Aging vs Dementia vs Life

Periodically I post comments on my friend Kate in Australia's blog and then post them here as well. I do this because I find that I have shared something that might be important to share with you as well.

Kate, Kate, Kate,

Not easy. Your post's ending shows you still have your sense of humor. Very important to keep that:-) 

I personally believe, based on my observations of Gregory and on my own aging brain and memory (although I do not believe that I am experiencing Dementia but did notice more forgetting begin since I was 40 - thirty years ago,) that when I fight the loss of memory, fight the inability to recall pieces of information, am under a lot of stress, or am tired ... it gets worse. When I relax and release it, I have an easier time. So differentiating between your public self and the ability to relax at home is good.

Since both Gregory and I were 40, we invented what we called, "The Noun Disease." When we had trouble recalling a proper noun or someone's name we just announced "NOUN" and keep on with the sentence. Sometimes it would come later, sometimes the other person would substitute the noun, and sometimes it didn't matter.

In many ways there is so much of my past that I do not (or have chosen not to) remember. For the most part that doesn't matter. I am not trying to compare myself to you but in some ways there are similarities to "getting older" and "having dementia." We both know which one we would choose if we could.

Hang in there (as I picture that famous poster of the cat hanging from the window sill by its toenails!)

Gregory's Memory Card

Family and Blog Friends,

So many of you sent regards and condolences and they are all so appreciated. I know that life and miles prevented many of you from attending Gregory's Memorial at the condo last Sunday. If you would like one of Gregory's Memory Cards, LIKE

www.facebook.com/alzheimersalovestory

on Facebook and private message your address and I will snail mail a card to you.

Michael

Appendectomy With An Awareness

This took place last Tuesday, September 8.

The severe pain started at 10:00 Tuesday night. I took myself to ER at 3:00 Wednesday morning. Had surgery by 9:00.

God Son Isaac sat with me during recovery. Jan, his mom/my friend, dropped by to spell him. Slept fairly well. Came home Thursday by 10:00 driven home by Manny. 

Doing fairly well and taking it easy at home. Amazing what they can do now-a-days. EVERY doctor, nurse, aide, staff member at Evanston Hospital was cheery, friendly, helpful, caring.

The food was horrible: sewer water chicken soup, oily red jello, bitter tasteless coffee. 

The great timing of all this is that I was due to fly to Portland to visit friend Pat on Wednesday. Can you imagine how this would have come down if I was on the airplane or even in a new city without my own home for comfort? I am grateful to the Universe. 

Given the situation, and my staying low key, I haven't visited with Gregory since last Tuesday, some 5 days ago. In debating whether or not to visit today (still feeling a little stomachy and nauseous) I realized that I constantly think about him non-stop. Even thought we are not living together, his presence is with me emotionally, physically, and intellectually.

I know that he is in good hands with Lieberman and Manny and Halina. The reality is that after five days he may not remember me or think about me as I do him. I'm not saying that he does't know who I am anymore, but without the trigger of seeing me, I am probably not part of his awareness. 

This led me to the realization that I NEED him MORE than he NEEDS me! Interesting. As long as he is happy, content, safe, well fed, kept clean, and somewhat entertained ... his life is full and he is OK. 

I am the one who suffers when we do not see each other. Not really sure what all this means so will have to think more about it. But an interesting awareness don't you agree?

Seven Days or a Week

It has been seven days since I was with Gregory. Six days in California and one day regrouping at home in Evanston. I took the extra day not only to regroup, unpack, and chill but also I was aware of some avoidance going on.

I was afraid to see Gregory, wondering how I would feel and wondering how he would react. Would he have missed me? Would he remember me? Now that the documentary "hoop-la" was over, how would it feel returning to my day to day and my visits to Lieberman.

When I turned the corner of the hall towards Gregory's room, he and Manny were sitting in front of the balcony doors, looking outside and singing. I just stood there and didn't say anything. Manny notice me and moved away from Gregory. Gregory kept singing.

I moved more in front of Gregory, put my hand on his knee, and smiled big. I still hadn't said anything. Gregory kept singing.

Finally I said, "Hello my love!" Gregory looked at me with a blank look on his face. "I love you!" Gregory's face changed to his 'oh I have a visitor look.' "I am back and here to visit you. Did you miss me?" Gregory's face slowly, ever so slowly, began to register and process who I was.

"Oh my. It's you," he mumbled through tears and swelling emotion. He began to sob and I leaned in, hugged and held him. I slowly backed away but he held tight and said, "Stay, stay." And I did.

For the next fifteen minutes or so, as I talked and as he mumbled, he went back and forth between laughing, and delight, and tears, and being overwhelmed.

I agreed that it had been along time since I had visited and I apologized explaining where I had been and said I would try not to do that again. Perhaps my part of the conversation was more for my benefit than his.

At one point he leaned forward, very strongly and emphatically pointed out the window and said, "I want to go there!"

"You want to go outside?" I asked.

"Yes!"

"OK, we can go outside if you would like." In my heart I heard him saying, "I want to go home. I am inside and I want to be outside." But who knows how accurate my heart is when it comes to interpreting Alzheimer's Speak.

Finally he calmed down and we just had a good visit, with souvenirs and drinks of water and mouthfuls of chocolate.

I took my leave to go to a meeting with our lawyer, telling Gregory I'd be right back in ten minutes and he let me go without a problem. When I returned he was back in his usual mode of welcoming me for a visit and the trauma of my week's absence seemed over.

So what happened? As best as I can tell, and based on feedback from Manny, Gregory did not miss me while I was gone but realized and experienced the emptiness of my having been gone when I returned. It took him longer to process my face, who I was, what I meant to him and like a developing photograph, the negative image slowly became a positive image.

He was more overwhelmed by the memory of my absence triggered by my return than he was by the actual absence. Either way, we are both happy that I am home and I eagerly look forward to seeing him again today and visiting with the rest of my Lieberman Family as well.

Time To Review

Each night, when Gregory and I are tucked into bed and the lights are turned out, we hold hands.

I review the events of the day, beginning with "It was a good day." (Even if it wasn't.) I briefly name each significant event: for example: "We shopped for groceries. For dinner we had pizza. The Call The Midwives episode was wonderful."

Next I review the events for tomorrow, again very briefly. For example: "Tomorrow we have a slow morning, then we go to the opera at night."

To the day's event review, Gregory usually responds with: "Yes it was good." or "It was great." or just "Uhuhh."

To the tomorrow's event review, Gregory usually responds with something like: "Oh goodie." or "Nice!" or "Mmmm."

Over time I had to learn not to discuss the entire week, or anticipate out loud something that was happening in two or three days. Too much information was not only not remembered but it confused time even more than it was already confused. He would ask, for example: "Is the movie today?" When it was on the weekend. or "When will they visit?" When people were  going out to dinner with us mid-week. What he doesn't know doesn't hurt!

Works pretty well. Not sure how much he understands or remembers but it does give us something to talk about when we go to bed besides the always wonderful:

M: Good Night, I love you.
G: Me too!
M: Me three:-)

Form Follows Funcion

Memory doesn't inform.

Telling doesn't inform.
Pointing doesn't inform.
Touching doesn't inform.
Showing doesn't inform.

Only doing for has for m.

Sunday September 15th: So Far A Day Much Like Any Other Day

I would say that in normal conversation, Gregory is missing approximately 80-90% of his language word associations. "Close the DOOR." "Turn off the LIGHT." etc no longer work. "Your newspaper is on your TABLE." ... "on your TABLE." He headed to the front door.

Memory is another thing.

He asked if the pile of clothing on the bench (where I put his underwear and sweats every morning) were mine or his. When I explained that they were his clothes, in the same place every morning, he began getting dressed.

He proceeded to forget the underpants. On being prompted to put them on first, he did not know how to get into them ... beginning with backwards ... followed quickly by both legs in one hole. With help, he figured out what to do.

Sweat pants went on backwards. With help, he figured out what to do.

For the first in a long time he got on his undershirt and sweat shirt correctly the first time.

If he had to name any of these foreign objects, he would not be able to.

He is currently reading his NEWSPAPER at his TABLE wearing his UNDERPANTS, UNDERSHIRT, SWEATPANTS, and SWEATSHIRT.

Lord (if one exists) only knows the comprehension level of his newspaper reading. He cannot answer any questions about it and cannot share any of what he read. Now and then he will bring the paper to me to show me a picture.

I am currently writing this BLOG, flumoxed although calm. The cats are chasing each other around the condo. Our day has begun.

Start Your Engines

We are on the move again. For about two weeks now, Gregory has not been able to smoothly begin his morning routines. As you know, I am not my best in the morning so this has been difficult for me.

From now on, I think we are at the point that I need to "walk" him through the morning activities: take off your sleep clothes, turn on the heat, set up your shaver, shave, clean and put your shaver away, put on your underclothes, put on your sweats, begin your day. By accepting this responsibility (which I really don't want to do and probably resent) I will make his and my life easier. Let me explain the "less than saintly" way I handled it this morning.

This morning when I suggested that it was time to begin the day, he got out of bed and hung around the bed lifting and lowering his sleep shirt with an inquisitive look on his face. "Go in the bathroom and shave," I prompted. I think he wakes up and is disoriented about where he is, who he is, and what he should be doing.

I must have drifted back to sleep, which I sometimes do while he is shaving, because next thing I knew, he came to me for help. He had gotten out of his sleep clothes, had not begun shaving, and was trying to get his sweat shirt on starting with putting his arms into the sleeves from the outside. Can you picture this? I won't bother even trying to describe, just believe me.

I helped him off with the shirt and asked, "Do you NOT know how to begin the day?" Fatal mistake on my part number one, when will I learn? He couldn't answer and became frustrated instead. When will I learn? I think I would do OK if he could say, "No Michael I do not know how to do this today." Then I would help but instead he closes down and I fume. Why was I waiting for an answer and why did I think he would be able to communicate with me?

By now I am just short of raging. But I control myself. So what do I do? Did I mention that I am not good in the morning? I made him get back into his sleep clothes, get back into bed, and we started over from the beginning. I never did say I was perfect! He probably had no idea what I was doing but it kept me under control so it must have been good.

I walked him through the beginning of the morning activities, probably not in the nicest tone of voice, did I say I am not good in the morning?

As we went through each step he behaved as though he knew what he was doing from the beginning leaving me numb and wondering what I had just spent my last half hour doing. For some reason when I trigger the memory he thinks he has always been acting on that memory and for some reason that makes me angrier then having had to help him through it in the first place.

You see I am still normal but he is the new normal and most often I find it hard to live in his crazy world. I use the word crazy loosely if only because Gregory is NOT crazy, but sometimes I think I am when I am trying to operate in his world.

What is Your Name Follow Up

After we were both cleaned up for bed, and I was sitting here writing about Gregory's not knowing my name, he crawled into our unmade bed and covered his head with the blanket.

I sat down beside him and asked, "How are you doing?"

"Not well."

"Why?"

"I don't know."

"So you didn't remember that you have Alzheimer's?"

"Yes, I do."

"It must have been hard realizing that you didn't know my name."

"Yes it was. Your name is Michael."

"And yours?"

"Greg."

"So that is all over for now. You know I love you very much. And I know you love me very much. And I AM HERE FOR YOU."

He cried. I hugged. We kissed. We laughed.

Another Happy Ending.

What is Your Name?

Don't read this if you get easily depressed, because I know that after tonight's episode, I am depressed enough for an entire city. Maybe he is loosing more functioning because he is still ill. I do not know what to think.

He was in the bathroom on the toilet. He moved his bowels and wiped himself. I asked about the toilet paper still in his hand and he didn't know what to do with it. I had him stand up so I could see his progress. He had done some wiping after all. He sat back down.

"Throw the paper in your hand into the toilet." He did not know what to do. He looked at the garbage pail next to the toilet and pointed at that. "No," I said, "In the toilet." He continued to look confused. I asked him to stand up again and said, "You throw the shit paper in there." "Oh," he replied.

I explained the process to him again and you would have thought I was speaking in a foreign language. "So it looks like you do not know how to use the toilet anymore, I will have to help you."

He got upset with me and was able to say, "Can't ... you ... just ... tell ... me?"

"Yes," I answered, "but when I tell you you don't understand." He didn't understand. We went through the three or four times. Tell me. But you don't understand. Tell. Understand. Tell? Understand?

Previously we have attributed his problems to Alzheimer's and he is usually the first to tell you he has it. I said, "This is what Alzheimer's is all about isn't it! You know that don't you?"

"No! I have Alzheimer's?" He was incredulous as if he or I had never said or heard this before.

"Yes you do," I answered, "we have talked about this before." So I braved it and asked something I have wanted to ask for a while, "What is my name?" No reply. "Do you know my name?" He stood there silently for quite a while with a look of dread on his face.

Finally he said sadly, "No I don't."

"Michael. Do you know your name?"

He fumbled for words, thought, and finally answered, "I don't have one."

"Your name is Gregory." A light somewhere deep inside seemed to go on, or was I just imagining it.

"Why don't you get ready for bed now" and we had to work through what that meant.

Call It Progress

I guess you could call it progress that now I have to put his Medic Alert necklace on his neck and tuck it under his shirt because he doesn't know how to do it.


I guess you could call it progress that now I have to monitor his electric shaver because after only one day of new $40.00 blades he nicked and ruined them.


I guess you could call it progress that now I have to make sure his bed side drawer is closed at bedtime because he forgets to close it and the cats like to play with his stuff.


I guess you could call it progress that now I have help him zip up his coat because he doesn't know how to do it.


I guess you could call it progress that now I have to butter his toast because he doesn't know how to do it and tries dipping it into the butter tub.


I guess you could call it progress that now I have to select his clothes for him each morning because he not able to do it for himself.


I guess you could call it progress that now I have to put his chocolates out each night because he cannot figure out how to do it.


I guess you could call it progress that now I have to put his hat and gloves in his coat pocket when we arrive at a destination because he doesn't know how to do it.


I guess you could call it progress that now I have to fasten his seat belt in the car because he doesn't know how to do it.

I GUESS YOU COULD CALL IT PROGRESS THAT HE KNOWS HE DOESN'T KNOW HOW TO DO IT OR THAT "SOMETHING IS WRONG."

At least I am beginning to know more consistently how to help him.

On Living with Dementia

This was taken from an article written by Floyd Skloot who has also written a number of books on his life with Alzheimer's disease. (Thanks to Joan and Robert for sharing this article.)

Something I wrote 15 years ago about living with dementia became a credo for me: 

Since I can't presume I'll remember anything, I must live fully in the present. 

Since I can't presume I'll understand anything, I must experience my life without pressing to formulate ideas about it.

Since I can't escape my altered brain and the limits it has imposed, I must be at home with it. 

And since I can't presume I'll master anthing I do, I must let go of mastery as a goal and seek harmony instead. 

Neurons

Now think about what it must be like when those connections and associations begin to break down. Language no longer works, thoughts exist but expressing them is not possible, memories continue but you can no longer access them, routine is no longer possible. Life goes on but you are slowly not recognizing most of it any more.

Being Aware

I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.

I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.

He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)

While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.

What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.

This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.

So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ...  there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.

With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.

Fireworks for Christmas

While driving home from dinner tonight, I broached the subject again of not decorating for Christmas this year. I wanted to see if he remembered that he was still in agreement with the idea.

Gregory said he agrees but added, "I thought there were going to be fireworks?"

"Fireworks are for your birthday on July 4th."

"My birthday."

"Yes."

"Please be sure to let me know when."

"I will."

Raspberry Jam

This morning our best friend Roger, who spent the weekend, Gregory and I were sitting at the counter in the kitchen having our morning coffee and toast. Four jams were lined up in front of Gregory, his two pieces of toast cut in half so he could have a sample on each jam.

Finished with Pear, Fig, and Kumquat Orange he was ready for the Raspberry Jam. At first he did now remember which jam was next. So I pointed to the Raspberry. He got distracted and wondered again which jam was next. Roger pushed the Raspberry Jam towards him. Still Gregory was not sure which jam to use next. Roger explained, "The raspberry jam is next," and handed Gregory the jar.

Gregory aware and amused at his continued confusion giggled and lovingly said, "I guess that's what friends are for."

E-Mail to a Friend

Fun time last night. Enjoyed being with everyone. Great restaurant, fun collections everywhere you look.

As I mentioned Gregory is using his fingers more as he continues to fumble with understanding the purpose and use of the knife and fork, not to mention the spoon. I usually just look the other way. 

As for your suggesting that he use his fingers the other day, even though he used to be so "correct," you should not ever feel bad about trying to help. It might work or it might not. You are doing what you can with your heart in the right place.

I am still trying to figure out "helping" on a daily basis. Sometimes my helping helps and other times it only frustrates and/or confuses more. Frustrates and confuses not only Gregory but me as well.

What I do know about apologizing is that after the fact he probably doesn't remember and certainly does not hold on to difficult situations with any grudge. When you or I bring it up, it does trigger the memory for him and he will seem to remember. But if the situation is not brought up, it doesn't exist for him on the outside, only buried somewhere inside where he cannot access the memory. Tha is what "A" is all about.

Anyway love you lots. Looking forward to Tuesdays Art Opening.

m

Flowers and Lucidity

Yesterday we went to Room and Board. As we walked through the parking lot we commented on the splash of spring flowers. I was able to name the "Daffodils" but couldn't remember the name of the other flower that looks almost the same but has more than one flower head per stem. I tried but couldn't come up with its name. All of my thinking was verbalized out loud, which I often do, for the benefit of carrying on a conversation for the both of us.

"Jonquils" snapped Gregory. Proud of himself.

Marbles Anyone

Forgetting the name of an actor, after accumulating 60+ years of facts and figures in one's mind, should only be the worst of Alzheimer's/ Dementia Disease. However, I like that Mr. Reardon ends the article with: "Maybe I should be thankful to the threat of Alzheimer's. It reminds me to live life as fully as I can. Or, as Gwendolyn Brooks writes, "conduct your blooming in the noise and the whip of the whirlwind."

(Tribune illustration by Mike Miner / March 10, 2012

http://www.chicagotribune.com/news/opinion/ct-perspec-0311-alzheimers-20120311,0,6707658.story

Happy Valentine's Day

Yesterday Gregory urgently needed to tell me, "I don't...." Then he put his hands in the shape of a Valentine "...have one for you."

"We can stop in at Barnes and Nobel and you can buy one for me." I replied, pleased that he knew Valentine's Day was not too far off.

Tonight on our way home from dinner with friends we stopped in at B&N and I pointed him towards the Valentine's Department saying, "Go pick out one for me, I'll pay for it, and I promise I won't peek."

I was looking at books when he came up to me and said, "I think I found one but there is a problem."

"Show me, and I won't peek." He showed me a display card but there were no extras available. I explained the situation and pointed him towards another rack of cards. "You'll have to find another one you like."

He found one he liked, gave it to me (I didn't peek) and I paid for it asking the cashier to put it into the envelope without my seeing it.

We got home. I gave the card to Gregory and through no more about it. I was at my computer doing some writing and five or ten minutes later asked into the living room, "Are you doing OK?"

"No." came the reply. I went to see what the matter was. Gregory had been sitting at his desk, red envelope in hand, "I don't know what to do."

"Well take the card out of the envelope. I won't peek." He did so. "Now open the card." He did so. "And sign your name on it."

"That's not easy, I can't write."

Thinking fast on my feet, I gave him his pencil holder full of colored pencils (all the while not peeking) and said, "Well then draw me a picture." Which he did, put it in the envelope without help, and sealed it. "How did that go?"

"You know," he realized, "I don't think I can write anymore."

"Well, that's OK, you can tell me and I'll write for you." He liked that.

Now comes the difficult part for me, waiting to see what the card looks like. Last March when he proudly gave me my birthday card, it showed two bears in adjoining rockers, holding hands, but the card wished me a Happy Easter. It certainly was the thought that mattered, although I felt sad.