What a better way to start the New Year than with this:
Saturday, December 31, 2011
Friday, December 30, 2011
New Language
Gregory has created a new language out of his Alzheimer's.
Whether it is too cold or too hot in the condo he asks for "another tick" on the furnace.
For breakfast he likes "thin thins" with honey meaning the new thin round bread that has appeared in the grocery stores.
He let me know "Michael, Ding, Ding, Ding" happened in the kitchen as the oven reached temperature and we could begin making some cookies.
Various waves of the hands try to narrow down his message.
When he needs help with the computer he announces, "It happened again!"
Showing is always easier than telling, which ironically is the professional writer's mantra.
"Over There" represents everywhere that isn't here. For example, he is looking forward to going over there (Mexico,) he saw a neighbor over there (in the lobby,) he wants to go over there for dinner (a restaurant we haven't been to for a while,) we need to call one of his friends over there (in California? ... John?)
"You know!" said urgently after his having tried to explain something but not being able to come up with any words at all, just huffs and puffs and hems and haws means, "Michael, please tell my story for me."
Sometimes we both get the giggles at the new language he comes up with and sometimes I cry.
Whether it is too cold or too hot in the condo he asks for "another tick" on the furnace.
For breakfast he likes "thin thins" with honey meaning the new thin round bread that has appeared in the grocery stores.
He let me know "Michael, Ding, Ding, Ding" happened in the kitchen as the oven reached temperature and we could begin making some cookies.
Various waves of the hands try to narrow down his message.
When he needs help with the computer he announces, "It happened again!"
Showing is always easier than telling, which ironically is the professional writer's mantra.
"Over There" represents everywhere that isn't here. For example, he is looking forward to going over there (Mexico,) he saw a neighbor over there (in the lobby,) he wants to go over there for dinner (a restaurant we haven't been to for a while,) we need to call one of his friends over there (in California? ... John?)
"You know!" said urgently after his having tried to explain something but not being able to come up with any words at all, just huffs and puffs and hems and haws means, "Michael, please tell my story for me."
Sometimes we both get the giggles at the new language he comes up with and sometimes I cry.
Saturday, December 24, 2011
Silence
Today's Daily Word addresses something I continue to work on in my relationship with Gregory. In an effort to "be his words, be his story, support his actions" I find that I continue to jump in too soon. If given a enough time, if given silence, he often is able to formulate his words or work out an action on his own.
In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.
Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.
So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.
At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.
With this Daily Word, I have that mantra: SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.
At least for now. At least until the game rules change again. I'll let you know how it works.
(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)
In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.
Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.
So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.
At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.
With this Daily Word, I have that mantra: SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.
At least for now. At least until the game rules change again. I'll let you know how it works.
(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)
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Friday, December 23, 2011
I Don't Mind (Really!)
We, Gregory and I, have a collection of seven (count them) seven Miniature Christmas Trees (approx 6" to 8" tall) decorated with miniature ornaments. They are lined up against the wall on the dining room table (which is in the living room) currently Christmas Central (usually Gregory's desk.)
We have had a number of small parties (more at homes) and one large party (friends, neighbors from the old neighborhood, and neighbors from the condo where we currently live) this holiday.
At these parties, Gregory gets to tell his stories (with great difficulty) and he enjoys being able to share. Usually I tell his stories but there are a few (a very few) that he is still able to tell (wave his arms at and stumble over.)
One of his stories (when we have company over) is to tell about (and show) his recent oil stick paintings. This is a new skill added since he has lost so many (like playing his piano or doing cross word puzzles.) He takes great joy in painting (loves his mentor artist Nancy) and enjoys sharing with our friends and family who sometimes offer to buy one (but he isn't ready to sell any yet.)
Another story is to point out (show) the line of variously sized and colored, heavy mercury ornaments which are hung (artistically) along the fire sprinkler pipe which runs across the living room (which is really The Great Room or the Loft Space.) He calls it (when he can remember the name) his Christmas Pipe.
Another story popped up recently (which was a surprise to me) but which I let pass. He was showing a guest the miniature Christmas Trees lined up on the desk/table and pointed to one saying, "This is my favorite. They (the miniature ornaments) are very old and belonged to my Grandmother. I love these the most and will never let them go.
I don't mind. Really I don't. Turns out that the miniature Christmas Tree with faded, antique, tiny round, multi colored ball ornaments to which he was referring (which Gregory and I have collected over the more than thirty five years we have been together) has now become something inherited from his Grandmother and which he will never let go. I was surprised. I am sad. But I understand (and I don't mind.) Really.
We have had a number of small parties (more at homes) and one large party (friends, neighbors from the old neighborhood, and neighbors from the condo where we currently live) this holiday.
At these parties, Gregory gets to tell his stories (with great difficulty) and he enjoys being able to share. Usually I tell his stories but there are a few (a very few) that he is still able to tell (wave his arms at and stumble over.)
One of his stories (when we have company over) is to tell about (and show) his recent oil stick paintings. This is a new skill added since he has lost so many (like playing his piano or doing cross word puzzles.) He takes great joy in painting (loves his mentor artist Nancy) and enjoys sharing with our friends and family who sometimes offer to buy one (but he isn't ready to sell any yet.)
Another story is to point out (show) the line of variously sized and colored, heavy mercury ornaments which are hung (artistically) along the fire sprinkler pipe which runs across the living room (which is really The Great Room or the Loft Space.) He calls it (when he can remember the name) his Christmas Pipe.
Another story popped up recently (which was a surprise to me) but which I let pass. He was showing a guest the miniature Christmas Trees lined up on the desk/table and pointed to one saying, "This is my favorite. They (the miniature ornaments) are very old and belonged to my Grandmother. I love these the most and will never let them go.
I don't mind. Really I don't. Turns out that the miniature Christmas Tree with faded, antique, tiny round, multi colored ball ornaments to which he was referring (which Gregory and I have collected over the more than thirty five years we have been together) has now become something inherited from his Grandmother and which he will never let go. I was surprised. I am sad. But I understand (and I don't mind.) Really.
Thursday, December 22, 2011
Holiday Time
(Disclaimer Below Entry)
We always look forward and are excited about the Christmas season. We decorate the house early and take it down late. We throw a large party (this year over 40 attended,) and a number of smaller ones. We bake cookies (this year over 20 dozen,) wrap presents (for family and support service people and just a few for each other,) go to the Christmas Kris Kringle Market downtown, have a few theater engagements, and eat out a little more often than usual.
On Christmas Eve we cook a special dinner at home and watch the George C. Scott version of "A Christmas Carol, open our presents, have cookies and tea. On Christmas Day we go to friends for dinner. We have friends in for New Year's Eve and look forward to a visit from our niece and nephew for a late Christmas sometime during the middle of January.
Disclaimer: It used to be WE, now it is I because Gregory is no longer able to help with planning, preparation, execution, and/or cleanup of all these events. I do get tired but also get extra sleep. I do get overwhelmed, but also try to keep the details simple. I do have my annual Christmas Cry but cheer up pretty quickly.
In all, it is well worth while because Gregory still enjoys the festivities and even thrives on them even though it is a little more difficult for me during the down time when he seems a little more confused. But the holidays still work for us so WE (read I) will hold on to them for as long as possible and simplify them as we go along and as necessary. Merry Christmas to all and to all a good night.
Friday, December 16, 2011
In The Moment: A Story in Four Acts with A Prologue and an Epilogue
PROLOGUE
You had to be in the room to appreciate what happened. You had to BE either Gregory or Michael to REALLY appreciate what happened. I can speak about what I experienced but can only imagine what Gregory experienced. When asked, the best he was able to reply was, "It was all of it."
ACT I: SETTING THE STAGE
Aaron, our "guest" researcher working on his doctorate dealing with a study of caregiving partnerships, joined us for the evening not only for further observations for his dissertation but also to help make Christmas cookies and to join us for dinner. He brought a bottle of wine. Red, full bodied, delicious.
Gregory and I have come to look forward to Aaron's visits and find him good company on many levels. He is a affable person, intelligent, and actually wants to hear what we (I) have to say about living with Alzheimer's.
I qualify here that Alzheimer's is an easy to use general term. Putting one's medical finger on exactly what is going on with Gregory and labeling the type of dementia is not obvious. Perhaps Frontal Lobe Dementia is more fitting based on my observations and limited knowledge of dementias. But most people know Alzheimer's and using the "label" makes it easier to discuss as well as easier to get medical services and support.
On my part besides having an evening's company, considering Gregory's difficulty with language, I find myself more and more in need of intelligent conversation outside of our relationship. Aaron helps provide this. So we discuss not only Alzheimer's but also world politics, the weather, Gregory and my relationship, our history, or families, etc.
Since Gregory decided to sell his piano over five years ago now, being unable to play due to Alzherimer's, he has been content to listen to music on CDs. Only two or three times in the five years has he mentioned that he missed being able to play. We listen to music every evening during dinner, more often on the weekend. We have listened to our beloved Chopin Ballad in G Minor, Op. 23 many, many times. I find myself whistling it when we are in the car, Gregory joins in, and we laugh and wonder why it comes to mind at any particular moment.
ACT III: THE LEADUP
Back to Aaron's visit. We chatted, had coffee and Christmas cookies which Gregory and I made a few days earlier. We laughed, we shared. We listened to Christmas music and made a batch of Vanilla and a batch of Chocolate Walnut Ball Cookies from my mother's recipe. Over a gross of cookies were made. We cleaned up and messed up again as I started dinner. Aaron, Gregory and I worked as a team throughout. I was chef, they were the sous chefs. It was fun and we worked together smoothly.
At dinner we talked of Gregory and my past, our present, a lot about Aaron's life, and about things worldly. We got back onto talking about Gregory's family and spent a lot of time talking about his childhood and his parents. When I say "we," you must understand that I mean "I." Now-a-days I am his words, I am his memories. But I know him so well after thirty five years that he might as well be the one talking. He nods with acknowledgement as I tell his story and does join in now and then with carefully thought out and carefully worked out additions.
Through the evening Gregory had shared some of his activities with Aaron; his paintings, a book he was reading, a jigsaw puzzle he is looking forward to working on after the holidays, a photograph or two. Mostly his sharing was by showing. With great difficulty she shared a memory or idea or two using words (with my help.)
After dinner, suddenly Gregory got all excited about something he wanted to share with Aaron. He couldn't organize his words so our "guessing game" began. Again, knowing Gregory as well as I do and based on the shape the evening had taken so far, I was able to figure out that he wanted me to play the Chopin Ballad that he had learned many years ago so Aaron could hear the magnificent piece.
As the music began, Gregory and Aaron were sitting on their stools by the kitchen island and I was sitting across from Gregory on a living room chair.
ACT IV: THE EVENT
Chopin's Ballade in G Minor, Op. 23 starts out slowly and quietly and then builds and builds with amazing complexity and crescendo. We all listened quietly and almost as soon as the music began, Gregory closed his eyes and began "remembering" the piece with his hands and body. Aaron observed, I watched. Gregory rocked with the music. His body reflected the peeks and valleys as well as the alternating calmness and intensity of the music. When the notes were high, he moved his hands treble-ward. When the notes were low, he moved his hands base-ward. When there was a trickle or wave of notes from one height to the next, Gregory's fingers would waggle in response. When there was a pause or breath, Gregory would pause or breath. When there was a strong point in the music, he would punctuate it with his finger or fist.
His eyes closed the entire time, although sometimes I could see the whites of his eyes as they fluttered, Gregory was no longer in the room with us. He was reliving the piece. He was sitting at his Grand Piano playing the piece. The look of concentration on his face, the look of joy, of bliss, of rapture told me that he was experiencing each note as he had spent so much time practicing and learning to play them.
I had to look away often because I was overwhelmed with emotion. I stifled sobs, I shed tears, I breathed deeply to avoid lamenting aloud and disturbing Gregory's reverie. Having regrouped myself, I would return to watching, with amazement, Gregory's performance. Then I would have to look away again, my eyes cold with evaporating tears, my body and lips quivering with the experience. Aaron sat quietly and watched ... and observed ... and took notes.
As I watched, I recalled the first time Gregory performed the piece, some fifteen or twenty years earlier at Chuck and John's Musicale, after having struggled and spent so much time learning it. I had to leave the room because I could not stand the suspense and perhaps terror of wondering if Gregory would be able to make it through the piece and not panic as he admittedly did sometimes in front of an audience. The performance was a spectacular success, note perfect. I think it was really a high point in his life.
This time I knew I would not leave the room, not only with the suspense and perhaps terror of how Gregory's current "performance" would end, but with the suspense of how I would survive it. When the last note was hit, and its vibration had ended, in the silence Gregory opened his eyes and began sobbing. I gave in to my emotions and let the tears and sobbing out as I got up and went to him. We hugged each other, shaking and sobbing and me whispering, "That was wonderful. It's OK. That was wonderful. It's OK."
EPILOGUE
Aaron went and got a box of kleenex from the guest bathroom and all three of us dried our eyes. Gregory and I had gone through an amazing experience. Aaron had not lived it as we had, but none-the-less was moved to tears. Later he asked, as the researcher in him dictated, if we could explain what happened. I was still so emotionally charged that I told him I didn't want to talk about it right then but certainly would be writing about it and would share that with him. Gregory's response was, ""It was ... (searching) ... all ... (searching) ... of it."
For me describing the experience is pretty clear. I felt that I was watching from the outside, something very precious and sacred going on in Gregory. I was feeling great joy and love watching him relive his moment of glory. I was amazed that he could remember each note, each bar, each section of the piece. It felt like the "old Gregory" was back with me and back for himself, for that brief ten minutes.
As well, I was grieving all that has been lost in these eight or so insidious, confusing, frustrating years of Alzheimer's. I was celebrating all that is still with us even through these trials. I was filled with sorrow as strong as my joy. I was able to acknowledge for myself that I have been able to help him to feel happy, content, purposeful, and safe through his losses. I was feeling guilty and renewing my resolve not to be impatient, frustrated, and at times mean and disrespectful. Most of all, there was something so magical, and strong, and spiritual about sharing this experience with this man whom I love more than life.
As far as what Gregory was experiencing, I can only surmise. He certainly was in the moment. Alzheimer's did not exist. He was in and of his music. He rode each note as Chopin has written them and as he had practiced them so long ago. He definitely was no longer in the room with us, he was in the music.
Reflecting how Gregory has been dealing with his cognitive losses, I believe that his tears after his "performance" most likely showed how joyful he was to once have been able to play his beloved piano, not grief of having lost the ability. I believe that for at least ten minutes, his entire life - childhood to manhood - became one unified joyful, celebrated memory without any of the frustrations of Alzheimer's and ... he cried with that joy.
You had to be in the room to appreciate what happened. You had to BE either Gregory or Michael to REALLY appreciate what happened. I can speak about what I experienced but can only imagine what Gregory experienced. When asked, the best he was able to reply was, "It was all of it."
ACT I: SETTING THE STAGE
Aaron, our "guest" researcher working on his doctorate dealing with a study of caregiving partnerships, joined us for the evening not only for further observations for his dissertation but also to help make Christmas cookies and to join us for dinner. He brought a bottle of wine. Red, full bodied, delicious.
Gregory and I have come to look forward to Aaron's visits and find him good company on many levels. He is a affable person, intelligent, and actually wants to hear what we (I) have to say about living with Alzheimer's.
I qualify here that Alzheimer's is an easy to use general term. Putting one's medical finger on exactly what is going on with Gregory and labeling the type of dementia is not obvious. Perhaps Frontal Lobe Dementia is more fitting based on my observations and limited knowledge of dementias. But most people know Alzheimer's and using the "label" makes it easier to discuss as well as easier to get medical services and support.
On my part besides having an evening's company, considering Gregory's difficulty with language, I find myself more and more in need of intelligent conversation outside of our relationship. Aaron helps provide this. So we discuss not only Alzheimer's but also world politics, the weather, Gregory and my relationship, our history, or families, etc.
ACT II: THE HISTORY
Gregory was quite animated as we talked about his family and his early years. At one point he excused himself and returned to show Aaron a photograph of his parents, Helen and Ed. Gregory took piano lessons, which while forced by his mother, he adored. Helen was a concert harpist and music played an important role in the Maire Family. When he went to college he gave up piano, probably in reaction to his mother's musical attentions and also in a move towards youthful independence.
He kept in storage the piano that had been passed on to him by his mother, reclaimed it when he and I first knew each other, and then passed it on to his niece Renee when we purchased a magnificent new Grand Piano for our first home together. I remember him "auditioning" pianos at the piano store with Helen and Renee in attendance. One piano with a beautiful voice and the perfect action found its new owner. Gregory was dedicated to his piano, practiced, studied, and became close to a concert pianist himself.
One day he sight played one or two pages of Chopin's Ballade in G Minor, Op. 23. We both fell in love with it and at my encouragement he decided to "tackle" the piece and learn (memorize) it. He probably spent five years doing so. The ten minute piece is very difficult and complex and the kind of music that someone like Artur Rubinstein would play as an encore after a magnificent concert at Carnegie Hall.
Slowly but surely, Gregory perfected the piece. He would always joke that, "You must be tired of listening to me "bang" through this." I always assured him that I thoroughly enjoyed listening to him practice and often would lay on the sofa and with my eyes closes, listen and drift. Finally, Gregory performed Ballad at a Musicale at friend's Chuck and John's home where, as was done in the Victorian Era, our "Gay Family" shared their performance talents for an evening's entertainment.
ACT III: THE LEADUP
Back to Aaron's visit. We chatted, had coffee and Christmas cookies which Gregory and I made a few days earlier. We laughed, we shared. We listened to Christmas music and made a batch of Vanilla and a batch of Chocolate Walnut Ball Cookies from my mother's recipe. Over a gross of cookies were made. We cleaned up and messed up again as I started dinner. Aaron, Gregory and I worked as a team throughout. I was chef, they were the sous chefs. It was fun and we worked together smoothly.
At dinner we talked of Gregory and my past, our present, a lot about Aaron's life, and about things worldly. We got back onto talking about Gregory's family and spent a lot of time talking about his childhood and his parents. When I say "we," you must understand that I mean "I." Now-a-days I am his words, I am his memories. But I know him so well after thirty five years that he might as well be the one talking. He nods with acknowledgement as I tell his story and does join in now and then with carefully thought out and carefully worked out additions.
Through the evening Gregory had shared some of his activities with Aaron; his paintings, a book he was reading, a jigsaw puzzle he is looking forward to working on after the holidays, a photograph or two. Mostly his sharing was by showing. With great difficulty she shared a memory or idea or two using words (with my help.)
After dinner, suddenly Gregory got all excited about something he wanted to share with Aaron. He couldn't organize his words so our "guessing game" began. Again, knowing Gregory as well as I do and based on the shape the evening had taken so far, I was able to figure out that he wanted me to play the Chopin Ballad that he had learned many years ago so Aaron could hear the magnificent piece.
As the music began, Gregory and Aaron were sitting on their stools by the kitchen island and I was sitting across from Gregory on a living room chair.
ACT IV: THE EVENT
Chopin's Ballade in G Minor, Op. 23 starts out slowly and quietly and then builds and builds with amazing complexity and crescendo. We all listened quietly and almost as soon as the music began, Gregory closed his eyes and began "remembering" the piece with his hands and body. Aaron observed, I watched. Gregory rocked with the music. His body reflected the peeks and valleys as well as the alternating calmness and intensity of the music. When the notes were high, he moved his hands treble-ward. When the notes were low, he moved his hands base-ward. When there was a trickle or wave of notes from one height to the next, Gregory's fingers would waggle in response. When there was a pause or breath, Gregory would pause or breath. When there was a strong point in the music, he would punctuate it with his finger or fist.
His eyes closed the entire time, although sometimes I could see the whites of his eyes as they fluttered, Gregory was no longer in the room with us. He was reliving the piece. He was sitting at his Grand Piano playing the piece. The look of concentration on his face, the look of joy, of bliss, of rapture told me that he was experiencing each note as he had spent so much time practicing and learning to play them.
I had to look away often because I was overwhelmed with emotion. I stifled sobs, I shed tears, I breathed deeply to avoid lamenting aloud and disturbing Gregory's reverie. Having regrouped myself, I would return to watching, with amazement, Gregory's performance. Then I would have to look away again, my eyes cold with evaporating tears, my body and lips quivering with the experience. Aaron sat quietly and watched ... and observed ... and took notes.
As I watched, I recalled the first time Gregory performed the piece, some fifteen or twenty years earlier at Chuck and John's Musicale, after having struggled and spent so much time learning it. I had to leave the room because I could not stand the suspense and perhaps terror of wondering if Gregory would be able to make it through the piece and not panic as he admittedly did sometimes in front of an audience. The performance was a spectacular success, note perfect. I think it was really a high point in his life.
This time I knew I would not leave the room, not only with the suspense and perhaps terror of how Gregory's current "performance" would end, but with the suspense of how I would survive it. When the last note was hit, and its vibration had ended, in the silence Gregory opened his eyes and began sobbing. I gave in to my emotions and let the tears and sobbing out as I got up and went to him. We hugged each other, shaking and sobbing and me whispering, "That was wonderful. It's OK. That was wonderful. It's OK."
EPILOGUE
Aaron went and got a box of kleenex from the guest bathroom and all three of us dried our eyes. Gregory and I had gone through an amazing experience. Aaron had not lived it as we had, but none-the-less was moved to tears. Later he asked, as the researcher in him dictated, if we could explain what happened. I was still so emotionally charged that I told him I didn't want to talk about it right then but certainly would be writing about it and would share that with him. Gregory's response was, ""It was ... (searching) ... all ... (searching) ... of it."
For me describing the experience is pretty clear. I felt that I was watching from the outside, something very precious and sacred going on in Gregory. I was feeling great joy and love watching him relive his moment of glory. I was amazed that he could remember each note, each bar, each section of the piece. It felt like the "old Gregory" was back with me and back for himself, for that brief ten minutes.
As well, I was grieving all that has been lost in these eight or so insidious, confusing, frustrating years of Alzheimer's. I was celebrating all that is still with us even through these trials. I was filled with sorrow as strong as my joy. I was able to acknowledge for myself that I have been able to help him to feel happy, content, purposeful, and safe through his losses. I was feeling guilty and renewing my resolve not to be impatient, frustrated, and at times mean and disrespectful. Most of all, there was something so magical, and strong, and spiritual about sharing this experience with this man whom I love more than life.
As far as what Gregory was experiencing, I can only surmise. He certainly was in the moment. Alzheimer's did not exist. He was in and of his music. He rode each note as Chopin has written them and as he had practiced them so long ago. He definitely was no longer in the room with us, he was in the music.
Reflecting how Gregory has been dealing with his cognitive losses, I believe that his tears after his "performance" most likely showed how joyful he was to once have been able to play his beloved piano, not grief of having lost the ability. I believe that for at least ten minutes, his entire life - childhood to manhood - became one unified joyful, celebrated memory without any of the frustrations of Alzheimer's and ... he cried with that joy.
Friday, December 9, 2011
Beep Beep Beep
Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.
Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.
I must be more careful to "signal when backing," BEEP BEEP BEEP.
Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.
I must be more careful to "signal when backing," BEEP BEEP BEEP.
Wednesday, December 7, 2011
Still I behave...
Still I behave as though Gregory does not have Alzheimer's. I get angry when he gets dumb. I take offense. I refuse to believe. I am rude and disrespectful. Maybe today I will change.
Today he wasn't able to "Please get me a kitchen towel from the guests bathroom." He confused the difference between "Yuck" garbage and "Recyle" garbage again. He tried to grab the hot cookie pan thinking he was helping. Couldn't look at a Lego block pattern, find the piece, and put it in place. Uses "him" when he means "her." Uses his hands more and more to facilitate his knife and fork. He forgot the steps involved in drying the dishes. Etc, etc, etc.
I did two things correctly today.
When he couldn't do the Lego blocks, I sat down next him and did them myself talking through each step. Later he said he had fun helping with the Legos.
We made Gregory's Great Grandma Barbara's Christmas Cookies this afternoon. He "remembered" them a week or so ago (talking around them until I was able to guess what he was talking about) and asked if we couldn't make them this year.
I bought the ingredients, laid out the cookie trays. I read the recipe and figured out the directions. I measured. I boiled. I sifted. I added ingredients. He mixed the dough. I formed the cookie balls. I pressed them with a glass. I put them in the oven. I timed them. I took them out and let them cool. I put them on the cooling rack. I piled the cool cookies on one tray. I put them in sealed container with sliced apples to cure until Christmas. I cleaned up after. He dried the clean items (after I talked him through how to dry.) WE had a fun time. I am tired. He is happy.
Today he wasn't able to "Please get me a kitchen towel from the guests bathroom." He confused the difference between "Yuck" garbage and "Recyle" garbage again. He tried to grab the hot cookie pan thinking he was helping. Couldn't look at a Lego block pattern, find the piece, and put it in place. Uses "him" when he means "her." Uses his hands more and more to facilitate his knife and fork. He forgot the steps involved in drying the dishes. Etc, etc, etc.
I did two things correctly today.
When he couldn't do the Lego blocks, I sat down next him and did them myself talking through each step. Later he said he had fun helping with the Legos.
We made Gregory's Great Grandma Barbara's Christmas Cookies this afternoon. He "remembered" them a week or so ago (talking around them until I was able to guess what he was talking about) and asked if we couldn't make them this year.
I bought the ingredients, laid out the cookie trays. I read the recipe and figured out the directions. I measured. I boiled. I sifted. I added ingredients. He mixed the dough. I formed the cookie balls. I pressed them with a glass. I put them in the oven. I timed them. I took them out and let them cool. I put them on the cooling rack. I piled the cool cookies on one tray. I put them in sealed container with sliced apples to cure until Christmas. I cleaned up after. He dried the clean items (after I talked him through how to dry.) WE had a fun time. I am tired. He is happy.
Saturday, December 3, 2011
Coffee Time
I have started Gregory on a cup of coffee every night at around 5:00. He never liked coffee and was more a Tea Person. The "Coffee at Five" has come about due to serve several purposes.
First, very often at sundown, people with Dementia go through was is known as "Sundowning." Why this occurs is not fully understood but maybe their mood and discomfort may be caused by an internal clock, by the change in light, by reflections in the window without the ability to discern "inside vs out."
Gregory automatically started the routine for himself of spending an hour or so reading or doing a jig saw puzzle that just happened to coincide with sundown. Because he is occupied, "Sundowning" does not seem to be a problem for him.
Second, I read an article a while back about the importance of caffeine in relation to dementia, and recently saw in November 2011's Weight Watcher's Magazine the following:
"Caffeine may do more than increase alertness. In fact, new research conducted by the Florida Alzheimer's Disease Research Center and the University of South Florida is showing promising results regarding caffeine and dementia - at least in animals. Mice bred to develop the rodent equivalent of Alzheimer's disease improved when given 500 mg of caffeine (about five small cups of coffee.) Although the research is still in its early stages, lead researcher Gary W. Arendash, PhD, is working toward determining if his findings may be of use to people at risk for the disease as well as for those who already have it."
Having seen this information previously (and now reinforcing to see it further confirmed) I introduced "Coffee Time" to Gregory's five o'clock routine a couple of years ago. Now "Coffee Time" around our home is important for both of us. It helps Gregory through the possibility of Sundowning, might help offset some of his dementia, and he as come to enjoy the flavor of coffee (with a few cookies.) It also helps give me the needed energy boost before I begin to set up for, cook, and clean up from dinner.
First, very often at sundown, people with Dementia go through was is known as "Sundowning." Why this occurs is not fully understood but maybe their mood and discomfort may be caused by an internal clock, by the change in light, by reflections in the window without the ability to discern "inside vs out."
Gregory automatically started the routine for himself of spending an hour or so reading or doing a jig saw puzzle that just happened to coincide with sundown. Because he is occupied, "Sundowning" does not seem to be a problem for him.
Second, I read an article a while back about the importance of caffeine in relation to dementia, and recently saw in November 2011's Weight Watcher's Magazine the following:
"Caffeine may do more than increase alertness. In fact, new research conducted by the Florida Alzheimer's Disease Research Center and the University of South Florida is showing promising results regarding caffeine and dementia - at least in animals. Mice bred to develop the rodent equivalent of Alzheimer's disease improved when given 500 mg of caffeine (about five small cups of coffee.) Although the research is still in its early stages, lead researcher Gary W. Arendash, PhD, is working toward determining if his findings may be of use to people at risk for the disease as well as for those who already have it."
Having seen this information previously (and now reinforcing to see it further confirmed) I introduced "Coffee Time" to Gregory's five o'clock routine a couple of years ago. Now "Coffee Time" around our home is important for both of us. It helps Gregory through the possibility of Sundowning, might help offset some of his dementia, and he as come to enjoy the flavor of coffee (with a few cookies.) It also helps give me the needed energy boost before I begin to set up for, cook, and clean up from dinner.
Friday, December 2, 2011
Apple Pie Too (2)
A response to the "Apple Pie" post from our niece Colleen. "Funny but not. But it made me think of a friend of ours recently who flew Delta to FL. The attendant asked him if he would like a snack and he said, “What are my choices?” Her reply, “Yes or No.”
Apple Pie
An old old story between Gregory and myself is about going into a diner and asking the waitress what kind of pie they had. She replied, "Yes."
A variation on this story is, "What kind of pie would you like Cherry? or Apple?" with a reply of "Yes."
Yesterday in the bathroom, I told Gregory that he should move his pills closer to his sink so he didn't forget to take them. He replied, "OK." and left the room.
A variation on this story is, "What kind of pie would you like Cherry? or Apple?" with a reply of "Yes."
Yesterday in the bathroom, I told Gregory that he should move his pills closer to his sink so he didn't forget to take them. He replied, "OK." and left the room.
Thursday, December 1, 2011
Reality
What they believe is their reality. Not yours.
Not the expected. Not the accepted.
Not the usual. Not the same day to day.
What they believe is their reality. Not the world's.
Not the expected. Not the accepted.
Not the usual. Not the same day to day.
What they believe is their reality. Not the world's.
Tuesday, November 29, 2011
Forks Over Knives
Interesting. We have been spontaneously "gravitating" towards more veggies, grains, and fruits and away from red meat, pork, and poultry. Not sure that we will ever be able to totally do away with "Food With Faces" but have cut way back.
This has helped me as well as Gregory. He has always eaten "healthy" and I attribute some of his slow decline to this. I have been eating more carefully over the last ten years or so and recently joined Weight Watchers to get down to my fighting weight.
Watched a great movie (on DVD) that deals with a move to vegetables and fruit and grains called "Forks Over Knives" by T. Colin Campbell, PhD and Caldwell B. Esselstyn, Jr. MD. (There is a companion book on Amazon.)
I need to make sure I am healthy and around for a long time to be able to be Gregory's Care Giving Partner. Thanks Zeyda.
This has helped me as well as Gregory. He has always eaten "healthy" and I attribute some of his slow decline to this. I have been eating more carefully over the last ten years or so and recently joined Weight Watchers to get down to my fighting weight.
Watched a great movie (on DVD) that deals with a move to vegetables and fruit and grains called "Forks Over Knives" by T. Colin Campbell, PhD and Caldwell B. Esselstyn, Jr. MD. (There is a companion book on Amazon.)
I need to make sure I am healthy and around for a long time to be able to be Gregory's Care Giving Partner. Thanks Zeyda.
Monday, November 28, 2011
My Little Boy
Just got home from a fun day with Gregory at Michael's Museum. Our massage therapist, her husband, and our new friend Aaron (who is also using us for part of his phd research on Care Giver Relationships) visited CCM and MM today and then we all went out to lunch.
When we arrived home I settled in to catch up on e-mails, paying bills, etc. Gregory seemed a little restless and was rummaging around so I asked, "Is everything Ok?"
He said, "Well, no."
"What's the problem?" I asked.
"I don't have anything to play with," was the response.
Turns out he recently finished his jig saw puzzles, cleaned off his desk to make room for the Christmas decorations, and is almost finished with the book he is currently reading. In his mind, and as he becomes more and more "my little boy," he felt that he didn't have anything to occupy his time, in other words, "I don't have anything to play with." Do you feel the beauty in this? I do. It is one of the gifts of Alzheimer's!
When we arrived home I settled in to catch up on e-mails, paying bills, etc. Gregory seemed a little restless and was rummaging around so I asked, "Is everything Ok?"
He said, "Well, no."
"What's the problem?" I asked.
"I don't have anything to play with," was the response.
Turns out he recently finished his jig saw puzzles, cleaned off his desk to make room for the Christmas decorations, and is almost finished with the book he is currently reading. In his mind, and as he becomes more and more "my little boy," he felt that he didn't have anything to occupy his time, in other words, "I don't have anything to play with." Do you feel the beauty in this? I do. It is one of the gifts of Alzheimer's!
Saturday, November 26, 2011
Conversations
Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
Thursday, November 17, 2011
Past the Puzzle Plateau
In a recent e-mail to our niece and nephew:
G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"
I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.
In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.
He just seemed to gain some insight into the process and seems to be making some progress.
Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.
G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"
I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.
In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.
He just seemed to gain some insight into the process and seems to be making some progress.
Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.
m
Wednesday, November 16, 2011
Acceptance
I have previously written a piece about "Acceptance" as it relates to Gregory's dementia. I felt that while I might "get used" to his Alzheimer's diagnosis and the changes and journey we have been on, I would never "accept" it.
Several years after I had written that piece, I looked more closely at "Acceptance" and redefined it for myself. I will post my previous writing again but first wanted to post this one.
It is a look at acceptance from one of the many times that the Daily Word has "spoken" to me with words of wisdom. As usual, I have adjusted it slightly (with cross outs and red additions) to fit my point of view. See what you think.
Several years after I had written that piece, I looked more closely at "Acceptance" and redefined it for myself. I will post my previous writing again but first wanted to post this one.
It is a look at acceptance from one of the many times that the Daily Word has "spoken" to me with words of wisdom. As usual, I have adjusted it slightly (with cross outs and red additions) to fit my point of view. See what you think.
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Tuesday, November 15, 2011
Today the Belt
I have been worried about Gregory loosing his cell phone because the holster can easily slip off his belt so this morning I showed him how to run the belt through the holster. That was approximately 6 hours ago.
Now after a day at painting class is needs to change his clothes but can't get the holster off and has no idea of how to make his belt work.
"Take your belt off." did not help. He just kept pulling on the cell phone holster and even on looking closely at it, could not see how the belt was looped through. I repeated, "Take the belt off." He got the belt off except for the last pant loop and the cell phone holster loops and still could not figure out what to do. I finally showed him.
He stared and replied, "I guess that was obvious." Obviously not.
Now after a day at painting class is needs to change his clothes but can't get the holster off and has no idea of how to make his belt work.
"Take your belt off." did not help. He just kept pulling on the cell phone holster and even on looking closely at it, could not see how the belt was looped through. I repeated, "Take the belt off." He got the belt off except for the last pant loop and the cell phone holster loops and still could not figure out what to do. I finally showed him.
He stared and replied, "I guess that was obvious." Obviously not.
Monday, November 14, 2011
The Lifelong Impact of Grief
Be where you are today. Whether you are feeling extreme sorrow, anger, sadness, or even tiny flashes of happiness as you experience some blessing of being alive, be with your present state. Observe each feeling with curiosity and compassion. You will not feel this feeling exactly the same way tomorrow or a year from now. It is how you feel today, right now. Let it be, with tenderness.
Saturday, November 12, 2011
Wishes
The ceiling fan smooth and silver
Circling round and round.
Smoothly, evenly, quietly.
Wish that I could.
The black framed pictures on the wall
Sitting behind the glass.
Safe, secure, protected.
Wish that I could.
The bedside table lamp
My clicking the switch.
Shining easily, brightly, freely.
Wish that I could.
The disease called Alzheimer’s
Fostering its insidious ways.
Reeking havoc each morning and evening
Wish that I could not.
Only the Loneliness
The table no longer gets set.
No knife.
No fork.
No napkin.
The water no longer gets filled.
No glasss.
No pitcher.
No ice.
I cook the dinner.
No deciding.
No help.
No support.
The table no longer gets cleared.
No washing.
No rinsing.
No drying.
Only the loneliness
Of doing it myself
With myself
For us.
Thursday, November 3, 2011
How It Feels to Have a Stroke
This TED presentation deals with Jill Bolte Taylor, brain scientist who witnessed her own stroke from the point of view of her profession. Does this have implications for Alzheimer's?
http://www.youtube.com/watch?v=UyyjU8fzEYU&feature=youtu.be
http://www.youtube.com/watch?v=UyyjU8fzEYU&feature=youtu.be
Friday, October 28, 2011
My Mantra & My Advice to Others
This is my mantra and my advice to others who are dealing with being a caregiver for whatever reason; be it an elderly parent, an ill life partner, the day to day relationship and needs of a spouse, a mother for her child as he grows up.
"Be good to yourself, take time for yourself, believe in yourself, all you really have is yourself!" (Michael A. Horvich 2011)
People would always say, "You need to take care of yourself." Had figure out what that meant in the middle of the continuous crisis that is Alzheimer's. Easy for them to say but you're the one in the middle of the cyclone. But one day you learn. As you will have to do for yourself.
You need to be selfish. Selfish doesn't mean selfish. It means SELFish. If you don't take care of yourself first, you will not have the energy, time, and/or spirit to take care of others. If you are in poor health you will not be able to help others. If you are frustrated and angry, you will not be able to be organized and calm.
I have learned. One day you will too!
"Be good to yourself, take time for yourself, believe in yourself, all you really have is yourself!" (Michael A. Horvich 2011)
People would always say, "You need to take care of yourself." Had figure out what that meant in the middle of the continuous crisis that is Alzheimer's. Easy for them to say but you're the one in the middle of the cyclone. But one day you learn. As you will have to do for yourself.
You need to be selfish. Selfish doesn't mean selfish. It means SELFish. If you don't take care of yourself first, you will not have the energy, time, and/or spirit to take care of others. If you are in poor health you will not be able to help others. If you are frustrated and angry, you will not be able to be organized and calm.
I have learned. One day you will too!
Thursday, October 27, 2011
From NPR
Improv For Alzheimer's: 'A Sense Of Accomplishment'
Many newly diagnosed Alzheimer's patients go through the stressful phase of realizing they are losing their memory while still having enough insight to know that, over time, they will no longer be able to care for themselves.
So a team of researchers from Chicago — a city known for improvisational theater — is testing a new idea of whether unscripted theater games can affect the well-being of these patients.
"Improv is all about being in the moment, which for someone with memory loss, that is a very safe place," says Mary O'Hara, a social worker at the Cognitive Neurology and Alzheimer's Disease Center at Northwestern University's Feinberg School of Medicine. "Maybe thinking about the past and trying to remember makes the person a little anxious or even a bit sad because their memory is failing. And maybe thinking about the future too much is also anxiety-provoking. So being in the moment is such a safe and a good place to be."
"There's no experience required, there's no script, there's no memorization," O'Hara says. "They bring to it just their creative potential. And they are so successful at this."The Northwestern researchers are working with the Tony Award-winning Lookingglass Theatre Company. There are already theater programs that use improv for Alzheimer's patients in the later stages of the disease, but this collaboration is unique because it's for early-stage patients.
Christine Mary Dunford, with Lookingglass, leads the group of novice performers in very simple improv games.
One "of the basic tenets of improv that [is] perfect for working with people with dementia [is] the concept of yes," Dunford says. "So, fundamental to all our work is that whatever answer someone comes up with, the rest of us are going to be able to work with it."
Researchers don't expect these games to stop or slow the progress of Alzheimer's disease, but they are investigating whether engaging the creative abilities of these early-stage patients improves their lives.
Before and after the eight-week program, participants and their families are asked a series of questions, checking to see how the course changes their answers.
"We're asking people to tell us how they're feeling about their physical health, their mood," says Darby Morhardt, a research associate professor at Northwestern. "How do they feel about their memory? How did they feel about their family, about their relationships? And also, how do they feel about their current situation as a whole and their life as a whole?"
"When we think of people with Alzheimer's and other dementia, we think about people who are losing skills on a daily basis," says improv coach Dunford. "But here, they're learning some new things, too.
It gives them a feeling of — a sense of self-confidence that they were able to accomplish this. And in this disease, there's not a lot of opportunity to feel a sense of accomplishment."
Update
I haven't been keeping anecdotal records nor sending out updates because usually the same things misconnect many times during a day, every day. When they misconnect differently it is usually a variation on the same theme. It all sucks! But at least it is a consistent. It SUCKs.
Same Unconscious Connections Kicking (SUCK) in.
Same Usual Chaos Kept (SUCK.)
Same Unconscious Connections Kicking (SUCK) in.
Same Usual Chaos Kept (SUCK.)
When Is It Time?
Gregory and I just had a conversation (if you can call mostly a monologue a conversation) about how we will know when it is time for him to live someplace other than in our home.
We had just had a poor interaction in which I said some things that I shouldn't have said having to do with threatening to send him "to a home" and that were hurtful to him. I apologized quickly. In short order I was calm, he was good and I again apologized saying (which I have said many times after a "fight") that our love for each other is never in question, that I am here for him, and I promised never ever to use the "going to a home" threat again. He thanked me.
"But," I said, "some time we need to talk about how we will know when it is time for you to live somewhere other than in our home."
I asked, "Have you ever thought about this before?"
"Yes," he replied.
"Can we talk about it now? Why haven't you ever talked to me about it." He replied that he didn't want to.
"I understand. It is a painful thing to talk about." I asked again if we could talk now about how we would know when it was time and he agreed that it would be a good thing.
"How will we know when it is time?"
He thought for a while and replied, "Well, it isn't for a long time yet."
We circled through that answer and my trying to get some more thoughts from him about 'when.' Never got there. Finally, he asked me, "Can you help me."
I explained that I had some ideas but had hoped to know what he thought. He was unable to gather any thoughts to share.
So I began, slowly and deliberately so he could follow, "I think that there are very few circumstances under which this decision will have to be made. Probably I (not we) will have to make it. Probably you will not be happy with the decision. But it will be the best, carefully thought out decision that I can make.
"First it would be time if I physically cannot take care of you anymore because I am unable to do so or because I cannot do a good job of taking care of your physical needs. If I had a short term illness I am sure our family and friends and maybe some hired help would be enough to let you stay at home. But any long term illness on my part would probably tell us that you need to be someplace that can take good care of you.
"Second is obvious, if I die before you.
"Third is if you become harmful to yourself or to me. One example is if you become violent. Another would be if you wander and I cannot keep track of you. If your behaviors cannot be protected like when you use a knife or medications inappropriately. Lots of things could be locked up ... but not everything.
He agreed with what I said. Soon after the tears stared, his first with mine following, and we hugged and rocked for a while. But we both readjusted fairly quickly and felt better, both agreeing that the conversation we had was an important one and glad that we had it. I again promised that I would never out of anger or frustration threaten to put him in a home again. He confined, "Never." Now we are getting ready to go out to dinner. Life continues.\
In writing this and proof reading it several days after the fact, I realize that our conversation had a bigger impact on me than it did on him. He is able to continue in his "fog" which is not always a bad place to be. I live with the eventual reality of the of having to make one of the most difficult decisions of my life. And I am sad.
We had just had a poor interaction in which I said some things that I shouldn't have said having to do with threatening to send him "to a home" and that were hurtful to him. I apologized quickly. In short order I was calm, he was good and I again apologized saying (which I have said many times after a "fight") that our love for each other is never in question, that I am here for him, and I promised never ever to use the "going to a home" threat again. He thanked me.
"But," I said, "some time we need to talk about how we will know when it is time for you to live somewhere other than in our home."
I asked, "Have you ever thought about this before?"
"Yes," he replied.
"Can we talk about it now? Why haven't you ever talked to me about it." He replied that he didn't want to.
"I understand. It is a painful thing to talk about." I asked again if we could talk now about how we would know when it was time and he agreed that it would be a good thing.
"How will we know when it is time?"
He thought for a while and replied, "Well, it isn't for a long time yet."
We circled through that answer and my trying to get some more thoughts from him about 'when.' Never got there. Finally, he asked me, "Can you help me."
I explained that I had some ideas but had hoped to know what he thought. He was unable to gather any thoughts to share.
So I began, slowly and deliberately so he could follow, "I think that there are very few circumstances under which this decision will have to be made. Probably I (not we) will have to make it. Probably you will not be happy with the decision. But it will be the best, carefully thought out decision that I can make.
"First it would be time if I physically cannot take care of you anymore because I am unable to do so or because I cannot do a good job of taking care of your physical needs. If I had a short term illness I am sure our family and friends and maybe some hired help would be enough to let you stay at home. But any long term illness on my part would probably tell us that you need to be someplace that can take good care of you.
"Second is obvious, if I die before you.
"Third is if you become harmful to yourself or to me. One example is if you become violent. Another would be if you wander and I cannot keep track of you. If your behaviors cannot be protected like when you use a knife or medications inappropriately. Lots of things could be locked up ... but not everything.
He agreed with what I said. Soon after the tears stared, his first with mine following, and we hugged and rocked for a while. But we both readjusted fairly quickly and felt better, both agreeing that the conversation we had was an important one and glad that we had it. I again promised that I would never out of anger or frustration threaten to put him in a home again. He confined, "Never." Now we are getting ready to go out to dinner. Life continues.\
In writing this and proof reading it several days after the fact, I realize that our conversation had a bigger impact on me than it did on him. He is able to continue in his "fog" which is not always a bad place to be. I live with the eventual reality of the of having to make one of the most difficult decisions of my life. And I am sad.
Thursday, October 20, 2011
Gentle as a Baby
Here is another UNITY message from the Daily Word that resonated with me:
Thursday, October 20, 2011
GENTLENESS
With a gentle spirit, I care for myself and others.
When I hold a newborn baby, I am gentle and caring. This new life is fragile and should be lovingly cared for. The same principle applies to myself and to others.
Today I focus on being gentle and kind. I am mindful of words and behaviors that might be rude or critical. In my interactions with others, I speak lovingly and quietly. I treat others with dignity and respect.
I am gentle with myself also. I slow my pace and take time to breathe. I walk with an ease of spirit and an awareness of God Life. I release worry or anxiety and see myself in a positive way. As I am gentle with myself and others, I find that my thoughts are peaceful and my life flows smoothly.
To speak evil of no one … to be gentle, and to show every courtesy to everyone.--Titus 3:2
Monday, October 17, 2011
Mariah
Mariah - also known as Little Bit, our American Short Hair with her smoke coat and sweetest disposition, after a month struggle with renal failure and old age died today. She will be missed.
Michael & Gregory
Thursday, October 13, 2011
Conjugation
Grammatical conjugation is the the variation of the form of a verb in an inflected language such as Latin, by which are identified the voice, mood, tense, number, and person. In Spanish an example of conjugation of the verb hablar (to speak) is hablo, hablas, habla, hablamos, hablais, hablan. Translated into English it is present tense I speak; you (informal speak;) you (formal) speak; he, she, or it speaks; we speak, you (plural informal) speak; they (you plural formal) speak.
One can do the same for past tense (hable,) I spoke; imperfect tense (hablaba,) I speak (over time;) future tense (hablare,) I will speak; subjective (hablara,) I will have spoken; etc.
In English, we are not as aware of verb conjugation because the verb changes very little and we use the pronoun to help. For example: to run: I run; you run; he, she, it runs; you (singular) run, we run, they run, they (plural) run. The verb form keeps to "run" or "runs." Much easier in English.
Sometimes I enjoy the nonsense of conjugating English words because you can conjugate them and it doesn't really matter to their use. This whole treatise lead me to a poem dealing with Gregory's Alzhiemer's. A long trip but here we are:
I walk
You walk
He walks
We walk
The path together.
Wednesday, October 12, 2011
Monday, October 10, 2011
Sunday, October 9, 2011
Wednesday, October 5, 2011
Response to "A New Observation"
This response arrived in my e-mail from my niece C.M.
This was my response to her response:
Loved (and appreciate) your response. You were able to cast a lighter "air" to it, which was greatly appreciated. In some ways you are right. What you don't witness is that he still wants to be vital, do things for himself, thinks he knows what he is doing, needs a level of independence and self respect. I cannot take that away from him which is what causes the dilemma in the first place.
I seem to remember an observation scale from my education days that went like this: NEVER, SELDOM, ONCE IN A WHILE, SOMETIMES. OFTEN. USUALLY. ALWAYS. And then that can be applied to "Ability to do something." and "Inability to do something." This is what makes Alzheimer's Disease (and any Dementia) so insidious.
Sometimes. Never. Usually. Whatever. Not possible:•) WHIMSICAL
The enabler in me says phuck it and just do everything for him to make the most stress free environment possible. But then the other side of that coin is the new stress it puts on you to do yet even more than you already do. But then it would be eliminating a different kind of stress so maybe there would be balance in that scenario. It seems to me during our last visit that more and more, Greg welcomes decisions being made for him.Sometimes. Never. Usually. Whatever. Love you more.
This was my response to her response:
Loved (and appreciate) your response. You were able to cast a lighter "air" to it, which was greatly appreciated. In some ways you are right. What you don't witness is that he still wants to be vital, do things for himself, thinks he knows what he is doing, needs a level of independence and self respect. I cannot take that away from him which is what causes the dilemma in the first place.
I seem to remember an observation scale from my education days that went like this: NEVER, SELDOM, ONCE IN A WHILE, SOMETIMES. OFTEN. USUALLY. ALWAYS. And then that can be applied to "Ability to do something." and "Inability to do something." This is what makes Alzheimer's Disease (and any Dementia) so insidious.
Sometimes. Never. Usually. Whatever. Not possible:•) WHIMSICAL
A New Observation
THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)
THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?
THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.
THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."
THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.
THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.
FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself up for trying.
Monday, October 3, 2011
Feline Alzheimer's
Cats, like their human companions, are living longer, and like people, can get diseases of old age such as arthritis, high blood pressure, kidney problems and dementia.
Read more at Suite101: Does Your Cat Have Alzheimer's?: 10 Symptoms of Feline Dementia | Suite101.com http://sue-cartledge.suite101.com/does-your-cat-have-alzheimers-a42499#ixzz1Zl8qmEjn
10 Clues that Your Cat Has Dementia
1. Spatial disorientation or confusion - getting trapped in corners or forgetting the location of the litter box. House-soiling is the most common reason for referral of old cats to animal behaviouralists.
2. Altered relationships either with their owners or other pets in the household - increased attention seeking or aggression
3. Increased irritability or anxiety, or decreased response to stimuli
4. Changes in sleeping patterns
5. Inappropriate vocalisation such as loud crying at night
6. Loss of memory, such as forgetting commands or breaking house training
7. Changes in activity - aimless wandering or pacing, or reduced activity
8. Lack of interest in food, although some cats actually want more food.
9. Decreased grooming
10. Confusion about time, such as forgetting that they have just been fed
Cats with CDS or feline dementia can still enjoy life if their symptoms are recognised early enough. Treatment options include:
- food fortified with antioxidants and vitamins,
- a stimulating environment with toys and playtimes with their favourite human
- medications prescribed by the vet.
However cats who have advanced dementia or CDS need to feel safe, and might not cope with changes to their food or routine that could frighten or confuse them.
Such cats should have a safe quiet space, perhaps just one room, where they can find everything easily and feel in control.
Dr Gunn-Moore also suggests applying synthetic feline appeasement pheromone to the cat’s rug or cushion can help to calm stressed or nervous animals.
Read more at Suite101: Does Your Cat Have Alzheimer's?: 10 Symptoms of Feline Dementia | Suite101.com http://sue-cartledge.suite101.com/does-your-cat-have-alzheimers-a42499#ixzz1Zl8qmEjn
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