Come Visit

Come visit my writer's blog for more on life after Dementia/ Alzheimer's. Yesterday was Gregory and my 41st anniversary. Read about how it passed. Mark the link and visit often. Looking forward to seeing you at "michael a horvich writes."

http://mhorvich.blogspot.com

Condo Changes

I am writing this BLOG from the new home of my computer, on the living room "Library Table."

When Gregory and I moved into the condo this was our dining room table but for the most part we ate on the stools at the kitchen counter.

When we entertained, we would set the table as it sat against the wall and when dinner was announced, we would pull the table out from the wall. Easy peezy.

On a daily basis, Gregory used the table as his "office" and mine was in the bedroom. Slowly his table became a place for his collections as well. (I think he began collecting in response to and in deference to my collecting, which as you know is monumental!)

When we had more than four people to dinner, we started not wanting to clean off the table of all the collections. So we would leave it against the wall, sit four on the front facing the wall, and his collections) and one on each side. The table is large enough to easily accommodate six people in this way.

Finally, hate to admit it, we stopped entertaining more than four to sit down dinners. Too much trouble. If we were having more than four, we would do buffet which was much easier considering the ample counter space on the kitchen island and the wall counter behind.

When Gregory moved to The Lieberman Center, I made the Library Table my "high touch" place to read, be creative, etc with my "high tech" place still in the bedroom with computer, files, etc.

Over time, the Library Table has become a dust collecting collection collection. I wanted to make better use of it so have decided to move my computer out here, minimize my need for filing baskets, pen holders, messiness etc.

I plan on replacing my 9 year old computer with a new iMac 27" and the new 27" will not fit into the bedroom computer cabinet. Thus my "high tech" office joins forces with my "high touch" Library Table!

Everything will be stored in the filing cabinet end table next to the space. Supplies etc will be stored in my closet. Printing will be wireless as will backup and internet, so I hope to minimize equipment, cords, and electrical wires.

In the bedroom, in place of where the computer used to live, I am going to put a tall bookcase (never enough room for books) and create a reading corner with a comfortable chair, side table, and lamp.

When everything is in place, I'll add some photos. Meanwhile, I think I am going to love the new arrangement. As Pee Wee Herman says, "Then why don't you marry it?"

I might!

Here Come Those Emotions Again

I went to visit Gregory today. He was asleep and I couldn't wake him up. Manny reported that Gregory had slept most of the afternoon and Tomika reported that he slept most of the day.

I asked the nurse to look at him which she did right away. His blood pressure, pulse, heart rate, oxygen count were all normal as was his breathing. So nothing looked wrong, and the excuse was "Maybe he didn't sleep well last night."

I left him to sleep and returned home, not terribly upset but not completely calm either. Why was he so far away? Why would he not wake up? Was he keeping his eyes closed on purpose? Was he being stubborn? Was he becoming comatose? I was not terribly upset but not completely calm either.

While I was washing my dinner dishes the emotions crept in and I got frightened. Not for Gregory but for myself. I realized that even in his current condition, he is such an important part of my life. He is where I go almost every day to visit. I still shop for him, find clothes for him, organize his room for him. I will miss him so much when he dies (assuming he goes before me.) 

Then I suddenly felt so alone. Even in his current condition he is with me and I will miss him so much when he dies. Who will I take care of? I am afraid for myself at  how alone I will feel when he is gone.

Behavior Changes Due To Medication Change

Lots of posts today as it was a very active day for Gregory.

First his helper Manny called in sick so I spent all day and evening with him, then Pat dropped in for a visit, and then Jan came and spent dinner with us.

Also, less than a week ago, the doctor at Lieberman changed one of Gregory's medications. Aricept, the most well known of the Alzheimer's drugs, can cause stomach problems.

Gregory had been having some digestive problems so they changed from the Aricept to an Excelon Patch. Because the patch is absorbed through the skin into the blood stream, stomach problems are avoided.

We were told to be on the lookout for unexpected changes because of the switch in medications. I didn't expect to see happen what has been happening.

Gregory is more alert, more talkative (although not more coherent,) more animated, and more present (although still unable to communicate.)

One problem with this is that he has been more talkative but still has problems with word use and therefore has been a little more frustrated. So we listen to him, agree, and nod our heads affirmatively. This seems to comfort him.

Also, he seems to be "thinking" more and trying to express what he is thinking, but again is unable to do so and this also frustrates him. I express it this way: It is as if he gets a complete visual image of something he wants to share but as he is struggling to find the words to express the image which he is unable to find, the image slowly fades away.

So he has been alternating between very happy, smily, laughing, joking around and crying, being frustrated, and being mildly angry.

Will be interesting to see what tomorrow brings.

Watching TV

Always more to learn when loving and living with Alzheimer's Disease. I continue to get supportive/  informatve e-mails from the various memory care facilities I visited before having Leiberman be our choice. The topic this one discussed, watching TV, was one which happened to me and now in hindsight I realize that Gregory's upset was his way of telling me he was having trouble following the plot of a TV series he used to love. His reaction surprised me but now I understand.

Certain types of television become harder to track and therefore enjoy as dementia progresses. An activity that should be a pleasurable way to pass time instead can become vexing.

Complicated plots may be too confusing, as earlier developments can't be remembered. Shows with quick cuts and no story line (such asAmerica's Funniest Home Videos or cooking shows) work better. 

Slow-paced documentaries or nature shows may also appeal more. 

Avoid commercials if you can, because each break in the show presents a whole new story to follow; instead use TiVo-type recordings or movies. (from www.caring.com)

The show we began watching was the third series opener of "Downton Abby." We had watched all the previous episodes and were looking forward to the new season opener. Some fifteen minutes into the new episode Gregory became very vexed, angry, and was acting out. I turned off the TV (at least I knew to do that much) and was able to talk him down. Instead we tuned into "Big Bang Theory" and he was contented again.

I didn't realize what had happened but the lesson learned is that sometimes the person with Alzheimer's does the best they can to communicate their needs with you. One must realize that the WAY they communicating these needs may have nothing to do with the PURPOSE of their communication. It is a guessing game but if you are alert enough, you can win.

Now I have a DVD that Gregory loves to watch on the TV/DVD player in his room. It is a video of beautiful scenes of nature across the seasons, each backed with lovely, appropriate classical music. Now and then an animal enters the scene in its natural habitat. For example: a goat is climbing a mountain during winter while something from Beethoven plays.

Another type of video that not only Gregory, but it looks like every one at Lieberman loves, are the classic early musicals of the 60's and 70's: South Pacific, Flower Drum Song,  The Sound of Music, Carrousel, etc. The story line doesn't seem to matter but the individual songs are fun to watch, the people beautiful, and the story for the most part happy. I.E. NO VIOLENCE!

Here and Now Complications

My life right now, who I am, is so complicated with such mixed emotions. I asked my therapist how I could be feeling such dichotomous emotions and he said the answer is "Wisdom." 

Emotions are not separate but rather opposites along a continuum. In and of themselves, emotions are not good or bad. They just are. To be complete we need to acknowledge all of our emotions while trying to keep them in balance. Allow for happiness. Allow for sadness. Try to stay somewhere in the middle. 

I love my solitude, I miss Gregory. I love having the condo to myself, I wish he was here with me. I like making decisions by myself, I have no one to rely on. I feel such joy at the same time I feel such despair and loneliness.  

If I look through Gregory's eyes, I am at peace. When I look through my own, I am at turmoil. I have always had a life of my own and separate friends and personal goals/ambitions but I would love to be able to share their progress with Gregory like I used to. 

I yearn to cuddle in his arms at bedtime. I miss a good FUCK. I miss a good back rub. I miss sharing my feelings after watching a movie. I miss eating half my dinner at the restaurant and then switching and enjoying the new tastes in his half. I miss his help carrying the groceries in from the car. I miss his company while waiting in the lobby for a doctor's appointment. I miss his patience with me. I miss his supporting and encouraging me to be who I am.

I am doing a fairly good job of living in the here and now like Gregory is doing, know in my heart that HERE and NOW  is all we really have, but find myself wondering if I should be dealing with or thinking about the future. To be honest I cannot imagine a future.

Lie Down and Die or Hunker Down and Keep Living

"Lie Down and Die or Hunker Down and Keep Living." That is a saying that Gregory and I adopted early after his diagnosis with Alzheimer's some 11 years ago. Now it is time for me to renew that saying for myself as Gregory no longer has this fight. He is content. I hope he can continue to be so.

When I am with him at Lieberman, if I think about the man Gregory used to be as recently as last Christmas, or if I think about Gregory while I am at home and compare that to the man he used to be as recently as last Christmas, or if I spend too much time thinking about what our relationship had been like over most of the last 39 years, or if I by chance catch a photograph of our earlier days; I might as well stop writing this post and sob and scream and dash my body against the walls and  throw myself into bed depressed not to emerge for days or weeks, if ever.

Maybe some day I will be able to think more about Gregory and my past, and revel in the memories of our beautiful time together. But for now I need to focus on the here and now, as Gregory seems to be able to do, and enjoy our beautiful time together now, today, here and now.

It is not easy seeing him in his wheel chair: immobile, unable to toilet himself, unable to feed himself, now and then tremoring, needing to concentrate on how to get the water through a straw or bite a piece of sandwich, not being able to use words to share his thoughts, crying unexpectedly, so focused on some far off object or through that even I cannot get a response; all this surrounded by 70 to 100 year olds who are worst off than Gregory and sometimes in the midst of their cries and shouts and anger and confusion and shit smells and food messes clinging to the napkin tucked around their neck.

But what I am able to see, so this is what I focus on, is a community in which Gregory feels safe, loved, taken care of, provided for, having limited wants and needs. Gregory is past the point of clinging to fears, unnecessary expectations, the past or future, holding on to the need for "things."

What I am able to experience is how he brightens up when he sees me or a visitor, how he is able to smile and tell me he loves me, how he tells Pat, "You are beautiful." or Cheryl, "Oh, it is you!" or Jan, "Oh wonderful." or me when at dinner I told him I needed to talk to the Social Worker and that I would be right back, "Oh that would be lovely."

I look forward to his hugs and with some delay in sound his large smacks of a kiss on my cheek. We can hold hands for hours and watch "South Pacific" over and over again on the TV in his room. I can offer him a piece of chocolate or a cookie and he is delighted. I can take my leave telling him I will see him tomorrow and he will acknowledge with an, "OK."

For now this is all I need and I relish each moment because I know that even these minimal interactions will disappear. But what I can hold onto is our love for each other, maybe at a later date our memories, and to the knowledge that all of his needs are being beautifully taken care of by a huge team of people who care. While Gregory's illness has gotten worse, his situation has gotten better!

Post Birthday

An E-Mail to Susan:

Thanks. Your words and insights are always comforting. Your birthday wishes meaningful.

My birthday was spent with Pat, a new friend of three years, who is also a writer and with whom I felt an instant bond when we first met at a writers conference. She is good with Gregory and good for me. We have a lot in common, a lot of similar views, and most of all are easily respectful of each other's individuality and differences.

On my birthday, she and I went to Lieberman to help G with lunch, had some birthday cake in his room, went on to an antique mall in Gurnee (where I saw the most amazing hand carved German Noah's Ark for only $5,000,) went home for a nap, got back together to open gifts (Pat does good gifting,) went to Pete Millers for a huge steak and some jazz, and ended up back at the condo with another small birthday cake. 

It was difficult without Gregory by my side, but I did OK. You remember that my mom died on my birthday (still consider it a blessing from her to me) and now with Gregory more or less out of my responsibility, my birthdays (and currently my life is) are "spent" and/or "contemplated" rather than "celebrated." But that is OK. 

Many, many friends and family went out of their way to send me wishes (cards, calls, e-mails, texts, Facebook, wow what a large number of ways we now have to communicate, if only with a LIKE click) and that felt nice although I kept low for the most part. Today I will finish responding to my well wishers.

Still feel like I am treading water but the future is a large possibility islanded out there ahead of me. Talk soon,

Michael

An E-Mail to Friends

Dear Susan and David,

Hi. This time of year is usually when PV beckoned. 

Now it's the Lieberman Center at $9,900/month. But after six months we will switch to Medicaid and $60,000 is a small investment for Gregory to be taken care of for the rest of his life! I go to visit almost every day for an hour or two. I have been fixing up his private room so it is a refuge for me, for visitors, and perhaps for him. I know he thinks it looks nice. 

A small freezer/refrigerator combo in black, a black chest of drawers for "kitchen" storage, a small flat screen TV (large ones in pubic spaces,) two nice sturdy chairs, one matching ottoman; a desk running under the window with a plant, framed photos, a coffee table picture book on a tilted stand, a cup with a few pencils and his reading glasses (not sure he knows to use them;) a bed side table (with locking top drawer for me to keep things private,) a dresser, an armoire, a large closet, paintings that Gregory has done on the walls. The bathroom is tucked in as well but a shared shower (since supervisions is needed) is down the hall. 

Yes, I am on an emotional roller coaster. When attending to business I am OK but during the still hours of the night I miss him with my tears. Sometimes visiting him at the Center is OK, other time very difficult. I have compared it to being in a "Fellini  Movie" without any back ground music! I have found that many people do not know Fellini so I have attached a clip. 

The most difficult part is that in daily life it is as though he is dead; the condo is quiet, everything is mine, he will never be here again to share the love we created it with, I sleep alone instead of drifting off together while holding hands. I didn't expect to grow old by myself and that makes me sad as well. I try not to think of what "old age" will be like for me or for Gregory for that matter. Not pretty and certainly no future in it!

On the other hand in my new role as Secondary Care Giver, my life is a lot less stressful, the work load is reduced, and at times "out of sight out of mind." I can get dressed for one, not two. I can clean up after one, not two. etc. I can travel again and continue to enjoy theater, opera, etc. I'll have more time to write and to be creative. Maybe I can be a supernumerary at the Opera again, I have missed that a lot. Who knows what lies ahead but it does feel like there are many doors waiting to be opened.

His family has always been, and continues to be supportive of everything I do and all of my decisions. They go out of their way to let me know they are here for me and to feel loved. I love them dearly as well.

In many ways, this whole experience  of Gregory's being at a memory care center is surreal much, as I said, like a Fellini movie. The stages of Alzheimer's while Gregory was at home were gradual and in a familiar environment. I worked diligently to keep him safe, happy, content, occupied and that worked well up until the last couple of months. We still ate out and attended theater etc but it got more and more difficult.

In the end, I lost my patience with Gregory less and less as it became more and more obvious that he did not have the abilities/skills any longer. His behavior no longer looked bad or selfish or thoughtless (even thought I knew it never was meant ... it looked like it was and was able to trigger old responses. These were quickly stopped with apologies quickly in hand.)

All along, I have continued to develop myself as a person with a life and interests but most of my thoughts and time were with Gregory. Now I have a lot of time on my hands and a life to redefine. I am grateful for so many things and my heart is happy that Gregory is being well taken care of. All for now, as always,

Fondly,

Michael

P.S. This e-mail was written for you two but I will turn it into a BLOG.

A Turn of Events

As you have been following Gregory's continuing journey with Alzheimer's, you will be aware that within the last few months the journey has been getting increasingly more difficult. This last two weeks has been very difficult with his having crying bouts, major confusion, restless nights of sleep, more difficulties eating, etc.

Up until now the Alzheimer's seems to have provided a buffer allowing him to be shielded from the day to day skills and memory losses and to live a calm, happy, contented life. That has changed during the last two weeks with increased bouts of depression, upset, crying, confusion, aimless wandering, defiance, and some minor aggressiveness.

The last week has seen periods of my not being able to comfort him, calm his upset, direct his activities, etc. It is as if the Alzheimer's has been running out of control. Up until now I have been able to support Gregory is a way that helped him keep calm.

This morning, after three very difficult days; he would not be calmed, was very angry, would not let me help him. For lack of better description he turned his discontent, frustration, and hatred on me, wouldn't let me come near him, didn't think he could trust me, and became fairly violent. (Obviously I did not take this personally knowing what Alzheimer's can do!)

The measure of taking action was "I was afraid for him and myself" so I called 911. Not long after police officers, paramedics, and an ambulance crew were at our door to help. Interestingly enough Gregory was relieved that someone else had come to help protect him from me. He cooperated with them getting him on a gurney, into the ambulance, and off to the emergency room. I followed in my car.

When I got there he was calm, but my arrival excited him again. They gave him a sedative to help calm him down, I left the room (knowing he was in good, caring hands,) and routine blood and other tests were done to rule out extraneous infections and other causes for the spike in "craziness." All of the test results are not yet back.

I am currently back at the condo for a few hours quiet time, Gregory is with his Companion Alaksh and was happy to see him, Gregory isn't as upset with me right now, and he will be in a regular room over night at the hospital with a "sitter" from 11:00-7:00. Further observation and planning will take place tomorrow.

I'll keep you in touch.

Love, Valor, and Compassion

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

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

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

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

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

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

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

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

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

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

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

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

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

Update on E-Mail Update

My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)

Meanwhile I am afraid that we might be the closest that we have been to  having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.

For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc

One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.

Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")

Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.

I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!

I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)

Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."

As you know Gregory's recent downhill adventure, along with my journey beside him, has been dramatic.

A month ago, I took him off his meds because it was not obvious that they were doing anything and he was having trouble swallowing pills (a battle every morning and bedtime.) I did this with an OK from his doctors.

I decided that I would observe to see if taking off the meds made a big difference. Well it has. His abilities have been plummeting and all kinds of bizarre behaviors are showing up. It could be just a function of this next stage of his Alzheimer's or it could be because he is off the meds.

The other part of the experiment was that when first put on the meds some ten years ago, his abilities peaked with improvement. The doctors were surprised because the meds are supposed to "slow down loss" not "peak improvement." 

I thought that if I took him off meds and watched and then put him back on and watched I might see a difference and thereby proof that the medications were worthwhile.

So we will go back on the meds in January.

Fantasies Revisited and Released

One of my fantasies about the future with Gregory has been that we could still travel if we had a third party along to help. That could be in the shape of paying the expenses for a friend to travel with us or even a hired professional care giver.

Gregory and I have looked at every Viking River Cruse video sent to us via e-mail and talk about how wonderful the experience would be to travel the rivers of the great cities of the world, using the ship as our hotel and waking up to tour a different city every day or two. No packing and repacking, no busses trains or airplanes. Good food, comfortable travel.

http://www.vikingrivercruises.com

But the reality is that Gregory is past the ability to travel and I am past the ability to support him so he can travel. It is a sad realization but one that I probably need to be honest about.

Even packing and going to visit family in Michigan is full of difficulties in planning, routine, time,  and space. Then reentry at home, where you would expect home routine to help, takes its toll.

I am soon to release an update to family and friends and I will post it here as well but things have really been downhill for Gregory the last month or two. Things have been changing so quickly and basic skills have been disappearing so quickly, that I haven't been able to keep up with knowing how to cope with and/or accommodate Gregory with his losses.

Stay tuned ...

A Visit With Family

As usual we had a wonderful time during your visit. For Gregory, he loves you lots and enjoys your being here. For me, it is nice to have people around the house with whom I can interact. For some strange reason, it also helps when others can see how Gregory is. 

When I am here by myself, on duty 24/7, I feel unappreciated by life. Not that I need people to "fawn" over me, but having others "experience" it with me, helps! Makes me feel less alone. Makes me feel less "crazy" myself.

So thanks for hanging in there. You both did a great job of "pretending" to understand and agree with his "nonsense" conversations. With open face and interested looks.

As we were falling asleep last night, Gregory was already sawing zzzzzzz's. I lie on my side and watched him thinking how he is so far from the man I used to know and love. Sometimes I lie there and relive various parts of our wonderful life together: milestones, business ventures, travel, family, friends, theater, entertaining, Gregory's architecture, Michael's Museum. 

But at the same time, I am alright with the fact that it is what it is and I love him at each new level. Sometimes it is frustrating, sometimes it is incomprehensible, sometimes it is down right shitty (in all implications of the word :-) But again, IT IS WHAT IT IS, and for the most part, I cope. He seems happy and content. What more could I ask?

Love you more, etc.

P.S. While this was written for you two, I will share it on the BLOG because it is part of the continuing story. 

The Change Is Up To You

This from www.caring.com 

Brain damage will make it increasingly difficult for the person in your care to ask for help. Part of the difficulty is in forming the thought and finding the right words. And partly it's a disappearing awareness of having any problems. What this means: You'll need to become an ever-better anticipator. You've probably already discovered the benefits of a predictable routine for the day and for each activity within the day. Adjusting your language helps, too. Avoid asking, "Are you ready to . . . " "Would you like me to . . . " "Are you hungry?" Instead, rephrase questions as matters of fact: "It's time to . . . " "Now let's . . . " "Your dinner is ready."

Companion Report #2 by K.C.

It’s been approximately 12 months since I first met Greg and his symptoms seem to be gradually getting worse.  Below are some changes I’ve noticed in Greg, as well as things that still seem to remain the same.  I should note, however, that my observations are highly subjective.

Things that seem to have changed:

Greg’s capability of using words has declined slightly. Words do not come out as he wishes, and he frequently makes mistakes even when they do come out.  Sometimes, the word itself is correct, but it is not the right choice.  For example, when I went painting with him, he said “red” looking at “blue”, and this happened a number of times.  Other times, he struggles saying words.  For instance, he said  “pint, pinkle…” when he meant to say “pink”.  His struggle for words is not anything new, but it seems to me that the frequency has slightly increased. 

He needs more assistance in everyday life activities (getting dressed, preparing lunch, cleaning up, etc.).  He gets confused, disoriented, and even simple tasks can tire him out.

It seems like his hands shake more often than before.  This is especially noticeable when he is trying to bring food or drink to his mouth.

His dependence on me has increased.  This has to do with him needing more help, but also his feeling more comfortable around me.  For example, he might tell me “you do it!” when I’m trying to explain how to put on his scarf before we go out.

He might get tired more easily than before.  After we go for a walk, it seems like we always speak about how tired we are. 

Some routines he had little trouble with several months ago are getting more difficult for him.  I was surprised when he asked me to make his lunch for the first time.  He used to put together a nice salad for himself, but now it seems as though he lacks the confidence to do so.  However, I would suggest that his forgetfulness has not happened over night, and it seems to do with how long it has been since he last made lunch.  Apparently, it had been quite some time since he last made his salad, which may play a role in why he forgot how to do it.  

Things that seem to remain the same:

I have never noticed any changes in his personality.  He also does not have mood swings either, and he is still the same Greg that I know.

I have never noticed Greg hallucinating.  His sense of smell, sight, hearing, still remains the same.  Perhaps delusion is not the right word, but there are certain things Greg believes, which are unrealistic.  For example, he believes that Meryl Streep lives near by (I haven’t checked whether this is true or not, but seems unlikely).  I’ve heard this a number of times from Greg.

Memories from the distant past seem to remain pretty much the same. 

He can still sympathize and understand what others are feeling.  For example, when I was talking to Michael about how a package sent from Japan was stolen, Greg knew how upset I was and he sympathized appropriately.  

Although Greg sometimes forgets to flush the toilet, I’ve never helped him use the bathroom.  He goes to the bathroom when he wants, and he has never asked for help.

Although he doesn't remember people’s names, he still recognizes them. Occasionally, we bump into somebody we know—or somebody he knows, but he always recognizes them, which is a good sign.

We can still communicate even though he cannot express what he wants to say perfectly.

His walking speed has not changed, and he has no problem swimming.

I have not noticed any decline in his appetite, and he still eats quite a lot.

Although I do not know how much he understands what he reads in the newspaper, he still sits down and reads it.