FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Saturday, July 31, 2010
COMMENT PLEASE
Hi. Glad you are here looking at my blog posts. May I please ask you to leave a comment? Under the blog entry is the word "comment." Click it, and a window will open where you can leave your comment. You can "sign in" from the list offered or just sign in as "Anonymous." You do not have to leave your full name if you choose not to. Would love to hear from you!
The Sun
Gregory has begun painting with oils with Nancy Rosen as his teacher. More on this later but wanted to share an e-mail reply I helped him with to some questions asked by another painter friend Susan Wiseman.
Susan,
I appreciate your comments. When I paint, I sit quietly for a few minutes then start to try any shapes or movements that come to mind. I don't really have a "plan." Nancy, my teacher, sometimes puts out a tray of colors for me to consider.
I just "play" with the shapes and colors as they arrive in my mind and on the canvas. Sometimes I make large gestures and other times I concentrate on small areas with small movements. The nice thing about using Oil Sticks, is that you just pick one up, refresh the tip, and draw. It is as if the stick is an extension of your hand.
You can put thin or thick or in between lines on the canvas and then you use a rag or paper towel dipped in Turpenoid to blend, thin, spread ... or even erase what you have done. Oil Sticks are the same as oil paint only in stick form not in a tube and not applied necessarily with a brush (although you can use one if you want.)
The "Sun" was my first on a larger paper (25x25.) Basically I "just did it." As it grew, one element led to the next. Just spontaneous progress based on what went before. One guide line is "NO WHITE SPACE TO BE LEFT BEHIND." I had this big empty space in the bottom right and after looking at it for a while, decided that based on the rest of what I had done, I wanted a big splash of "something" and decided on yellow. Then I "played" with adding the orange in a scribbled fashion. Funny having to think this through after having done it. Hope this helps.
Gregory (with Michael's help)
"The Sun" Oil on gessoed Stonehenge paper. 25"x25" July 2010
YOU MIGHT WANT TO VISIT THESE SITES:
Nancy Rosen's Studio
Susan Wiseman's Paintings
Labels:
Alzheimer's Disease,
Art,
Communication,
Happiness,
Identity
Friday, July 30, 2010
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!
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!
Labels:
Alzheimer's Disease,
Communication,
Confusion,
Dream,
Fear of the Future
Tuesday, July 27, 2010
Total Eclipse of the Heart Part 2 (Literal Video)
Refer to post of July 6th. I listed a song, Total Eclipse of the Heart that I sometimes listen to when I am feeling down and want to really hit bottom so I can raise to the surface again. The lyrics to this song really speak to my feelings. Watch the Music Video on U-Tube. There are also LITERAL LYRICS to the music video on U-Tube that always make me chuckle when I watch it. Give it a try also.
YouTube - Bonnie Tyler - Total Eclipse of the Heart
YouTube - Total Eclipse of the Heart: Literal Video Version
So that's the happy and the sad of it!
YouTube - Bonnie Tyler - Total Eclipse of the Heart
YouTube - Total Eclipse of the Heart: Literal Video Version
So that's the happy and the sad of it!
(Careful - You'll have to come back to this site by yourself.)
Monday, July 26, 2010
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.
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.
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.
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,
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.
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.
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.
Anyway you choose, surprise me.
Labels:
Alzheimer's Disease,
Communication,
Confusion,
Fear of the Future,
Grief,
Happiness,
Joy,
Sorrow
Thursday, July 22, 2010
Riding Low
I seem to have learned to ride with a constant level of "DOWN" because of G's continued slide (which will go on ad-infinitum, NO?) but I am "UP" about all of my creative endeavors, our friends and family, our home, daily activities, the summer, reading, watching movies and spending the good moments with G."
Wednesday, July 21, 2010
Summer Update
Periodically I send out an e-mail broadcast to family and friends to update them on how Gregory and I are doing with his Alzheimer's. By doing so, people for whom we care are able to keep up with the progress of the disease and be more responsive to Gregory (and me) when we get together. Some of the the people on the list live far away and do not get to visit too often so the update is a way to keep in touch with them as well. For the most part, I really dislike the usual "Christmas Letter" that is reproduced and sent out with the yearly card … but in this case, I think that this type of letter has a greater purpose. As I mention in the body of the e-mail below, we do value and appreciate the people in our life and their being on "The Path" with us is comforting and helpful to Gregory and to me.
Dear Friends,
Dear Friends,
Hi. Hope your summer is going well. For a change we have been enjoying an "at home" summer. No big trips planned or even anticipated at this time. Honestly, not sure if we have the energy or ability to do any big trips in the future … but also not ruling them out.
Gregory had a great July 4th birthday party with approximately 35 guests here for appetizers, drinks, fireworks, and birthday cake. With the help of artist Nancy Rosen, Gregory has begun a new "career" in oil painting, is quite good at it, and really enjoys what he is creating. The big "A," as I fondly call it continues to progress and we continue to review, reevaluate, regroup, rebalance, reorganize. Sounds like an Aretha Franklin Song (Re-Re-Re-Re.)
He continues to be happy, content, easy going and involved in life but also continues to decline in the areas of process skills, language retrieval, decision making, organization, planing, visual perception, making associations, follow through, and memory among others. Most of the time we get through what needs to be done and other times we have what I have labeled "Surprise Interactions." While HE IS NOT CRAZY, sometimes the behaviors, interactions, and communications ARE and it is all I can do to keep my sanity and/or tempter in dealing with them.
Michael has continued to reinvent himself through his artistic endeavors. If everything we know today comes true, there will be an opening reception of Michael's Museum at The Chicago Children's Museum on Navy Pier in March of 2011. "An Assembly of Assemblages" a show of approximately 25-30 of my purchased and found object assemblies in "boxes" in the style of Joseph Cornell will have an opening reception on June 2, 2011 at the municipal Village Hall in Lincolnwood, Il a suburb just next to Chicago.
I expect to be in "Carmen" again in September as a Supernumerary at The Lyric Opera of Chicago. I continue my creative non-fiction writing several hours a day, have been attending writers conferences, have joined a writers group, continue to work at becoming a published author, and have continued a close relationship with The Ragdale Foundation Artists Residency Program. For my 65th birthday, Gregory gave me a new camera and I have been honing my photography skills. Finally, I have been "promoting" myself via two web sites and three blogs. You can also find me on Facebook.
Below you will find direct links to the sites and blogs. Just click on them and you should be taken there. If you want to follow them, be sure to bookmark them on your browser so you can easily return. Also, please feel free to comment on the blogs. The more comments I get, the higher on the Google list I go, and when a potential publisher googles "Michael Horvich" they will get a good picture of who I am and how large my audience is.
Keep in touch. Always love to hear about you and your news! As always, Gregory and I appreciate your traveling the path with us.
Michael (and Gregory)
Sunday, July 18, 2010
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.
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.
Labels:
Alzheimer's Disease,
Confusion,
Fear of the Future,
Grateful
Friday, July 16, 2010
Remembering the Past, Enjoying the Present, Avoiding the Future
The Past. The Present. The Future. The future, the future, the future. Avoid it! Read about it. Educate yourself about it. Prepare for it. Do not deny it. Know it will come. But then, at all costs, avoid thinking about it!
Each person affected by Alzheimer's Disease performs their role predictably. The predictability is that each person will express their role in an individual, unique way. While general descriptors of the disease can be established, and while most often expected experiences can be discussed, each case is still a unique, creative experience.
While at the book store, I skim a book to see if it is one I want to own. I buy it. Then it sits on the shelf and gather's dust. Finally I am ready to learn more about the disease and I pick up the book and begin reading. I read and I learn. I read and I cry. I read and I fear for the future. And I put the book back on the shelf. And I again work at living in the present.
I have never completed any of the numerous books on Alzheimer's Disease that I own. It gets too depressing when you are looking at other people's situations and it is all too easy to begin to obsess about you and your partner's future with the disease. Which may or may not realize itself in any predicable way based on what you have read.
The reading has been useful, has taught me a lot, and to a certain degree has helped me understand the "present" of the disease and prepare for the future. More often I have come to my own conclusions about dealing with the day to day of the disease without the help of any of the books sitting on my shelf. The books have confirmed what I already knew, had already experienced, or had learned by doing of it.
The inherent problem with books on Alzheimer's Disease is that they talk about someone else's present, how their present became their future, and what to expect as the disease progresses. I get too overwhelmed and too depressed and my "present" begins to suffer. So I put the book down and while better armed for the future, I avoid thinking about it. I reaffirm that all one really has is the present. And I go on.
Labels:
Alzheimer's Disease,
Future,
Past,
Present
Wednesday, July 14, 2010
New Stages of Alzheimer's Disease
SUMMARY: There are currently approximately 5.3 million Americans with Alzheimer's Disease. This new way of looking at the big "A" includes criteria for three stages of the disease: preclinical disease (exists possibly ten+ years before any outward symptoms might,) mild cognitive impairment due to Alzheimer’s disease and, lastly, Alzheimer’s dementia (which would be viewed as the late stage in the disease.) This 3-way ID has large implications however there are still no drugs that alter the course of the disease, only slow it down.
The New York Times
The New York Times
July 13, 2010
Rules Seek to Expand Diagnosis of Alzheimer’s
By GINA KOLATA
For the first time in 25 years, medical experts are proposing a major change in the criteria for Alzheimer’s disease, part of a new movement to diagnose and, eventually, treat the disease earlier.
The new diagnostic guidelines, presented Tuesday at an international Alzheimer’s meeting in Hawaii, would mean that new technology like brain scans would be used to detect the disease even before there are evident memory problems or other symptoms.
If the guidelines are adopted in the fall, as expected, some experts predict a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease.
The changes could also help drug companies that are, for the first time, developing new drugs to try to attack the disease earlier. So far, there are no drugs that alter the course of the disease.
Development of the guidelines, by panels of experts convened by the National Institute on Aging and the Alzheimer’s Association, began a year ago because, with a new understanding of the disease and new ways of detection, it was becoming clear that the old method of diagnosing Alzheimer’s was sorely outdated.
The current formal criteria for diagnosing Alzheimer’s require steadily progressing dementia — memory loss and an inability to carry out day-to-day activities, like dressing or bathing — along with a pathologist’s report of plaque and another abnormality, known as tangles, in the brain after death.
But researchers are now convinced that the disease is present a decade or more before dementia.
“Our thinking has changed dramatically,” said Dr. Paul Aisen, an Alzheimer’s researcher at the University of California, San Diego, and a member of one of the groups formulating the new guidelines. “We now view dementia as a late stage in the process.”
The new guidelines include criteria for three stages of the disease: preclinical disease, mild cognitive impairment due to Alzheimer’s disease and, lastly, Alzheimer’s dementia. The guidelines should make diagnosing the final stage of the disease in people who have dementia more definitive. But, the guidelines also say that the earlier a diagnosis is made the less certain it is. And so the new effort to diagnose the disease earlier could, at least initially, lead to more mistaken diagnoses.
Under the new guidelines, for the first time, diagnoses will aim to identify the disease as it is developing by using results from so-called biomarkers — tests like brain scans, M.R.I. scans and spinal taps that reveal telltale brain changes.
The biomarkers were developed and tested only recently and none have been formally approved for Alzheimer’s diagnosis. One of the newest, a PET scan, shows plaque in the brain — a unique sign of Alzheimer’s brain pathology. The others provide strong indications that Alzheimer’s is present, even when patients do not yet have dementia or even much memory loss.
Dr. Aisen says he foresees a day when people in their 50s routinely have biomarker tests for Alzheimer’s and, if the tests indicate the disease is brewing, take drugs to halt it. That is a ways off but, he said, but “it’s where we are heading.”
“This is a major advance,” said Dr. John Morris, an Alzheimer’s researcher at Washington University in St. Louis who helped formulate the guidelines. “We used to say we did not know for certain it was Alzheimer’s until the brain is examined on autopsy.”
Dr. Ronald Petersen, an Alzheimer’s researcher at the Mayo Clinic in Minnesota and chairman of the Alzheimer’s Association’s medical and scientific advisory council, said adding biomarkers to a diagnosis would be a big improvement.
Today, he says, when a patient comes with memory problems, doctors might say that the person has a chance of developing Alzheimer’s in the next decade, a chance of not getting much worse for several years, and a chance of actually getting better.
Tests like brain scans, Dr. Petersen said, “will allow us to be much more definitive.” If the tests show changes characteristic of Alzheimer’s disease, a doctor can say, “I think you are on the Alzheimer’s road.”
That can be a difficult conversation, but it can allow patients and their families to plan. “At least it’s a conversation the physician can have with the patient,” Dr. Petersen said.
Alzheimer’s experts welcomed the new criteria.
“Over all, I think this is a giant step in the right direction,” said Dr. P. Murali Doraiswamy, a psychiatry professor and Alzheimer’s disease researcher at Duke University who was not involved with making the guidelines. “It moves us closer to the cause of the disease rather than just looking at symptoms.”
But, he added, it also is a huge change.
“This has implications for everybody alive, anybody who is getting older,” Dr. Doraiswamy said. Among other things, he said, it will encourage a lot more testing. And, Dr. Doraiswamy said, “diagnosis rates, like testing rates, only go in one direction — up.”
Doctors will have to learn new terms — preclinical Alzheimer’s; prodromal, or early stage, Alzheimer’s. Patients going to see a doctor with memory problems might be offered biomarker tests, which can be expensive.
The ripple extends beyond doctors and patients, Dr. Doraiswamy said. The new diagnostic criteria also have consequences for lawyers, insurance companies and workers’ compensation programs.
And, he said, people have to be prepared for unintended consequences, which always occur when the diagnosis of a disease is changed. For now, he said: “We ought to be cautious that we don’t stimulate all this testing before we can give people something to manage their disease. There is no point in giving them just a label.”
Sunday, July 11, 2010
A Birthday Card
John and Stuart sent Gregory a birthday card that really captures his persona. He commented on how "important" it was and decided to save the card. It is a quote by Oscar Wilde:
Life has been your art.
You have set yourself to music.
Your days are your sonnets.
Life has been your art.
You have set yourself to music.
Your days are your sonnets.
Saturday, July 10, 2010
Welcome to today...
Welcome to Today, Saturday July 10, 2010
A Play in Three Acts
ACT I
Scene: Gregory is sitting on stool in kitchen while I am watering plants.
G: What day of the week is this, Sunday?
M: No, tomorrow is Sunday. And yesterday was Friday. So what is today?
G: WOW, I REALLY am ahead of myself!
M: No, only one day behind. So what is today?
G: You tell me.
M: Saturday?
laughter
M: Do you know how much I love you? Without you I'd have nothing to write about!"
more laughter
ACT II
Scene: Lunch time and G's preparing a cold plate of tuna salad and raw veggies.
G: (calling out) How do I warm this up?
M: (going into the kitchen to see what "this" is) How do you usually make toast in the morning?
G: (points to toaster oven and begins to open door)
M: Try again.
G: (looks around) Oh! (pulls out regular toaster and continues preparing lunch)
ACT III
Scene: Kitchen after lunch. Gregory is cleaning his dishes.
G: (calling out again) What do I do with these pips? (Referring to the cherry pits and meaning where do they go: recycle, garbage can, garbage disposal.)
M: In the YUCK! (Affectionate nickname for "dirty garbage" vs "recycle")
G: OK
Curtain
A Play in Three Acts
ACT I
Scene: Gregory is sitting on stool in kitchen while I am watering plants.
G: What day of the week is this, Sunday?
M: No, tomorrow is Sunday. And yesterday was Friday. So what is today?
G: WOW, I REALLY am ahead of myself!
M: No, only one day behind. So what is today?
G: You tell me.
M: Saturday?
laughter
M: Do you know how much I love you? Without you I'd have nothing to write about!"
more laughter
ACT II
Scene: Lunch time and G's preparing a cold plate of tuna salad and raw veggies.
G: (calling out) How do I warm this up?
M: (going into the kitchen to see what "this" is) How do you usually make toast in the morning?
G: (points to toaster oven and begins to open door)
M: Try again.
G: (looks around) Oh! (pulls out regular toaster and continues preparing lunch)
ACT III
Scene: Kitchen after lunch. Gregory is cleaning his dishes.
G: (calling out again) What do I do with these pips? (Referring to the cherry pits and meaning where do they go: recycle, garbage can, garbage disposal.)
M: In the YUCK! (Affectionate nickname for "dirty garbage" vs "recycle")
G: OK
Curtain
Labels:
Alzheimer's Disease,
Communication,
Confusion,
Love
Thursday, July 8, 2010
In Between Times
It's the IN BETWEEN TIMES that matter the most and that let life go on, for both of us. While he is preparing his breakfast, making the bed, grooming himself, preparing a salad for lunch, working on his collage art project, reading a book and having his afternoon coffee, going for a walk, eating his dinner, cleaning up the dishes, watching a movie on TV, reading before bedtime, holding hands as we fall asleep. These are the good times, the times that make life seem normal.
It's the OTHER TIMES that also matter and cause life to limp in fits and starts, for both of us. When he can't explain what he wants to say and language fails him, forgets which is the knife and which is the fork and how to use them, heads towards his pancakes with the salt instead of towards the hash browns, goes to take out the garbage and leaves it behind on his way out the door, sees 70 degrees on the outside thermometer as only a number isn't sure how to dress. These are the bad times, the times that make life seem a little crazy.
It's the OTHER TIMES that also matter and cause life to limp in fits and starts, for both of us. When he can't explain what he wants to say and language fails him, forgets which is the knife and which is the fork and how to use them, heads towards his pancakes with the salt instead of towards the hash browns, goes to take out the garbage and leaves it behind on his way out the door, sees 70 degrees on the outside thermometer as only a number isn't sure how to dress. These are the bad times, the times that make life seem a little crazy.
Labels:
Alzheimer's Disease,
Communication,
Confusion,
Love
Tuesday, July 6, 2010
Total Eclipse of the Heart
Every now and then I find a song that I add to “Michael’s Down” playlist on my iTunes. When I get depressed or down enough to need a really good cry, I turn up the speakers and play the tunes on my playlist. Usually feel better after a good cry. If G is at home, I will go out for a walk, ear buds plugged in and iPhone in pocket. If it gets bad enough, I blast the speakers while he is at home and he gives me the space I need to grieve. Afterwards we hug and “make up.” I try not to do the latter too often because it feels like my being down is punishing him. But he knows I get down and it is better to admit it out loud, very loud, than try to cover my feelings with him knowing anyway. Here are the lyrics from one of the songs on my list. I'll share others in future blogs.
Total Eclipse of the Heart
Bonnie Tyler
(Turn around)
Every now and then I get a little bit lonely
And you're never coming 'round
(Turn around)
Every now and then I get a little bit tired
Of listening to the sound of my tears
(Turn around)
Every now and then I get a little bit nervous
That the best of all the years have gone by
(Turn around)
Every now and then I get a little bit terrified
And then I see the look in your eyes
(Turn around bright eyes)
Every now and then I fall apart
(Turn around bright eyes)
Every now and then I fall apart
(Turn around)
Every now and then I get a little bit
Restless and I dream of something wild
(Turn around)
Every now and then I get a little bit helpless
and I'm lying like a child in your arms
(Turn around)
Every now and then I get a little bit angry
And I know I have to get out and cry
(Turn around)
Every now and then I get a little bit terrified
And then I see the look in your eyes
(Turn around bright eyes)
Every now and then I fall apart
(Turn around bright eyes)
Every now and then I fall apart
And I need you now tonight
And I need you more than ever
And if you only hold me tight
We'll be holding on forever
And we'll only be making it right
'Cause we'll never be wrong
Together we can take it to the end of the line
Your love is like a shadow on me all of the time
(All of the time)
I don't know what to do and I'm always in the dark
We're living in a powder keg and giving off sparks
I really need you tonight
Forever's gonna start tonight
(Forever's gonna start tonight)
Once upon a time I was falling in love
Now I'm only falling apart
There's nothing I can do
A total eclipse of the heart
Once upon a time there was light in my life
But now there's only love in the dark
Nothing I can say
A total eclipse of the heart
(Turn around bright eyes
Turn around bright eyes)
(Turn around)
Every now and then I know you'll never be the boy
You always wanted to be
(Turn around)
But every now and then I know you'll always be the only boy
Who wanted me the way that I am
(Turn around)
Every now and then I know there's no one in the universe
As magical and wondrous as you
(Turn around)
Every now and then I know there's nothing any better
There's nothing that I just wouldn't do
(Turn around bright eyes)
Every now and then I fall apart
(Turn around bright eyes)
Every now and then I fall apart
And I need you now tonight
(And I need you)
And I need you more than ever
And if you only hold me tight
(If you'll only)
Well be holding on forever
And we'll only be making it right
(And we'll never)
'Cause we'll never be wrong
Together we can take it to the end of the line
Love is like a shadow on me all of the time
(All of the time)
I don't know what to do, I'm always in the dark
We're living in a powder keg and giving off sparks
I really need you tonight
Forever's gonna start tonight
(Forever's gonna start tonight)
Once upon a time I was falling in love
But now I'm only falling apart
Nothing I can do
A total eclipse of the heart
Once upon a time there was light in my life
But now there's only love in the dark
Nothing I can say
A total eclipse of the heart
A total eclipse of the heart
A total eclipse of the heart
(Turn around bright eyes
Turn around bright eyes
Turn around).
4…5…6...
Today is July 6 and this morning G asked about an event that was on our computer calendar for July 4, two days ago. It had to do with the anniversary of friends. On the computer calendar we mark anniversaries and birthdays by entering one name in red (birthday) or two names in red (anniversary.) We have been doing this ever since Operating System 10 for the Mac was introduced many years ago.
So after I answered G's question I probed a little further to see if I could figure out why he was asking. I couldn't tell if he didn't know the date, if he thought it was the 4th, if he just wanted to know what the "red" was, or what.
In my questioning he wondered out loud, "How did it get to be 6?" He gestured towards the closet in the bedroom where his "Day-At-A-Glance" calendar lives so I knew what he was talking about. "Maybe you didn't tear off yesterday's page?" I replied. Sure enough that calendar was still on the 5th. But I am not sure what this had to do with the computer, the anniversary, or the date.
If this writing seems convoluted to you, I have done that on purpose so you could experience the "flush" that comes over me in these situations where communication seems to have arrived from the Twilight Zone. It serves as a slap in the face to remind me that out situation is far from normal and of what the future holds in store for me as less a life partner and more a caregiver. Gregory IS NOT crazy but sometimes our interactions are.
Another purpose of this writing is to point out how difficult even the most easy, repetitious, everyday, since the beginning of time activity can become. Overwhelming, complex, and confusing for both the person with Alzheimer's and for those people who care.
Excuse me, I have to stop writing now as G is confused (again) over how to make the bed. The good thing is that I know what he needs and tomorrow he will probably remember how to do it by himself, or maybe not.
So after I answered G's question I probed a little further to see if I could figure out why he was asking. I couldn't tell if he didn't know the date, if he thought it was the 4th, if he just wanted to know what the "red" was, or what.
In my questioning he wondered out loud, "How did it get to be 6?" He gestured towards the closet in the bedroom where his "Day-At-A-Glance" calendar lives so I knew what he was talking about. "Maybe you didn't tear off yesterday's page?" I replied. Sure enough that calendar was still on the 5th. But I am not sure what this had to do with the computer, the anniversary, or the date.
If this writing seems convoluted to you, I have done that on purpose so you could experience the "flush" that comes over me in these situations where communication seems to have arrived from the Twilight Zone. It serves as a slap in the face to remind me that out situation is far from normal and of what the future holds in store for me as less a life partner and more a caregiver. Gregory IS NOT crazy but sometimes our interactions are.
Another purpose of this writing is to point out how difficult even the most easy, repetitious, everyday, since the beginning of time activity can become. Overwhelming, complex, and confusing for both the person with Alzheimer's and for those people who care.
Excuse me, I have to stop writing now as G is confused (again) over how to make the bed. The good thing is that I know what he needs and tomorrow he will probably remember how to do it by himself, or maybe not.
Labels:
Alzheimer's Disease,
Communication,
Confusion
Monday, July 5, 2010
Alzheimer Fact
A report from the Alzheimer’s Association released a few weeks ago, says the number of Americans age 65 and older who have the disease will increase from 5.1 million today to 13.5 million 40 years from now.
HERE IS A SITE YOU MIGHT LIKE TO VISIT
Sunday, July 4, 2010
Happy Birthday Gregory
July 4th. Today is the day that our Nation and Gregory celebrate their birthdays. In honor of Gregory everyone gets to take a day off of work and gets to watch fireworks.While not perfect, we celebrate being part of a great Nation and to those who know and love him, we celebrate Gregory
Saturday, July 3, 2010
Happiness
“Happiness is not a goal; it is a by-product.”
Eleanor Roosevelt, diplomat and author (1884-1962)
Happiness. A “by-product” of what? I find it difficult to wake up in the morning with a smile on my face, like my cat does as she opens her eyes each and every morning and purrs just to be awake. Life is a scary place out there. Religion seems to be helping fewer and fewer people. The food industry continues to pull the lamb chop wool over our eyes with false and misleading information if not downright lies. Politics and government continue the rhetoric and the race for the next election while doing little. Greed seems to be the bottom line of most financial endeavors. There is less oil with which to drive and more oil on the loose with which to kill aquatic animals and fish. People continue to do things to each other that range from nasty to evil.
So if happiness isn’t the goal, and sometimes it seems like it’s not even an option, of what is it a by-product? How about the possibility that one has to do the best one can do given the situation and the conditions we are faced with? How about the possibility that there is a lot of good out there that while not highlighted in the newspapers should be noticed and acknowledged? How about one act of faith, or one act of kindness, or one act of caring? How about an “I Love You” or a “Thank You” as often as possible to those around you.
Perhaps the by-product is how we perceive the “stuff” of our life and how we choose to think about it. How we choose to react to it. Can we not take things personally? Can we continue to be optimistic in the face of difficulties. Can we be grateful for what we have rather than obsess on what we do not have? Is our life half empty or half full?
Perhaps the best we can do is to be grateful for what we have (because it could get worse) and to know that in one minute we could have NOTHING, i.e. enter the great hooded, scythed Angel of Death. Perhaps the best we can do is realize that we already have happiness because it exists there inside of us and the choice is ours to acknowledge it or not. Perhaps the best we can do is act as though we are happy every morning just to see the sun rise, like my kitty does, and behave throughout the day as though we were happy? Then maybe one day we will wake up and realize that Happiness is ours.
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