on what he can do and what he cannot do with greater or lesser frequency. When it looks like the skill is really gone, I will not ask him to help with the skill or I will give a lot more support up front. For example, I am about to start handing him two glasses every time I ask him to get our dinner waters. Soon I'll have to put out the place mats, napkins, and silverware and hope he can figure out where it goes. Time will AND DOES tell!

If I haven't already given you an idea...

If I haven't already given you an idea of what it is like to live with someone afflicted by Alzheimer's here is yet another story. (I'm being light with this opening. Don't take offense. It cheers me up and makes me feel like I am "joking" with you.)


After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."

He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.

Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.

I took the stainless basket, put it in place over the drain and asked, "Does this look better."

"Yes, I am home now. Thanks."

So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc

To be continued... (I am sure.)

Milestone

I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I am no longer angry when he does
Things that seem so "stupid."

I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I really understand now
That he can't help it, he isn't able.

I have passed over the next milestone.
Not good nor bad but a relief.
Really understand that he can no longer
Make the connections that are needed.

I have passed over the next miestone.
Not good nor bad but a relief.
I seem better able to support him
And to be respectful, loving, and kind.

I have passed over the next milestone.
Not good nor bad but a relief.
He has passed over the next milestone and remains content
and that is good and that is a relief.

Midnight

Midnight, sleep no where in sight.

Today he sat down to his evening coffee,
Remembering the cookies but forgetting the coffee.

He was upset that the art book he has been looking through was gone,
Until I pointed out that it was next to him on the couch.

For dinner, I asked him to "Get the water."
He stood in front of the open refrigerator door deciding how to proceed.

Eventually he closed the door but then forgot what he was doing,
So he opened the door again to ponder the situation.

After a while he remembered and went to the cabinet to get two glasses.
He opened the refrigerator door and filled the glasses with water.

He stared into the refrigerator looking for the ice cubes.
"Bottom drawer," I suggested. He was able to follow through.

At bedtime a space was empty in his "pocket drawer,"
He didn't know what was supposed to go in the empty space.

When I asked him where his cell phone was,
All he could give me was a blank stare.

"Do you know what a cell phone is?" "Yes."
So I called the number to see what would happen.

Luckily we heard the phone ringing,
But he didn't know how to follow the ringing.

We followed the sound together into the closet in the bedroom,
And there on the floor, under his pants hanging neatly on the rod was his cell phone.

"How did this get there?"
Again a blank stare.

Last night at the restaurant, he couldn't figure out how to  "close" his cheeseburger,
Then he couldn't figure out how to use his knife to cut it in two.

When these situations remind me of what I have to look forward to,
I get numb. I get profoundly sad. I cannot even begin to imagine what I will do next.

Midnight, sleep no where in sight.