Let me recount a beautiful but sad experience I had at 6:00 this morning. Since Gregory's illness has progressed, I have become a light sleeper. So this morning I was instantly aware that Gregory was awake. I couldn't tell if the noises he was making were laughter or crying.
"Are you OK?" I asked.
"No." he replied through his tears. "I miss her so. Do you know who I mean?"
I quickly thought of his mother, Helen, whose death anniversary is tomorrow. Maybe that is who he meant but our conversation took a different direction. Perhaps he was awake or just back from a dream. Either way I did not analyze.
"No, not my mother. My painting teacher. Nancy. I wish she would come back. I miss her so!" and he continued to whimper and sob. "Where is she?"
By now I was wide awake, on my elbow, holding his shoulders and we rocked. "She is in California at an art show. She'll be back. It will be OK. It will be Ok." And we rocked.
Tears began to run from my eyes, unasked and unannounced. It makes me so sad when he is sad. But I could only be there for him and lie by his sadness. Soon he calmed down, "I am OK now. Isn't that silly. I'm sorry."
"Don't apologize. No it isn't silly. I know you really miss Nancy. She'll be back soon."
I know how much he has been enjoying his new artistic endeavor painting with oils. I know how important his relationship with Nancy is. As she says, their time together needs no language and we seem to have a quiet ability to communicate, not necessarily with lots of words.
"Maybe I shouldn't say this but I have an idea for a piece. With all grays," he inserted into my thinking. Then, "Do you think I could take two or three pieces to the party?" he asked like a small boy would ask. He was referring to the Oscar Party we are going to tonight at Danny and David's. We have been doing this for some twenty years now.
"Perhaps that wouldn't be a good idea. We don't want to take the focus away from Danny and David. We could make a few smaller photographs of your paintings to carry in your wallet if you would like."
"That would be nice. This is so silly. I am sorry."
"Honey don't apologize. It's OK. Sometimes waking up from a dream can be difficult and strange."
"But not necessarily for kittens," he said as he petted our cat Mariah who was at his side, "Not necessarily for kittens."
Sunday, February 27, 2011
Friday, February 25, 2011
It Becomes Easier as it Becomes Harder
I may have written about this before but I think it is worth my working through again.
It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.
Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?
It seems that the more Alzheimer's takes away from Gregory the easier it is for me to cope. I become more aware that he is unable to deal with certain situations: language is usually a problem now so I get used to it, he is confused more often than not so confusion is expected, disruptions in his routine always affect his ability to function so I mobilize and help him through the change, when he begins to get frustrated his level of frustration escalates and causes his abilities to decline so I do not give him tasks that would frustrate him, he is able to help less so I do more.
Gregory continues to be happy, content, and to enjoy his life. The difficulties come when I can't cope, get frustrated or angry, loose my temper, get short with him, forget that he is not the person he used to be when we met thirty five years ago. And since I am more aware of his inabilities, I expect less, ask less, do more and feel better. Sounds strange doesn't it?
Tuesday, February 22, 2011
Ragdale Revisited
Last year at about this time I was accepted for a two week residency in creative non-fiction writing at The Ragdale Foundation in Lake Forest. Acceptance was by competitive application and it was quite an honor to be accepted into their artist residency program. I have decided to republish my journal from that experience on my "michael a. horvich writes" BLOG. I can tell you, it was quite a respite from being an Alzheimer's Caregiver and I learned a lot about myself and who I am today. If you are interested in following my time at Ragdale follow this link. it will be posting between February 20, 2011 and the middle of March: RAGDALE REVISITED
Sunday, February 20, 2011
Words In Common
What do the following words have in common: closet, fork, pocket, water, guest room, scarf, underwear, sandwich, cell phone, pillow, dish washer?
For most people the words have nothing in common but in Gregory and my world, the commonality is that they are all associations with meaning that do not work regularly anymore. There are many other words in the list which come and go and sometimes disappear forever.
The problem is two fold: 1) A thought is expressed with words, 2) Words trigger thoughts. Recently, neither are functioning predictably. Up until now Gregory's struggled with being able to pull the words to match his thinking, now hearing words does not pull the correct or any image in his thinking.
First his use and recall of language began to suffer. He was not always able to put words to his thoughts. The thoughts and memories still existed, perhaps like a photograph in his mind, but he was not able to describe that picture with words (a skill which you I and I take for granted.) Sometimes between the two of us, we are able to attach words to the picture and sometimes the picture fades before that is accomplished.
Now other people's use of language doesn't always work for him. He is increasingly not making associations between the spoken word and its referent. That seems to tell me that the pictures my still exist but in his mind but now the pictures do not have the cognitive labels they used to.
In the past, when he would hear the word "glove" he would see the image "glove" in his mind even though he might not be able to say the word "glove" when he was thinking about one. Now those associations are taking a new turn and increasingly he cannot do either on his own. Sometimes when I say "glove" he thinks "scarf," sometimes he thinks "glove," and sometimes he thinks nothing. When he is looking for his gloves he does not know what to call them. When I ask where his gloves are, he does not know what that means.
Again, with the passage of time,we become more and more aware that the rules of this game not only are constantly shifting, but most often do not exist. Go figure that one out!
For most people the words have nothing in common but in Gregory and my world, the commonality is that they are all associations with meaning that do not work regularly anymore. There are many other words in the list which come and go and sometimes disappear forever.
The problem is two fold: 1) A thought is expressed with words, 2) Words trigger thoughts. Recently, neither are functioning predictably. Up until now Gregory's struggled with being able to pull the words to match his thinking, now hearing words does not pull the correct or any image in his thinking.
First his use and recall of language began to suffer. He was not always able to put words to his thoughts. The thoughts and memories still existed, perhaps like a photograph in his mind, but he was not able to describe that picture with words (a skill which you I and I take for granted.) Sometimes between the two of us, we are able to attach words to the picture and sometimes the picture fades before that is accomplished.
Now other people's use of language doesn't always work for him. He is increasingly not making associations between the spoken word and its referent. That seems to tell me that the pictures my still exist but in his mind but now the pictures do not have the cognitive labels they used to.
In the past, when he would hear the word "glove" he would see the image "glove" in his mind even though he might not be able to say the word "glove" when he was thinking about one. Now those associations are taking a new turn and increasingly he cannot do either on his own. Sometimes when I say "glove" he thinks "scarf," sometimes he thinks "glove," and sometimes he thinks nothing. When he is looking for his gloves he does not know what to call them. When I ask where his gloves are, he does not know what that means.
Again, with the passage of time,we become more and more aware that the rules of this game not only are constantly shifting, but most often do not exist. Go figure that one out!
"In The Table" & "On The Wall"
Last night Gregory and I were featured artists at Jan and Jake's "In The Table Gallery." Jan wrote a wonderful BLOG about the event and instead of trying to do the job as well as she did, I have posted her entry:
In the Table/ On the Wall
Visit Michael’s Museum to find out more information about the upcoming opening at the Chicago Children’s Museum.
In a previous post, I described our new Amish built display table for our living room, which has allowed us to exhibit lots of items from our vast tchotchke collection. Playfully, but seriously, I suggested to my friend Michael that he have a show “in the table.” He has been collecting miniatures his entire life and now his collection, on permanent loan to the Chicago Children’s Museum (also in aprevious post), will open this May 13. But he is a consummate (and obsessive) collector and so has continued collecting since this donation. He would use the table.
His partner, Gregory, who was diagnosed with early onset of Altzheimers 10 years ago, has begun to paint, so Michael suggested that Gregory show his paintings as well. He would be “on the wall.”
Michael and Greg created Artist Statements about their work. An excerpt from Michael’s:
I have been a collector all my life…Unlike my other artistic endeavors which are usually orderly and symmetrical, if not balanced, “In the Table: A Display of Collected Items” invites the viewer to visually inspect, discover, and make sense of a disorderly array of unrelated items. The only thing they have in common is that they are all small. The contents of the table may be rearranged periodically during the reception.My installation was inspired by a visit to The Menil Collection in Houston where I saw a show called Witness. In a small, dark, but carefully lit room, were cases displaying actual and reproduced items with which the Surrealists surrounded themselves in their studios.…What inspired me in particular was a glass top coffee table, placed on a platform in one corner of the Witness exhibit, which had belonged to Mrs. Menil. It contained in no particular order, a huge array of items, each more interesting than the next. Her purpose was to inspire her visitors, adults and children, to play, discover, question, and learn from the items in the table…The collector in me was moved and wanted to both play with and to own Mrs. Menil’s table collection.
An excerpt from Gregory’s statement:
When I met Nancy Rosen…there was an instant connection…[A]n amazingly prolific and talented oil painter, [she] has taken me under her wing as I begin to develop my latest art form, working with oils.The paintings are on Stonehenge paper that has been roughly gessoed. I begin each piece by studying the rough surface of the paper in silent contemplation until it “speaks” to me. Then I paint and do not stop, or look at the work from afar, until I am finished with the piece. I automatically know when to begin and when to end a piece…The ideas just seem to come from within, I know not where exactly.
hanging the show
As I cleaned the house for the opening, I cleaned with real intention. I have never done that before, that is, clean with intention. Thoughts and memories of my 32 year old friendship with Michael and Greg filled me as I mopped, dusted, and even painted two walls. My intention in the cleaning of the house was a mantra to build constructive energy in the space of our home and to demonstrate my sincere love for the both of them. The house was flooded with light.
Last night at the opening, the energy was high and palpable. A wonderful mix of people (35-40 guests): friends of Michael and Greg’s, some of our friends, some of our son’s friends (and his new girlfriend, I might add), mutual friends. Good synergy. Diverse conversations and lots of places to explore and have them. We converted our son’s old room into a guest room/ gallery of JB’s and my work. Our studios were open and in the library upstairs, people played the theremin.
Boosted by the champagne cordials and other adult beverages, Michael and Greg held court with engaged admirers and supporters. The evening felt busy and electrically-charged. It was a wonderful feeling to be able to play host and create opportunities for others to have attention around their creative endeavors. It was wonderful to have a house that, inspired by this task, so easily adapted and grew creatively in its capacity to hold the tangible visions of others.
Gregory's GREEN SCRIBBLES, 25"X25", Oil on Gessoed Stonehenge Paper
Gregory's SHADES OF GRAY, 25"X25", Oil on Gessoed Stonehenge Paper
JB’s closeup photo of “in the table:”
Visit Michael’s Museum to find out more information about the upcoming opening at the Chicago Children’s Museum.Monday, February 14, 2011
Valentine's Day Part Two
Had a wonderful dinner at "The Pine Yard," a Chinese restaurant in our neighborhood that has delicious food. Now a movie and then our "Chocolate Volcanos" with vanilla ice cream.
Gregory was delighted with the red satin heart filled with Godiva Chocolates. If I behave he might let me have one or two.
The card he bought for me is touching. He was very pleased with himself and his selection. The card portrays two adorable rabbits, or are they mice, (G seems to think they are Bunnies) as seen from behind as they sit on a swing bench attached to the branch of a tree. They are arm in arm and leaning their heads together watching a sunset. The swing is next to their home, the same tree with its branch holding the swing. The colors are warm and soft and you can tell that love is in the air. The greeting inside says, "Your marriage is a true inspiration. Happy Anniversary. It is signed Greopry.
With the tear in my eye, can I tell you the card is beautiful, the sentiment is beautiful, my Gregory is beautiful.
Gregory was delighted with the red satin heart filled with Godiva Chocolates. If I behave he might let me have one or two.
The card he bought for me is touching. He was very pleased with himself and his selection. The card portrays two adorable rabbits, or are they mice, (G seems to think they are Bunnies) as seen from behind as they sit on a swing bench attached to the branch of a tree. They are arm in arm and leaning their heads together watching a sunset. The swing is next to their home, the same tree with its branch holding the swing. The colors are warm and soft and you can tell that love is in the air. The greeting inside says, "Your marriage is a true inspiration. Happy Anniversary. It is signed Greopry.
With the tear in my eye, can I tell you the card is beautiful, the sentiment is beautiful, my Gregory is beautiful.
Not All of One Part: In Four Acts with One Intermission
This has been a new adventure. Suddenly items with more than one part are causing Gregory some confusion. I will have to keep an eye on this.
ACT ONE:
Scene One: Book Mark
Scene Two: Book
Last night as we were finishing up reading, Gregory seemed to be having some trouble with his plastic, clip type bookmark. He asked me if I had another one like it and I asked why. "This just doesn't seem to work," he replied. Then after looking at the bookmark, this way and that, he said, "This may seem foolish, but I do not know how to make this work."
I demonstrated, two times on my book but and he still didn't get it. Then he realized that the reason he didn't understand how to use the bookmark is that he had put his book away and the bookmark by itself didn't make sense. Once he had his book in hand again, he was on the track.
ACT TWO:
Scene One: Electric Kettle
Scene Two: Electric Kettle Base
This morning a similar event took place. He came into the bedroom where I was working on my computer and while he couldn't explain in detail, he said something was wrong in the kitchen. I followed him in and he pointed to the electric tea kettle and said, "It doesn't seem to be working. I have the water but."
He had filled the kettle with water but it wasn't heating up. The reason it wasn't heating up is that he had placed the kettle on the counter next to the base but not ON the base. Obvious to me but not to him. Once he realized that one needed the water in the kettle AND the kettle needed to be on the base to heat the water, he was back on track.
INTERMISSION:
You may have noticed that a lot of these recent BLOG entries have been describing new things that have been going wrong, misfiring, short circuiting, causing me anguish. I feel like I have been spending a lot of time detailing Gregory's progression (regression?) and that the BLOG may seem like so much complaining. But things seem to be progressing (regressing?) at a faster rate. Hopefully it will slow down after a while.
Certainly the BLOG is one way of my dealing with our life and also a way of sharing our life with people who care and need to know. Right now, however, I am not sure how helpful this is being to other people dealing with Alzheimer's and other dementias. Let me just say that perhaps my experiences will help if only to show you that you are not alone. Hang in there. It will get worse. You will get better at dealing with the details.
ACT THREE:
Scene One: Water
Scene Two: Glass
Just now Gregory is a little distracted because the plumber is working on the kitchen sink. He asked me, pointing to the bathroom, "Can I get water in here?"
"Yes," I replied. He stood in the bathroom doorway not knowing what to do. His hand kept taking the shape of holding a glass but he looked around getting more confused. He left the room and paused in the hallway.
"Do you need a glass?" I asked.
"Yes."
"Here use this one." He came back taking the glass I had on my desk which was half filled with water. He wanted to fill it with more water but already forgot that he could get water in the bathroom so he headed for the kitchen where the plumber was working. I called him back and said, "You can get water in there," pointing towards the bathroom.
"Right," he said. Once in the bathroom however he did not know how to 'get water." It took him a real conscientious effort, thinking out loud, and finally he figured it out saying, "Of course!"
ACT FOUR:
Scene One: Helping
Scene Two: Typing
Scene Three: Worrying
Meanwhile I am being distracted helping Gregory, typing this BLOG, and wondering how much this plumber visit is going to cost me. Life goes on.
CURTAIN
ACT ONE:
Scene One: Book Mark
Scene Two: Book
Last night as we were finishing up reading, Gregory seemed to be having some trouble with his plastic, clip type bookmark. He asked me if I had another one like it and I asked why. "This just doesn't seem to work," he replied. Then after looking at the bookmark, this way and that, he said, "This may seem foolish, but I do not know how to make this work."
I demonstrated, two times on my book but and he still didn't get it. Then he realized that the reason he didn't understand how to use the bookmark is that he had put his book away and the bookmark by itself didn't make sense. Once he had his book in hand again, he was on the track.
ACT TWO:
Scene One: Electric Kettle
Scene Two: Electric Kettle Base
This morning a similar event took place. He came into the bedroom where I was working on my computer and while he couldn't explain in detail, he said something was wrong in the kitchen. I followed him in and he pointed to the electric tea kettle and said, "It doesn't seem to be working. I have the water but."
He had filled the kettle with water but it wasn't heating up. The reason it wasn't heating up is that he had placed the kettle on the counter next to the base but not ON the base. Obvious to me but not to him. Once he realized that one needed the water in the kettle AND the kettle needed to be on the base to heat the water, he was back on track.
INTERMISSION:
You may have noticed that a lot of these recent BLOG entries have been describing new things that have been going wrong, misfiring, short circuiting, causing me anguish. I feel like I have been spending a lot of time detailing Gregory's progression (regression?) and that the BLOG may seem like so much complaining. But things seem to be progressing (regressing?) at a faster rate. Hopefully it will slow down after a while.
Certainly the BLOG is one way of my dealing with our life and also a way of sharing our life with people who care and need to know. Right now, however, I am not sure how helpful this is being to other people dealing with Alzheimer's and other dementias. Let me just say that perhaps my experiences will help if only to show you that you are not alone. Hang in there. It will get worse. You will get better at dealing with the details.
ACT THREE:
Scene One: Water
Scene Two: Glass
Just now Gregory is a little distracted because the plumber is working on the kitchen sink. He asked me, pointing to the bathroom, "Can I get water in here?"
"Yes," I replied. He stood in the bathroom doorway not knowing what to do. His hand kept taking the shape of holding a glass but he looked around getting more confused. He left the room and paused in the hallway.
"Do you need a glass?" I asked.
"Yes."
"Here use this one." He came back taking the glass I had on my desk which was half filled with water. He wanted to fill it with more water but already forgot that he could get water in the bathroom so he headed for the kitchen where the plumber was working. I called him back and said, "You can get water in there," pointing towards the bathroom.
"Right," he said. Once in the bathroom however he did not know how to 'get water." It took him a real conscientious effort, thinking out loud, and finally he figured it out saying, "Of course!"
ACT FOUR:
Scene One: Helping
Scene Two: Typing
Scene Three: Worrying
Meanwhile I am being distracted helping Gregory, typing this BLOG, and wondering how much this plumber visit is going to cost me. Life goes on.
CURTAIN
Sunday, February 13, 2011
Rainer Maria Rilke
For one human being to love another is
perhaps the most difficult task of all
the epitome, the ultimate test.
It is that striving for which all other striving
is merely preparation.
René Karl Wilhelm Johann Josef Maria Rilke (1875 – 1926), better known as Rainer Maria Rilke, was a Bohemian Austian poet.
perhaps the most difficult task of all
the epitome, the ultimate test.
It is that striving for which all other striving
is merely preparation.
René Karl Wilhelm Johann Josef Maria Rilke (1875 – 1926), better known as Rainer Maria Rilke, was a Bohemian Austian poet.
Saturday, February 12, 2011
Mortality
Routine takes the edge off of mortality.
This line taken from "Nixon in China," the opera we just saw at Met at the Movies, seems to ring so true for my current life. Even with all the wonderful things happening with Michael's Museum, being in Carmen at The Lyric Opera of Chicago, waiting to hear from the publisher about my manuscript, so much to be grateful for. Ironic.
Composer-John Adams, Director-Peter Sellars
This line taken from "Nixon in China," the opera we just saw at Met at the Movies, seems to ring so true for my current life. Even with all the wonderful things happening with Michael's Museum, being in Carmen at The Lyric Opera of Chicago, waiting to hear from the publisher about my manuscript, so much to be grateful for. Ironic.
Composer-John Adams, Director-Peter Sellars
Friday, February 11, 2011
Valentine's Day
Ouch. This one was hard. You know how some people say, "If you have to be reminded it doesn't count?" Well I have decided that it does count. For Valentine's Day I bought Gregory a beautiful satin heart filled with Godiva chocolates. I didn't want him to feel badly that I remembered him for Valentine's Day and that he didn't remember me. Also I wanted to be remembered so I began to remind him a week early. "You have seven days to get me something for Valentine's Day." 6 ... 5 ... 4 ... 3... etc.
Today, he went out for his usual afternoon walk and without my reminding he stopped at the Barnes and Nobel and bought me a Valentine's Day Card (at least I think that is what he got, I will not know for sure until Monday.) I suggested he sign it and we could put it on the counter until Monday. He did not know what I meant. "It has been such a long time since I got anyone a card!" Then he got overwhelmed and began crying at not knowing what to do. While he sat on the bench, I held his head in my arms and we rocked together. When he calmed down we set about accomplishing this difficult adventure together.
He kept trying to take the card out of its bag but I explained, "I don't want to see it until Valentine's Day." I explained that one puts the name of the person on the envelope and writes a message inside the card. Based on the look on his face, I was not sure if he knew any of the words or concepts. I waited patiently while he did some heavy thinking, "I think I just want what's written inside." Maybe he did understand what I had said.
That was good enough for me so I sat him down at my computer desk, gave him a red pen, reached into the bag without looking (saying "I'm not looking.") and gave him the envelope on which to write my name.
"This is going to be hard," he said so I took a post-it note and wrote my name on it. With some coaching he was 80% able to copy my name from the post-it onto the envelope. Next I opened the card (still not looking but with a little peeking so I could see where he should sign his name and pointed. This time I wrote his name on a post-it so he could copy. It was more difficult for him copying his own name.
Finally we were finished, he sealed the envelope (with my prompting) and we put it on the counter with my gift for him to wait until Monday. We will go out for dinner and then after watching a movie at home I am making Fudge Brownie Volcanoes (the kind you warm up in the microwave so the center fudge melts and runs on cutting) with Ice Cream. It will be good.
Today, he went out for his usual afternoon walk and without my reminding he stopped at the Barnes and Nobel and bought me a Valentine's Day Card (at least I think that is what he got, I will not know for sure until Monday.) I suggested he sign it and we could put it on the counter until Monday. He did not know what I meant. "It has been such a long time since I got anyone a card!" Then he got overwhelmed and began crying at not knowing what to do. While he sat on the bench, I held his head in my arms and we rocked together. When he calmed down we set about accomplishing this difficult adventure together.
He kept trying to take the card out of its bag but I explained, "I don't want to see it until Valentine's Day." I explained that one puts the name of the person on the envelope and writes a message inside the card. Based on the look on his face, I was not sure if he knew any of the words or concepts. I waited patiently while he did some heavy thinking, "I think I just want what's written inside." Maybe he did understand what I had said.
That was good enough for me so I sat him down at my computer desk, gave him a red pen, reached into the bag without looking (saying "I'm not looking.") and gave him the envelope on which to write my name.
"This is going to be hard," he said so I took a post-it note and wrote my name on it. With some coaching he was 80% able to copy my name from the post-it onto the envelope. Next I opened the card (still not looking but with a little peeking so I could see where he should sign his name and pointed. This time I wrote his name on a post-it so he could copy. It was more difficult for him copying his own name.
Finally we were finished, he sealed the envelope (with my prompting) and we put it on the counter with my gift for him to wait until Monday. We will go out for dinner and then after watching a movie at home I am making Fudge Brownie Volcanoes (the kind you warm up in the microwave so the center fudge melts and runs on cutting) with Ice Cream. It will be good.
Remembering the Forgetting
Sometimes forgetting is good. Like this morning when Gregory asked me, "It needs to be fixed?"
I didn't remember that last night the TV and Cable Box were not communicating. He stood by my computer as I stopped working to listen while he tried to compose his thoughts.
I finally asked, "Can you show me?"
He said, "Yes" and I followed him into the TV room where he stood trying to remember what he wanted to tell me about.
Then I remembered the TV and all was well. "The TV?"
"Yes," he glowed!
I thanked him for reminding me and he felt good. All was well ... including my smiling loving face and my breaking heart.
I didn't remember that last night the TV and Cable Box were not communicating. He stood by my computer as I stopped working to listen while he tried to compose his thoughts.
I finally asked, "Can you show me?"
He said, "Yes" and I followed him into the TV room where he stood trying to remember what he wanted to tell me about.
Then I remembered the TV and all was well. "The TV?"
"Yes," he glowed!
I thanked him for reminding me and he felt good. All was well ... including my smiling loving face and my breaking heart.
Monday, February 7, 2011
Reality Test
Most often I try to anticipate Gregory's needs, especially as his language and communication abilities continue to disintegrate. Most often I am able to figure out what he wants to say or tell me. As I have written before, its those times that I cannot anticipate or guess that make for difficult interactions and therefore are emotionally heavy situations for both Gregory and me.
Another area of difficulty is Gregory's ability to make connections and associations. I will ask him to get me a new kitchen towel and he will not recognize word "towel." This has been happening more and more as his grasp of the meaning of any particular word continues to fail.
For example, as he is trying to ask me about where his gloves are, he will wiggle his hands but when I ask, "Are you looking for your gloves?" he will reply, "No." Even though it is his gloves he is looking for. Is it the disconnect of the word "No" or the word "Gloves." Sometimes that is clear to me and other times it is not.
Most difficult of all is when I feel that I have to "wait it out" and not help at all. Sometimes I feel the need to do a reality test to see exactly how much Gregory is going to be able to do. Last night I asked him, as I usually do, to set the table for dinner. He got the place mats and napkins done but forgot the silverware. He moved on to fill the water glasses.
He usually stands in front of the open refrigerator thinking about "what's missing." Then he will realize and shut the refrigerator, go to the cabinet, get out two glasses, and put them on the counter. Sometimes I will just say the word "glasses" and he will click in and proceed.
This time he stood in front of the open refrigerator for a long time. He looked over at where the empty glasses usually sit while waiting to be filled but it didn't help this time. Then he closed the refrigerator and opened the freezer. He pulled out the ice drawer and scooped out a handful of ice, turned towards the usual "where the glasses are waiting place" and stood, confused, hands cold with ice, not knowing what to do.
He looked at me several times and I soothingly replied, "I'm just being patient." Sometimes I will say, "I am just giving you space." This is to let him know that I am not upset or angry that he is confused.
Next he returned the ice to the drawer, closed it, and closed the freezer. He turned to me and said, "OK I give." I went to the cabinet hand handed him two glasses. He successfully took over from there. But what an ordeal. And watching the look on his face as he becomes increasingly confused (sometimes embarrassed, sometimes angry, sometimes just confused) is very painful for me.
Reality checks are no fun for me to suffer quietly and probably not easy for Gregory, but they are necessary so I can keep tabs on what he can do and what he cannot do with greater or lesser frequency. When it looks like the skill is really gone, I will not ask him to help with the skill or I will give a lot more support up front. For example, I am about to start handing him two glasses every time I ask him to get our dinner waters. Soon I'll have to put out the place mats, napkins, and silverware and hope he can figure out where it goes. Time will AND DOES tell!
Another area of difficulty is Gregory's ability to make connections and associations. I will ask him to get me a new kitchen towel and he will not recognize word "towel." This has been happening more and more as his grasp of the meaning of any particular word continues to fail.
For example, as he is trying to ask me about where his gloves are, he will wiggle his hands but when I ask, "Are you looking for your gloves?" he will reply, "No." Even though it is his gloves he is looking for. Is it the disconnect of the word "No" or the word "Gloves." Sometimes that is clear to me and other times it is not.
Most difficult of all is when I feel that I have to "wait it out" and not help at all. Sometimes I feel the need to do a reality test to see exactly how much Gregory is going to be able to do. Last night I asked him, as I usually do, to set the table for dinner. He got the place mats and napkins done but forgot the silverware. He moved on to fill the water glasses.
He usually stands in front of the open refrigerator thinking about "what's missing." Then he will realize and shut the refrigerator, go to the cabinet, get out two glasses, and put them on the counter. Sometimes I will just say the word "glasses" and he will click in and proceed.
This time he stood in front of the open refrigerator for a long time. He looked over at where the empty glasses usually sit while waiting to be filled but it didn't help this time. Then he closed the refrigerator and opened the freezer. He pulled out the ice drawer and scooped out a handful of ice, turned towards the usual "where the glasses are waiting place" and stood, confused, hands cold with ice, not knowing what to do.
He looked at me several times and I soothingly replied, "I'm just being patient." Sometimes I will say, "I am just giving you space." This is to let him know that I am not upset or angry that he is confused.
Next he returned the ice to the drawer, closed it, and closed the freezer. He turned to me and said, "OK I give." I went to the cabinet hand handed him two glasses. He successfully took over from there. But what an ordeal. And watching the look on his face as he becomes increasingly confused (sometimes embarrassed, sometimes angry, sometimes just confused) is very painful for me.
Reality checks are no fun for me to suffer quietly and probably not easy for Gregory, but they are necessary so I can keep tabs on what he can do and what he cannot do with greater or lesser frequency. When it looks like the skill is really gone, I will not ask him to help with the skill or I will give a lot more support up front. For example, I am about to start handing him two glasses every time I ask him to get our dinner waters. Soon I'll have to put out the place mats, napkins, and silverware and hope he can figure out where it goes. Time will AND DOES tell!
Saturday, February 5, 2011
No Day But Today (From Rent)
Another song lyrics that put things in perspective when I am feeling down. Makes me cry. Makes me feel better. I love him and he loves me!
NO DAY BUT TODAY
From "Rent"
As Sung by Idena Menzel
There’s only us, there’s only this
Forget, regret, or life is yours to miss
No other path, no other way
No day but today
There’s only us, only tonight
We must let go to know what’s right
No other road, No other way
No day but today
I can’t control my destiny
I trust my soul, my only goal
Is just to be
There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today
There’s only us, There’s only this
Forget, regret, or life is your’s to miss
No other road, no other way
No day but today
No day but today
(No day but today)
No day but today
(No day but today)
No day but today
(No day but today)
No day but today
NO DAY BUT TODAY
From "Rent"
As Sung by Idena Menzel
There’s only us, there’s only this
Forget, regret, or life is yours to miss
No other path, no other way
No day but today
There’s only us, only tonight
We must let go to know what’s right
No other road, No other way
No day but today
I can’t control my destiny
I trust my soul, my only goal
Is just to be
There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today
There’s only us, There’s only this
Forget, regret, or life is your’s to miss
No other road, no other way
No day but today
No day but today
(No day but today)
No day but today
(No day but today)
No day but today
(No day but today)
No day but today
I Was Wondering About The Cat . . .
We are having people in for dinner. I have been working all day on the meal and finally sat down to relax before the guests arrived. Gregory is standing in the middle of the room, holding the cat Mariah in his arms. He says, "I was wondering about the cat?"
"Wondering what about the cat?"
No reply.
"Do you mean that it is time to feed her? We have stopped feeding her at night."
"Of course. I know!" And he seemed done with the conversation.
So where do I go now? Button push. Bomb explode. Brain shatter. I realized that "he got me again." Or at least the Alzheimer's got me again. No matter how I respond now a days, I am wrong. No matter what I do, I am wrong. No matter how hard I try, I cannot win. Alzheimer's is the winner and champion.
If I guess at his meaning. I am wrong. If I guess at his direction. I am wrong. If I suggest. I am wrong. Button push. Bomb explode. Brain Shatter.
One of these days I'll figure out how to respond without making a committment. Something like "I think it is good to wonder about the cat, dear." or "I am glad you are wondering about the cat." "Wonder is good."
"Wondering what about the cat?"
No reply.
"Do you mean that it is time to feed her? We have stopped feeding her at night."
"Of course. I know!" And he seemed done with the conversation.
So where do I go now? Button push. Bomb explode. Brain shatter. I realized that "he got me again." Or at least the Alzheimer's got me again. No matter how I respond now a days, I am wrong. No matter what I do, I am wrong. No matter how hard I try, I cannot win. Alzheimer's is the winner and champion.
If I guess at his meaning. I am wrong. If I guess at his direction. I am wrong. If I suggest. I am wrong. Button push. Bomb explode. Brain Shatter.
One of these days I'll figure out how to respond without making a committment. Something like "I think it is good to wonder about the cat, dear." or "I am glad you are wondering about the cat." "Wonder is good."
Thursday, February 3, 2011
Write Don't Talk! Or At Least Speak Plainly and Simply
These are a few wonderful tips from an article in the Blue Cross Blue Shield newsletter. We rely on speech so strongly that when a person with Alzheimer's is unable to use language times get rough. A suggestions for people with advanced dementia is to write a simple, brief note using large letters to communicate. Have the person read the note and see the response.
Also creating a "Memory Book" with pictures of family helps to unlock stored memories that a person with Alzheimer's just can't get out in a chat. It's not that the person has forgotten, they just need help with remembering. Creating a book with commonly needed objects or activities is another way to communicate.
Neither of these techniques are necessary yet with us but they are good to keep in mind. With Gregory, I have found that simple sentences, spoken slowly (but not insultingly,) after I have Gregory's attention usually do the job. One or two ideas at a time is the most he can handle when I ask him to do something.
I have made signs to help him remember including: 1) by the table near the front door where we keep our pocket stuff - FOR YOUR POCKET - wallet, keys, cell phone, Chapstick, etc. 2) On a shelf in the closet by the front door is a list: COAT, SCARF, GLOVES, EARMUFFS? 3) On the inside of one of the kitchen cabinets is a sign with a column for each day of the week and pictures of what to have for breakfast on each day. This helps Gregory alternate cereals, sausage or fish, toast or muffin. Sometimes I will write a simple note on a POST-IT and hang it on his bathroom mirror, paste it to this bedside table, or stick it to his breakfast tray.
Today these techniques work, tomorrow they may not so we will develop new ones. One day at a time!!!
Also creating a "Memory Book" with pictures of family helps to unlock stored memories that a person with Alzheimer's just can't get out in a chat. It's not that the person has forgotten, they just need help with remembering. Creating a book with commonly needed objects or activities is another way to communicate.
Neither of these techniques are necessary yet with us but they are good to keep in mind. With Gregory, I have found that simple sentences, spoken slowly (but not insultingly,) after I have Gregory's attention usually do the job. One or two ideas at a time is the most he can handle when I ask him to do something.
I have made signs to help him remember including: 1) by the table near the front door where we keep our pocket stuff - FOR YOUR POCKET - wallet, keys, cell phone, Chapstick, etc. 2) On a shelf in the closet by the front door is a list: COAT, SCARF, GLOVES, EARMUFFS? 3) On the inside of one of the kitchen cabinets is a sign with a column for each day of the week and pictures of what to have for breakfast on each day. This helps Gregory alternate cereals, sausage or fish, toast or muffin. Sometimes I will write a simple note on a POST-IT and hang it on his bathroom mirror, paste it to this bedside table, or stick it to his breakfast tray.
Today these techniques work, tomorrow they may not so we will develop new ones. One day at a time!!!
Saturday, January 29, 2011
If I haven't already given you an idea...
If I haven't already given you an idea of what it is like to live with someone afflicted by Alzheimer's here is yet another story. (I'm being light with this opening. Don't take offense. It cheers me up and makes me feel like I am "joking" with you.)
After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."
He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.
Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.
I took the stainless basket, put it in place over the drain and asked, "Does this look better."
"Yes, I am home now. Thanks."
So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc
To be continued... (I am sure.)
After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."
He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.
Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.
I took the stainless basket, put it in place over the drain and asked, "Does this look better."
"Yes, I am home now. Thanks."
So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc
To be continued... (I am sure.)
Thursday, January 27, 2011
The Enlightened Heart
Last night Gregory pointed to three words in a poem he was reading in the book The Enlightened Heart. He wanted me to make a sign so he could post it on the side of his bedside table. Today we tried to find the author and title of the poem but we couldn't. Will keep looking and repost if we find it. FOUND IT! From a poem by Lao-Tsu 571B.C in a book edited by Stephen MitchellMeanwhile, I think it is very telling that he chose these three words as important: SIMPLICITY, PATIENCE, COMPASSION. Every night before he turns out the lights, he reads those three words aloud. Moving?
Wednesday, January 26, 2011
The Hats I Wear: Part 1
When we visit the doctor, I wear all of the hats that are needed. Gregory and I have always been open with each other (Gregory now a days as much as his language allows him to be.) While I have told a few white lies or selectively forgotten to inform him of something, we always discuss everything about our situation and I include him in all decisions if only to tell him "I have decided..."
I keep anecdotal notes and print them out when we go to the doctor. I do most of the talking and let Gregory join in when he attempts to do so. Our doctors treat him with respect and always begin by addressing their questions directly to Gregory knowing I will "chime in" as necessary. When I am having to talk to the doctor about difficult issues (dealing with Gregory Alzheimer's and its progression) I will often appologize to Gregory for talking about him as if he wasn't there. At the point when I need to talk about issues that I do not want Gregory to know about, to help preserve his happy bliss, I will call the doctor ahead of time and discuss the issues privately.
Gregory continues to accept my support graciously and to trust himself and his care to me. In fact he trusts me unconditionally (may it last forever) with his life.
Monday, January 24, 2011
Milestone
I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I am no longer angry when he does
Things that seem so "stupid."
I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I really understand now
That he can't help it, he isn't able.
I have passed over the next milestone.
Not good nor bad but a relief.
Really understand that he can no longer
Make the connections that are needed.
I have passed over the next miestone.
Not good nor bad but a relief.
I seem better able to support him
And to be respectful, loving, and kind.
I have passed over the next milestone.
Not good nor bad but a relief.
He has passed over the next milestone and remains content
and that is good and that is a relief.
Not good nor bad but a relief.
For some reason I am no longer angry when he does
Things that seem so "stupid."
I have passed over the next milestone.
Not good nor bad but a relief.
For some reason I really understand now
That he can't help it, he isn't able.
I have passed over the next milestone.
Not good nor bad but a relief.
Really understand that he can no longer
Make the connections that are needed.
I have passed over the next miestone.
Not good nor bad but a relief.
I seem better able to support him
And to be respectful, loving, and kind.
I have passed over the next milestone.
Not good nor bad but a relief.
He has passed over the next milestone and remains content
and that is good and that is a relief.
Sunday, January 23, 2011
A Very Narrow Approach
Today I am entertaining an acquaintance who is thinking of moving into downtown Evanston. She wanted my take on living here so I invited her over for some home made banana walnut bread and a cup of coffee.
She knows Gregory. I suggested that he be here for the beginning of the visit but that he take himself out to lunch after a while. The timing of her visit cuts into his lunchtime. Also, he would probably not enjoy sitting around for the few hours while my guest and I chat.
I suggested he could have lunch at Pot Belly or Lulu's, both of which are within a block of the condo and ones with which he might be comfortable going to on his own. He replied, "Don't worry, I'll find food." I am worried.
Then he said, "You know I think I will eat at that place .... No, never mind because I can't think of the name .... You know its on the street ... at the end of the block .... way down there."
I asked, "What kind of food do they serve?"
"The usual," he replied.
I couldn't pass up the opportunity to comment, "Well that narrows it down quite a bit." Gregory got the joke and we both laughed.
Then he continued. "You know .... We ate there .... Once .... Don't worry I'll find food."
She knows Gregory. I suggested that he be here for the beginning of the visit but that he take himself out to lunch after a while. The timing of her visit cuts into his lunchtime. Also, he would probably not enjoy sitting around for the few hours while my guest and I chat.
I suggested he could have lunch at Pot Belly or Lulu's, both of which are within a block of the condo and ones with which he might be comfortable going to on his own. He replied, "Don't worry, I'll find food." I am worried.
Then he said, "You know I think I will eat at that place .... No, never mind because I can't think of the name .... You know its on the street ... at the end of the block .... way down there."
I asked, "What kind of food do they serve?"
"The usual," he replied.
I couldn't pass up the opportunity to comment, "Well that narrows it down quite a bit." Gregory got the joke and we both laughed.
Then he continued. "You know .... We ate there .... Once .... Don't worry I'll find food."
Work
Some people get up every morning and go to WORK. This may seem over simplistic to you, but bare with me.
WORK is part of their life and they get paid for it. After WORK, they go home and get on with living their life. The money they earn at WORK is what helps them pay for what they need to live; food, shelter, clothing, health care, entertainment, etc.
(A caveat here: Some people WORK several jobs. Some people not only WORK several jobs but also have a family to raise. Therefore some do not have a lot of time to enjoy life let alone have enough money to provide the things their family needs.)
For some people WORK is living other people's lives. Nurses, doctors, home health care workers, rehab personnel, assisted living center staff, personal secretaries of the wealthy, Barak Obama's aids, etc. They get up every morning (or pm or night shift) and go to WORK. They spend their time at WORK making sure other people are safe, clean, comfortable, fed, entertained, etc. Then they go home and live their own life.
You get my point here. This morning after yet another "glitch" in Gregory's memory, I began thinking about the fact that my life has become the WORK of making sure Gregory is safe, clean, comfortable, fed, entertained, etc. While I do not get paid for my services (which are provided out of love) and while my WORK is 24/7, I still try to find some time to take care of myself and live my own life. Not easy.
As Gregory's personal, cognitive, emotional, and physical skills ebb and flow, as the "rules of the game" continue to change or at times do not exist, my WORK gets more difficult. And while I cannot imagine my life without him, I cannot begin to imagine how I will be able to continue to provide for his needs as they become not only more and more demanding, but as they become more and more cloud like. By this I mean undefinable, unidentifiable, non understandable. I know that I have options but meanwhile I have to get on with the day to day activities that support our life and try to deal with the emotions that overwhelm when the vail parts and I see the future.
At the same time I must mention that Gregory commented last night as we were drifting of to sleep, "I love my live." And while it is 18 degrees outside our condo is warm, our pantry is stocked, our bills are paid, our friends and family are supportive, our health is good, our life is good.
WORK is part of their life and they get paid for it. After WORK, they go home and get on with living their life. The money they earn at WORK is what helps them pay for what they need to live; food, shelter, clothing, health care, entertainment, etc.
(A caveat here: Some people WORK several jobs. Some people not only WORK several jobs but also have a family to raise. Therefore some do not have a lot of time to enjoy life let alone have enough money to provide the things their family needs.)
For some people WORK is living other people's lives. Nurses, doctors, home health care workers, rehab personnel, assisted living center staff, personal secretaries of the wealthy, Barak Obama's aids, etc. They get up every morning (or pm or night shift) and go to WORK. They spend their time at WORK making sure other people are safe, clean, comfortable, fed, entertained, etc. Then they go home and live their own life.
You get my point here. This morning after yet another "glitch" in Gregory's memory, I began thinking about the fact that my life has become the WORK of making sure Gregory is safe, clean, comfortable, fed, entertained, etc. While I do not get paid for my services (which are provided out of love) and while my WORK is 24/7, I still try to find some time to take care of myself and live my own life. Not easy.
As Gregory's personal, cognitive, emotional, and physical skills ebb and flow, as the "rules of the game" continue to change or at times do not exist, my WORK gets more difficult. And while I cannot imagine my life without him, I cannot begin to imagine how I will be able to continue to provide for his needs as they become not only more and more demanding, but as they become more and more cloud like. By this I mean undefinable, unidentifiable, non understandable. I know that I have options but meanwhile I have to get on with the day to day activities that support our life and try to deal with the emotions that overwhelm when the vail parts and I see the future.
At the same time I must mention that Gregory commented last night as we were drifting of to sleep, "I love my live." And while it is 18 degrees outside our condo is warm, our pantry is stocked, our bills are paid, our friends and family are supportive, our health is good, our life is good.
Saturday, January 22, 2011
Alert 1
Well, I've done it. "I've fallen and I can't get up." Read on...
As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.
Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...
Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.
So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.
When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"
I answered, "Yes I am testing the system."
"Am I speaking to Michael?" (On their records because I am listed as the "primary user."
"Yes."
"Is Gregory alright also?"
"Yes."
"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."
Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.
As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.
Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...
Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.
So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.
When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"
I answered, "Yes I am testing the system."
"Am I speaking to Michael?" (On their records because I am listed as the "primary user."
"Yes."
"Is Gregory alright also?"
"Yes."
"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."
Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.
Coming Faster
This morning's conversation so far (48 minutes and counting.)
I asked G to bring his computer into my office so I could clean the screen. He did so. As I sprayed the screen and proceeded to wipe it clean, I explained that I had laid the screen flat so the cleaning solution wouldn't run into the computer.
G: "Could you do that for me?"
I look at him inquiringly.
G: "Oh, you are."
He came into the room and asked "What is today about?"
"Did you check the calendar on your computer to see?" I asked.
"No but I will." he replied.
A few minutes later I asked him what he had found out about today.
He thought for a few minutes and replied, "There was a long line of items but nothing I could tell."
We went to look at his computer together. He had been looking at his e-mail.
I showed him how to get to the calendar (again) and we saw together that there is nothing on the schedule for today.
He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. Brushing began.
He just tore a page off his "Day-At-A-Glance" calendar and as he was tossing the old page into the garbage commented with amazement, "It's still January?"
"It's 17 out. How should I dress?"
(Yesterday on commenting on the cold and asking a neighbor on the elevator what it was like outside, she answered, "Actually it's great. Sun is shining and its 80 degrees. I wish.
"Wow," G commented, "It has gotten warmer.")
I asked G to bring his computer into my office so I could clean the screen. He did so. As I sprayed the screen and proceeded to wipe it clean, I explained that I had laid the screen flat so the cleaning solution wouldn't run into the computer.
G: "Could you do that for me?"
I look at him inquiringly.
G: "Oh, you are."
He came into the room and asked "What is today about?"
"Did you check the calendar on your computer to see?" I asked.
"No but I will." he replied.
A few minutes later I asked him what he had found out about today.
He thought for a few minutes and replied, "There was a long line of items but nothing I could tell."
We went to look at his computer together. He had been looking at his e-mail.
I showed him how to get to the calendar (again) and we saw together that there is nothing on the schedule for today.
He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. Brushing began.
He just tore a page off his "Day-At-A-Glance" calendar and as he was tossing the old page into the garbage commented with amazement, "It's still January?"
"It's 17 out. How should I dress?"
(Yesterday on commenting on the cold and asking a neighbor on the elevator what it was like outside, she answered, "Actually it's great. Sun is shining and its 80 degrees. I wish.
"Wow," G commented, "It has gotten warmer.")
Midnight
Midnight, sleep no where in sight.
Today he sat down to his evening coffee,
Remembering the cookies but forgetting the coffee.
He was upset that the art book he has been looking through was gone,
Until I pointed out that it was next to him on the couch.
For dinner, I asked him to "Get the water."
He stood in front of the open refrigerator door deciding how to proceed.
Eventually he closed the door but then forgot what he was doing,
So he opened the door again to ponder the situation.
After a while he remembered and went to the cabinet to get two glasses.
He opened the refrigerator door and filled the glasses with water.
He stared into the refrigerator looking for the ice cubes.
"Bottom drawer," I suggested. He was able to follow through.
At bedtime a space was empty in his "pocket drawer,"
He didn't know what was supposed to go in the empty space.
When I asked him where his cell phone was,
All he could give me was a blank stare.
"Do you know what a cell phone is?" "Yes."
So I called the number to see what would happen.
Luckily we heard the phone ringing,
But he didn't know how to follow the ringing.
We followed the sound together into the closet in the bedroom,
And there on the floor, under his pants hanging neatly on the rod was his cell phone.
"How did this get there?"
Again a blank stare.
Last night at the restaurant, he couldn't figure out how to "close" his cheeseburger,
Then he couldn't figure out how to use his knife to cut it in two.
When these situations remind me of what I have to look forward to,
I get numb. I get profoundly sad. I cannot even begin to imagine what I will do next.
Today he sat down to his evening coffee,
Remembering the cookies but forgetting the coffee.
He was upset that the art book he has been looking through was gone,
Until I pointed out that it was next to him on the couch.
For dinner, I asked him to "Get the water."
He stood in front of the open refrigerator door deciding how to proceed.
Eventually he closed the door but then forgot what he was doing,
So he opened the door again to ponder the situation.
After a while he remembered and went to the cabinet to get two glasses.
He opened the refrigerator door and filled the glasses with water.
He stared into the refrigerator looking for the ice cubes.
"Bottom drawer," I suggested. He was able to follow through.
At bedtime a space was empty in his "pocket drawer,"
He didn't know what was supposed to go in the empty space.
When I asked him where his cell phone was,
All he could give me was a blank stare.
"Do you know what a cell phone is?" "Yes."
So I called the number to see what would happen.
Luckily we heard the phone ringing,
But he didn't know how to follow the ringing.
We followed the sound together into the closet in the bedroom,
And there on the floor, under his pants hanging neatly on the rod was his cell phone.
"How did this get there?"
Again a blank stare.
Last night at the restaurant, he couldn't figure out how to "close" his cheeseburger,
Then he couldn't figure out how to use his knife to cut it in two.
When these situations remind me of what I have to look forward to,
I get numb. I get profoundly sad. I cannot even begin to imagine what I will do next.
Midnight, sleep no where in sight.
Thursday, January 20, 2011
Magic Wands
When asked how I would use my magic wand (Harry Potter Style) for Gregory and me I came up with the following. I do believe in magic but a wand will not really solve our problem unless we do the obvious: wave the wand and remove Dementia and all of its forms. Then while we are waving, lets get rid of all illness for everyone. Then create a world in which people could love rather than hate, help rather than harm, be truthful and loving. At least one more wave so no one has to be hungry, or thirsty, or in pain. Wave a little more and let death be a natural way of moving on, not one of illness or violence, and make sure that the departure is not long lived (so to speak) and long suffered.
What I noticed in hearing others talk about their dealing with Alzheimer's is the huge amount of sorrow, loss, and frustration over things we cannot control. If I could better deal with those things I cannot control and feel better about those things I can control, I think I would be a better caregiver. So there, Wave ... Wave ... Wave.
Wednesday, January 19, 2011
What Does One Call It?
I like referring to Gregory's dementia in a number of ways.
We were grateful to get an "Alzheimer's" diagnosis from his Neurologist as that helped with winning our disability claims, both with a private company and with Social Security. With most of our doctors and with family and friends it is easier to call it Alzheimer's as most people have more of an idea of what that means.
I avoid using the term "Dementia" except with doctors and friends who are "in the field." Dementia seems to refer to "something that happens to old people" which Gregory is NOT. Using the term "Dementia" does not begin to suggest the true nature of the difficulties in dealing with the afflicted person on a day to day basis which is usually not at all imagined by others.
Sometimes I refer to it as "Our Situation," or "Our Condition" which emphasizes that it is at least as much of a problem for me (maybe more so) as it is for him. I sometimes refer to it as "The Big 'A.'"
I find myself replying to people's remarks about their forgetting where they put their keys, etc: "Yes we all have those problems as we get older ... but that is nothing like what Gregory and I are going through." I find it is important to me (and hopefully to others) to respond in this way as it seems that people make "excuses" or try to "relate" as a way of making themselves feel more comfortable with OUR situation and/or to ME make me feel better. Doesn't help!
The more I study the disease, the more I think Gregory's is a Frontotemporal Disorder. There are many types, symptoms, and names for Frontotemporal, the names do not matter. Gregory's symptoms are by now scattered across the various types of the Frontotemportal Disorder labels and descriptions.
I learned more about this particular dementia in a book I ordered from The National Institute on Aging/National Institute of Health at www.nia.nih.gov/Frontotemporal (or call 800-438-4380.)
The book was very helpful in helping me understand the more specific changes that are taking place in Gregory and in being supportive of hium as the changes continue, intensify, and/or show up for the first time.
Saturday, January 15, 2011
Poetry
For some reason both Gregory and I have been drawn to poetry. I am not quite sure what he gets out of reading his poetry books but I find beauty, hope, understanding, explanations. Poetry deals with the essence. The words are carefully chosen, the images carefully drawn, the ideas carefull woven. For some reason recently, poetry has been talking to me. I wonder what it is saying to him.
Friday, January 14, 2011
Helpful Hints
I purchased a "Day-At-A-Glance" calendar for Gregory. He has lost track of time, of the day, of the month, maybe of the year. But he still can follow habits and one of them is ripping off a sheet from the calendar each morning. Sometimes during the day he will ask me the date or the day. I will respond, "What does your calendar say?" He will go look and answer his own question. In the beginning he got a little confused on Saturdays and Sundays because on the "Day-At-A-Glance" those two days share a sheet. I labeled those sheets more obviously and he seemed to learn the difference.
Tuesday, January 11, 2011
Always
On the way home today I listened to "Always" on my iPhone sung by Mandy Patinkin. The tears flowed but the windshield wipers were going so everything evened out. These are my affirmations that followed by the lyrics of the song.
I will always love Gregory.
I do not want to be afraid.
I do not want to be angry.
I do not want to be sad.
I only want to be kind.
I only want to be loving.
I only want to be understanding.
I only want to be supportive.
I am working on changing these "I DO NOT WANTs" to " I AM NOT" and the "I ONLY WANTs" to "I AM!" I will get there.
I will always love Gregory.
I am not afraid.
I am not angry.
I am not sad.
I am kind.
I am loving.
I am understanding.
I am supportive.
ALWAYS
By: Chet Forrest, Bob Wright, Edward Ward
Everything went wrong
And the whole day long
I'd feel so blue.
Walk along the swile
I'd forget to smile
Then I met you.
Now that my blue days have passed
Now that I have found you at last.
I'll be loving you always
With a love thats true, always.
When the things you've planned
Need a helping hand
I will understand, always.
Days may not be fair, always
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year.
Dreams will all come true
Growing old with you
And time will fly
Caring each day more
Than the day before
Til Spring rolls by.
Then when the Spring time had gone,
Then will my love linger on.
I'll be loving you always,
with a love that's true, always.
When the things you've planned,
need a helping hand,
I will understand, always, always.
Days may not be fair, always.
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year, but always.
I will always love Gregory.
I do not want to be afraid.
I do not want to be angry.
I do not want to be sad.
I only want to be kind.
I only want to be loving.
I only want to be understanding.
I only want to be supportive.
I am working on changing these "I DO NOT WANTs" to " I AM NOT" and the "I ONLY WANTs" to "I AM!" I will get there.
I will always love Gregory.
I am not afraid.
I am not angry.
I am not sad.
I am kind.
I am loving.
I am understanding.
I am supportive.
ALWAYS
By: Chet Forrest, Bob Wright, Edward Ward
Everything went wrong
And the whole day long
I'd feel so blue.
Walk along the swile
I'd forget to smile
Then I met you.
Now that my blue days have passed
Now that I have found you at last.
I'll be loving you always
With a love thats true, always.
When the things you've planned
Need a helping hand
I will understand, always.
Days may not be fair, always
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year.
Dreams will all come true
Growing old with you
And time will fly
Caring each day more
Than the day before
Til Spring rolls by.
Then when the Spring time had gone,
Then will my love linger on.
I'll be loving you always,
with a love that's true, always.
When the things you've planned,
need a helping hand,
I will understand, always, always.
Days may not be fair, always.
That's when I'll be there, always.
Not for just an hour,
Not for just a day,
Not for just a year, but always.
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