FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Sunday, February 27, 2011
"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."
Friday, February 25, 2011
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
Sunday, February 20, 2011
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!
Monday, February 14, 2011
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.
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.
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.
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.
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.
"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!"
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.
Sunday, February 13, 2011
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
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
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.
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
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
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
"Wondering what about the cat?"
"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
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!!!