Today

Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.

And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.

In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.

On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.

After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.

No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.

When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.

My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.

I grief and am also grateful for Barbara's and Marie's deaths.

Going, Going, Gone

Maybe I should just keep record on a separate piece of paper instead of posting it to my BLOG but this way I can: 1) process, 2) share, 3) record, 4) maintain, 5) save, 6) cry.

SO FAR THIS MORNING: Gregory could not take simple directions on how to get his shaver to stop squeaking (at least he did figure out how to plug it in) so he had to wait until I finished my use of the bathroom (read taking a dump) to help him. We are not shy so use the bathroom together. It actually gives me the opportunity to monitor him without seeming like spying. But even my private moments have become his.

Next I had to remind him to put on deodorant and face cream. He could not find them so I opened the medicine chest and pointed. He was able to put the correct product on the correct area of his anatomy so I guess I should be grateful.

Then he put on his underwear (I missed noting if they were right side or backwards but guess that doesn't really matter) and sweats without my help. Fist time this week! So I guess I should be grateful. Doesn't necessarily mean anything for tomorrow.

As he was leaving the bedroom I mentioned, "Your paper is on your desk." 

He headed towards the front door. I called him back and said, "Your (corrected the word) NEWSpaper is on your DESK." 

He headed toward the front door again. "On your desk." "WHERE YOUR NEWSPAPER IS EVERY MORNING! Do you know where your DESK is?" 

"Yes, out there."

"Yes, out there," I reinforced.

Then the numbness, and tears, and confusion, and not knowing how to "fix" this type of interaction, and the fear of the future, and depression (and only a tiny bit of anger) follow. 

Then the processing for the BLOG begins. Luckily I had made my first cup of coffee before all this began.

Simultaneously through all this Emma, my kitty (GiGi is Gregory's kitty,) brings me her Krinkle Ball so we can play fetch. A little bit of unqualified love from my kitty and processing from my BLOG make me feel a little better. 

Perhaps making some signs for important places that Gregory does not seem to be able to make associations between the word and the place would help? Don't feel really optimistic about this but I will try. 

Perhaps I need to make sure that I do not begin to meet my own needs (like taking a dump) until Gregory is finished with all of his and settled. Problem being that often when I think he is settled, a new aspect of getting settled doesn't work for him. But I will try.

At least I was not mean to him. I think I appeared patient on the outside but even feel guilty about what was going on inside, isn't that silly? I will try.

Last night we watched "Call for the Midwives" on PBS, a British program about post WWII and a group of midwives and nuns in England. Excellent second season. 

A baby is born with Spina Biffida. Medical know how will make the baby's life as comfortable as possible but one of the nuns talked about the early days when the best thing to do for the baby was to help it die comfortably. Even in the church, that was acceptable. 

After trying to help the parents but failing to help them deal the diagnosis, the head nun tells the grieving midwife, "Sometimes one has to admit defeat and move on. There is a lot more of life that needs to be lived."

I identify.

Today, this came across my mail: 

Shambhala Publications

SUPPORTING CONDUCT

With regard to one’s behavior, one must relinquish all the limitations implied in subject-object duality (gzung ’dzin gyi la dor ba). One should abandon all ordinary ways of assessing outer and inner phenomena, and the engagement or withdrawal of the mind with regard to “good” and “bad.” One must not, through mindless clinging to sense objects, stray into the five ordinary mental poisons. For when approached with skillful means, all are but the display of the great and perfect equality.

—Jigme Lingpa, from Treasury of Precious Qualities: Book TWO!

So does that mean that what I am experiencing is neither good nor bad? It only is? Is what I am going through bringing me closer to achieving great and perfect equality? And if all of this is true, how am I going to get through this journey to the end? Time will tell, but I will try.

Meanwhile, this is a list I have been keeping for a while.

GOING GOING GONE

Taking pills - comes and goes.
Putting a belt on - usually gone.
Using mouth wash - gone.
Word bathroom - gone.
Understanding most words - almost gone.
Using most words - almost gone.
Brushing teeth - comes and goes
Reading at bedtime - almost gone.
Going for a walk by himself - gone.
Picking out his own clothes - gone.
Getting ready for bed - comes and goes.
Shaving in the morning - comes and goes.
Getting dressed - comes and goes.
Toileting - comes and goes.
Communicating with words - gone.
Using a fork and knife - comes and goes.
Navigating the food on a dinner plate - comes and goes.
Fastening his seatbelt in the car - comes and goes.
Using a urinal when out - comes and goes.
Controlling flatulence - comes and goes.
Comprehension of TV - uncertain.
Helping make the bed - comes and goes.

A New Day

How do you continue each day when you walk into the bathroom to find your love sitting on the toilet, seeing if he has to go to the bathroom before you go shopping, with his shorts and underpants still up around his waist? How do you continue each day when he doesn't even realize what is wrong and isn't able to respond to your, "Honey, you might want to lower your pants."

According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.

Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading  and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.

So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.

Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.

Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."

He pointed to his Medic Alert bracelet, "This?"

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.

 

Existence

Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.

Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?

I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."

I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.

"Looking for you," he replied.

I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."

"I am sorry. I try my best."

"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"

I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.

Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."

Happy & Coping

I think I have written this before but after responding to a friend who read some of my Alzheimer's Blog and who I used to teach with many, many years ago, I felt it was worth saying again.

Again, thanks for the kind words. I like to say that on a scale of horrible to horrible it is terrible. But as you could tell from my writing, Gregory is happy and content and I am coping. We both seem to have Piece and Peace of Mind. Thus, we are doing well. I also like to say that if it stopped here I would be grateful but... and I try not to dwell too much on the future. We consider ourselves blessed and wake up each morning to face the day with love and joy. Take care.

m

I haven't been writing much as I have told you previously because of all the time, effort, work, joy, and magic of getting Michael's Museum at the Chicago Children's Museum up and running. Gregory took great joy and pride in coming to CCM with me during the month of April and the first half of May to help with the unpacking and installation of the MM exhibit. One morning he commented in the car, "I really like getting up so early and coming with, it is like I have purpose!" That sounded good to me.


Michael's Museum Exhibit Photos - Michael Horvich - Picasa Web Albums

Letting Go

After the events, probably usual events, of going to bed this evening upset me I went into the closet, no lights, and cried, no longer productive nor comforting to cry in the arms of my love. And as I cried and realized why I was upset, I whispered over and over, "It is so hard to let go. It is so hard to let go. It is so hard to let go."

Then my mind said to me, "There is power in words. If you say it is hard then it will be hard!"

So I started chanting, "I am letting go. I am letting go. I am letting go." And as I chanted I became more in touch with my emotions, cried harder, cried tears, cried grief.

Maybe I can tell myself to "let go" before I get upset ... "but is is so hard." Maybe that is a good compromise, "I am letting go and it is hard."

Work

Some people get up every morning and go to WORK. This may seem over simplistic to you, but bare with me.

WORK is part of their life and they get paid for it. After WORK, they go home and get on with living their life. The money they earn at WORK is what helps them pay for what they need to live; food, shelter, clothing, health care, entertainment, etc.

(A caveat here: Some people WORK several jobs. Some people not only WORK several jobs but also have a family to raise. Therefore some do not have a lot of time to enjoy life let alone have  enough money to provide the things their family needs.)

For some people WORK is living other people's lives. Nurses, doctors, home health care workers, rehab personnel, assisted living center staff, personal secretaries of the wealthy, Barak Obama's aids, etc. They get up every morning (or pm or night shift) and go to WORK. They spend their time at WORK making sure other people are safe, clean, comfortable, fed, entertained, etc. Then they go home and live their own life.

You get my point here. This morning after yet another "glitch" in Gregory's memory, I began thinking about the fact that my life has become the WORK of making sure Gregory is safe, clean, comfortable, fed, entertained, etc. While I do not get paid for my services (which are provided out of love) and while my WORK is 24/7, I still try to find some time to take care of myself and live my own life. Not easy.

As Gregory's personal, cognitive, emotional, and physical skills ebb and flow, as the "rules of the game" continue to change or at times do not exist, my WORK gets more difficult. And while I cannot imagine my life without him, I cannot begin to imagine how I will be able to continue to provide for his needs as they become not only more and more demanding, but as they become more and more cloud like. By this I mean undefinable, unidentifiable, non understandable. I know that I have options but meanwhile I have to get on with the day to day activities that support our life and try to deal with the emotions that overwhelm when the vail parts and I see the future.

At the same time I must mention that Gregory commented last night as we were drifting of to sleep, "I love my live." And while it is 18 degrees outside our condo is warm, our pantry is stocked, our bills are paid, our friends and family are supportive, our health is good, our life is good.

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.

HINT FICTION: Where to Hide?

Hint Fiction is a story of 25 words or fewer that suggests a larger, more complex story. I have been adding this type of writing to my BLOG  michael a. horvich writes for a while. Tonight a Hint Fiction was motivated by a dinner experience with Gregory so it rightfully belongs here. Hint Fiction can go everywhere I guess.



Where to Hide?

Nowhere to hide. It came out in a punishing sort of way. It caused two-sided tears. Instruct the jury to ignore the previous statement. Can't.

Dénouement

The dénouement (pronounced /deɪnuːˈmɑ̃ː/, /deɪnuːˈmɒn/) comprises events between the falling action and the actual end of the drama or narrative and thus serves as the conclusion of the story. Conflicts are resolved, creating normality for the characters and a sense of catharsis, or release of tension and anxiety, for the reader. (en.wikipedia.org/wiki/Dénouement)

Simply stated, the dénouement is that part between the ending and the end. In some ways I could compare it to the ending of many a famous opera in which the heroine or hero is stabbed, shot, poisoned, dies of TB, or all of the above and are able to continue singing for another 20 or so minutes until the final breath is taken. Sometimes it seems like the final breath but they regroup and continue on for another 10 minutes until the final final breath.

What will be the dénouement of Gregory and my story? We know that we are in the heat of the dénouement in this, our adventure with Alzheimer's. We know what the end will be. It is the dénouement that causes me fear, especially with so many spinning possibilities in the GYROSCOPE that has become our life.

I try not to spend too much time thinking about the details of this dénouement but let me rewrite the definition of a "Literary Dénouement" as it would read for an "Alzheimer's Dénouement." 

The dénouement (pronounced /deɪnuːˈmɑ̃ː/, /deɪnuːˈmɒn/) comprises events between the falling action and the actual end of the drama or narrative and thus serves as the conclusion of the story. Conflicts continue to be more complex and remain unresolved, eventually creating a sense of normality for the afflicted person but a spinning out of control sense for the caregiver and a feeling of never ending, unpredictable "craziness," or multifold increase of tension and anxiety for the caregiver. 

(With thanks to Pat Anderson for the "prompt" for this BLOG."

Hangers

Several alternate titles:
   The Trouble with Hangers
   Hangers Scare Me
   There's More to Hangers Than You Think
   Mommy Dearest

A day or two ago we had our guest/TV room, bedroom, and closet carpeting cleaned professionally. I'm way to old to rent a machine at Jewel and do it myself. I deserve to have clean carpets. Especially since Mariah, our cat, has gastrointestinal problems (she likes to vomit - hurl - give up the cookies when it comes to hair balls.)

While putting the closet (a huge walk in room, those of you who have seen it will understand) back in order, I took the occasion to make sure Gregory's clothes were in order. There were still a few summer shirts and slacks so I covered them in cleaner bags and hung them at the back. Then I "repaired" several of Gregory's "hanger faux pas."

We use three types of hangers, all white plastic. The light weight (LW) one is for shirts. Two of the light weight (2LW) ones are needed to hang the pants which are a little heavier than the shirts. The one with shoulder pads (SP) is for soft, stretchy shirts. The third is a heavy weight (HW) one for coats, winter bathrobes, etc. You can see that we have this all thought out.

My guess is that you just grab a hanger and hang things up without much thought. Chances are you grab the correct hanger for the job. It is always an interesting activity for me when I itemize the steps of the various activities in our daily life. Try it sometime. You'll be amazed.

Back to the hangers. Using one of the three types (and the doubling of one) should be easy for most people. Not for Gregory. He uses LW instead of 2LW for slacks and it breaks due to the weight. He uses LW instead of HW for heavy coats and they break too. Quantity wise, we have fewer SP and HW than LW. He uses SP to hang pants so we run out of them. He uses HW for shirts so we run out of them pretty quickly too.

For a while we had a system, invented by Gregory, which was to hang the hanger backwards on the rack as a signal that that piece of clothing had been previously worn. It was a hint that after a few wearings, the item should head to the laundry or cleaners.

This was very helpful because Gregory used to be so fastidiously careful about his clothing. For example, when he used to cook and wore an apron to protect his clothes, even the apron didn't get dirty! He has long forgotten that technique so periodically I go through his clothes and if the knees are baggy or the shirts stained or smelly, I send them on their way.

So this morning, as I was putting the closet in order after the carpet cleaning, I reorganized Gregory's use of hangers, checked to see what needed to be cleaned, and worried about the future.

As I have said before, I try not to worry too much about the future. Why waste good time while we have it. And things can (and do) always get worse, so why not enjoy today while you have it. But every now and then I allow myself a few minutes of worry and fear.

What will it be like when I have to lay out his clothes instead of just helping him choose one shirt over another? What will it be like when I have check after he has dressed himself that he remembered his underwear and sox? What will it be like when I have to dress him, button his buttons, and zip his fly? What will it be like when he will not have to get dressed because he will be in bed all day? What will it be like when I have to wipe his ass?

But enough. Today looks pretty good. Rearranging his hangers is no big deal. He made his own breakfast this morning (with a little help remembering what day it was.) It is snowing and we will decorate the condo for Christmas. Maybe we'll go out for a walk and then come home for some hot chocolate and cookies. These will be Happy Holidays for us. And hopefully for you as well.

Dreams Can Be Lessons

Last night I woke up from a dream in a panic . I do that now and then. Short of breath, tears in my eyes, needing to sob quietly so as not to wake Gregory. I calmed myself down, went to the bathroom, washed my face, and sat in the living room trying to remain calm and think through the dream.

In the dream, Gregory was trying to make a group of friends understand an architectural concept and was having great difficulties constructing his thoughts. The friends were asking questions, seeking clarification, and challenging some of what he was saying. Gregory continued to struggle to get his words together and out in a coherent stream and became more and more frustrated. He looked to me to help him tell the group what he was talking about but I couldn't understand what he was trying to say either.

I tried to get the group of friends to slow down and be more patient. I tried to get Gregory to slow down and be more calm. I tried to understand what he was trying to share. To no avail. I continued to feel the pressure mount, probably somewhat surreally, as dreams like to do.

Perhaps an added pressure on my dream is my current work on getting my manuscript together for review by a publisher that has requested to read it. In my panic I decided I couldn't do this. Gregory is going to get much worse then I can begin to imagine. How can I continue to remain supportive and optimistic and joyful when I am feeling angry, pessimistic, and fearful?

I decided that I was going to quit writing. Quit trying to share my experiences with Gregory and Alzheimer's. How can I think that I can really get a handle on this disease, on our difficult days, on his brain playing serious games with his thinking, continued language loss, more difficulties with day to day activities? How can I re-live everything three times: First the experience. Next dealing and thinking it through. Third, writing about it. Too much. Too much! I finally fell asleep and rested fairly well until my alarm went off.

Later that morning the lesson came to me. "You can only do what you can do." Release the pressure. You have been able to adjust and compensate so far, you will continue to do so. One memory loss at a time, I will figure out how to approach the next one when it happens. I will be more observant about what Gregory can tolerate and what he cannot and not put him in difficult situations.

Our life, my life, will change as his life changes. Our friends and family are supportive and aware, it was only the dream that made it feel ugly. My fear of the future kicked in. My fear of my inadequacies kicked in. But the future isn't here yet, so relax and enjoy today! And I continue to do a good job being supportive of his needs and mine, so relax and enjoy today. That was my message this morning. Not bad for a night's work!

Surprise Me

Funny how the most unsuspected song in the most unsuspected place can be a reminder that you and your loved one are living with Alzheimer's Disease. Yesterday at the Skokie Theater, listening to Laura Freeman sing Surprise Me, written by Beckie Menzie and Cherie Coons, I was reminded of the joy and the sorrow of our life.


With Alzheimer's each day is a surprise, each interaction can be a surprise, sometimes each moment can surprise you. Then for moments or hours or if you are lucky for a full day, the disease disappears and things seem so normal and balanced. 


Sometimes the surprises can speak of joy and love and other times they can speak of sorrow and loss. While the smiles and laughter and kisses and magic remain, the joy remains. As they slowly disappear, and it becomes more difficult to "live out loud" as the lyrics tell, the sorrow looms larger.


But either way I hold on to the joy and love and as the lyrics say, "I will be with you, I will go with you." And we will be surprised together. 

• • •

SURPRISE ME

Lyrics by Cherie Coons.

Music by Beckie Menzie


Take the long way, by the fountain in the park. Surprise me.

Light a candle, whistle "Dancing in the Dark." Surprise me.

Bring me odd little gifts, a jar of honey, a picture of some

place we've been, or take me there again. Surprise me.


Skip the play-offs, learn a different party trick. Surprise me.

Take the day off, phone my office, say I'm sick. Surprise me.

And when love's in the air don't ask politely, just kiss me, believe me I'll know.

Come on, just let yourself go. Surprise me.


But never surprise me by losing your laugh,

or changing that wise loving smile.

Just show me your magic,

I've known it was there all the while.


Take us higher, climb a mountain, steal a cloud.

I'll go with you.

Light a fire, paint a sunset, live out loud!

I'll be with you.


We have nothing to fear but peace and quiet.

Let's bring on the thunder, the rush and the riot.

Let's make the news, surprise me.

What's there to lose, surprise me. 


Anyway you choose, surprise me.

This Morning

As usual, this morning Gregory made the bed. Bottom sheet, top sheet, blanket, four pillows. This morning was a little different, however, in that he had the bed completed, neatly done, and hospital cornered when he realized that he had left off the top sheet. It was sitting in full sight on the bench at the bottom of the bed but he just didn't see it. This my is the "I am so fearful of what the future will bring" part.


After his mild reaction with an "Oh Shit!" Gregory unmade the bed and remade the bed correctly. He wasn't upset or angry and the curse word was more a realization than an emotional reaction. As usual, he faces each new day, each new confusion with grace and calm. This is my "I am so grateful for how well he deals with his Alzheimer's" part.


Every night after reading for a while, when it is time to turn off the lights and go to sleep, Gregory has to relearn the process. Each bedside table has two switches attached to the back corner of the table. The top one turns off the table lamps. The bottom one turns off one set of the room's side lights. I flick off the switches without thinking.


When it is Gregory's turn to turn off the lights, he first feels for the switches, isn't always sure what his fingers are telling him, so he leans up in bed to look behind the table to get a visual fix on the switches. He likes to turn off the lamp first and then enjoy the room's ambience with only the side lights on. Finally he uses the bottom switch and the room falls into darkness.


I can feel the energy of his thinking through the process. Sometimes I can see the process as he flicks the lights on and off, sometimes three or four times, until he understands how they work and until he can get the order of switching correct.


Again, I grieve and fear for the future that he has lost such a simple ability but I am grateful that so much of the wonderful man I have loved for 32 years is still there.