Creative Everyday

On an airline, we search for the lavatory door ofttimes considering the pilot’s locked door. We have to determine whether it is available and look at the door opener gismo hoping to intuitively figure out how it works so we won’t be embarrassed by asking for help. 

Imagine that you have dementia and while feeling the pressure of having to ‘go’, ask yourself what does vacant/occupied mean, how does it work, is it even a door, is it private and will I be surprised or confused by what’s inside.  What is flush or a call button? How do I turn on the water to wash my hands? What to do with soiled toilet paper? Am I hearing an announcement telling me to return to my seat; is it the toilet seat, the one I’m on? Do I know how to get out and where do I go? Am I having an emergency, are we landing  …wait, how do I get rid of the stuff I’m leaving behind???

Flushing, knowing what it is and how to do it is something we take for granted but to my sweet husband, it is another very confusing activity of daily living.  On our recent trip, he returned to his seat and asked me how he gets rid of “it.”  I hadn’t prepared him beforehand, I hadn’t thought of that. He wanted to know what does the flush look like, is it in front or behind him when he’s seated or standing, is it behind the lid and how does he  lower the lid.

He tried to reassure me that there was no problem, this time. Three days later, when he asked if something interesting was on my screen, I said I was writing about flushing, he said “it wasn’t a problem, he flushed the second time and it’s done” meaning that training works! 

Being one step ahead and keeping my loved one safe is a constant learning experience and I should have been the next restroom guest in line.  I worry about a real emergency in the restroom; he could not press a brightly colored button or pull a cord to summon help. 

And a comment about why he needs to use the restroom so often. He gives me a variety of reasons besides the two I already know,  anxiety and obsessiveness.  He must do this for fear that, unknowingly, he will lose it. This  recently happened, could not explain why but it embarrassed him. I understand a little more now.  Flow just comes when you have dementia. It becomes mysterious.  Unlike a child’s discovery of mastery over bodily functions and delight, in dementia there is only loss and sadness. We will work hard to keep it together for dignity and pride.

Last night, before turning out the light in the dining room I saw this note on my dear husband’s place mat, written by his hand.  This is something we always used to do.  I took a snapshot trying to figure out what it could possibly mean, written in code?  Later the next day the note was not on the table. I asked him about it. C’mon, tell me I coaxed him, my curiosity getting in the way.  Seeing the serious look on his face, I put my arm around him.

“It didn’t come out the way I wanted” he said and could not remember what it was that he was trying to write.  Not even a guess or a clue. I think he’s embarrassed and very frustrated by the loss of  the ability to write even simple words. Two Columbia University Graduate degrees, one in Philosophy, and it’s all gone. I grieve for his losses.  I wait a few days before I write this, sad is way too small a word.

Four months ago, he would go upstairs to shower before bedtime and give himself an extra half hour to read a few pages by his favorite authors. That is in the past now.  And he would enjoy telling me bits and pieces of the fictional tales making small conversation in the car or  during dinner. No more reading, even street signs are challenging, familiar words lose their pronunciation when he says them aloud, street names where he’s lived for more than twenty years.

It’s called Aphasia and is a combination of a speech and language disorder caused by damage to the brain.  It does not affect intelligence, dementia destroys those pathways. From the Ancient Greek, it means “speechlessness.”

Impairment is in one (or several) of the four communication modalities.  While learning about this I kept thinking that we take communication for granted. Here they are: 1) auditory comprehension, 2) verbal expression, 3) reading and writing and 4) functional communication.

An individual’s language is learned using thought processes socially shared. In normal aging, there are difficulties processing language resulting in slowing of verbal comprehension, reading abilities and more likely word finding difficulties.  With some aphasias, functionality within daily life remains intact.

My husband’s symptoms include all modalities that includes the inability to form words and name objects,  inability to pronounce and speak spontaneously, incomplete sentences, inability to read or write, limited verbal output, and the inability to follow or understand simple requests.

Someone asked him how he felt about having these difficulties and was he angry or frustrated.  “Accepting” he said.  Not having any critical, executive thought processes left can be a blessing.  I make the comparison – before and after dementia … and I am temporarily speechless.

Holding the hanger in my hand, I ask my dear husband to identify his clothing.

           “Looks like a person upside down!”  he said.  I told him that I’ll give him a clue  but before I could say another word he exclaimed “it’s shoes!!!”

Agnosia. The inability to recognize familiar objects includes his own wardrobe. He does not know if it’s his that he gently placed on the hanger just two days earlier.  I guess that he knew that it was something ‘a person’ wears.

I was so fascinated by how the pants were arranged that I painted the sketch but the truth is that he no longer knows how to arrange clothing.  Any way he does this is fine. In fact, the pants do not slide or slip on the hanger and I wonder why I hadn’t thought of this or seen anyone do this before. Discovery and surprises await on this journey loving someone with dementia.

Today, 99 degrees outside,  he put on a lightweight jacket because the fan is creating a breeze in the room and not knowing how to lower the speed or turn it off. He assumes the fan was my preference and can’t ask because he cannot make an inquiry about anything.

My husband always wakes me although I plead to let me sleep until the alarm sounds.

Here’s how it goes:

Sleepily, I mumble what time is it. 

“Tell me” he says.

It’s 6:37, we’ll get up at 7:00 I say.

“Tell me what?” he says urgently, demanding answer. It means what should he wear today.

Can I go to the restroom first? Go put on an undershirt and underpants, you know, the white ones I tell him.

“What does it look like?”  I don’t answer this one, I know that he knows the Jockey stuff.

Then he says: “No, you’re really good at that!”

To make a choice, even when the selection is simple like underwear in one closet drawer has a lingering question:

“What goes on bottom?”

I can’t image what it’s like to look in my closet and not have any idea what is appropriate to wear, where it fits on my body and how it fastens, buttons. Since he does not recognize his clothes, everyday his wardrobe is new to him. He never questions the outfits I pick for him as long as the pants are not shorts.  He has no favorite clothes. In the afternoon, he would no longer recognize a jacket that he had put on in the morning so his name is in everything.  If someone who loves you chose your clothes tomorrow, would it resemble something you might have selected for yourself and would you be comfortable?

Today I almost cried looking at the ‘learn to count’ books for very young children. Those pages with big numerals and pictures of two ducks and three pigs are filled with hope and a mathematical future to come.  My husband can no longer do simple arithmetic or read numbers in a sentence. It’s just gone. I make him read me the time on his watch, over and over again, until he comes close to being right and he doesn’t mind my repetitive question. He has lots of patience with me.

Tonight, with my loved one sitting tightly at my side on the sofa, we watched HBO’s “The Night Of” episode one in a series.  I cringe seeing blood even when it’s on television. The actors roles are lonely young people, stoned and drinking Tequila while playing a game with a 5″ chef’s knife.  I am riveted to the screen and when something bad happens, I shrink into the softness and protection of the sofa cushions.  My loved one, says “Should I shower?”

Dementia has stolen the pleasure he used to have watching the screen.  He sees figures talking and moving but cannot figure out what is going on, being said even when I pause the action and try to explain.  Words have no meaning,  no story line, no fantasy, no fiction.   There is only present time without reflection or commentary going on in his head. He is motivated, driven by focusing on what to do next.  A shower cannot be delayed when he has determined that he is no longer content to be with me holding my hand.  Cuddle time always ends suddenly, surprised by his abrupt departure. I’m going to shower he tells me.

Cruising was a wonderful way to celebrate turning a calendar page. It was fun sharing my birthday with 15 friends from the Insight Memory Care Center.  This is where my loved one spends three days/week fully occupied and engaged in social activities and loving balloon volleyball the most. And since everyone knows that he loves dancing, occasionally he is the dance partner to many.

This is the first birthday that my sweet and considerate husband did not give me a card, usually on the dining table long before breakfast. Sad, another ritual, no more. Dementia takes my loved one away when I need him to celebrate.  I think, please, can I have my husband back for a little while?  Who is this rigid, nervous figure beside me, yearning to visit a rest room every 15 minutes? He’s not thinking about anything else when it’s time to go.

How do you like my towel cake? The next morning, when we returned to our cabin after breakfast, the cake was gone. Our steward said that his supervisor would be missing those towels! Glad I took my pictures right away.

Back in our cabin, the steward had made a ‘lobster’ towel wearing MY sunglasses. I could not let go of the photo op. I said “quick, put your face next to the sunglasses and I’ll put mine on the other side.” The look of incredulity was worth the effort of trying to explain that you put your belly down first and then your face next to the towel.  Even without dementia, this was pretty off-the-wall!  It looked more than a swim dive onto the bed, struggling not to knock the glasses off of the towel, laughing all the while I had to switch from an iphone to an ipad to take these pictures.  I should have made a video!

      My sweet husband earned a chocolate chip cookie at the adult coloring monthly event at our local library.  For more than an hour, he toiled over this page looking up only to change colors and to ask where to color next.  His attention was so focused that I was sure it was fun for him. Fun is hard work with lots of effort put forth.

This is his beautiful work.  No longer able to read or write his name (most of the time) he can color!  We used Derwent Inktense Pencils which are water soluble and when wet, colors are intensified but be wary, the page must be wettable without tearing.

      I asked my loving husband to read aloud a fathers day card that had just arrived. He read happy fatters day (in pale text).  “Is it a joke?” he asked.

There are no jokes with dementia, words have lost their meaning and only confusion endures.  I had reminded him that his special day was coming.

My explanation had no meaning so he didn’t remember.   Father’s Day, oh yeah. So sad.

Over the past few years my husband changed what  he was eating with cereal because grapes required being able to count he thought and eating a whole banana was simpler. I tried to explain that sliced almonds and grapes are better fiber choices with whole grain toast too.

I made a big sign on the kitchen island declaring bananas off-limit for breakfast time and hid the bananas. It threw him for a loop when he looked at the empty bowl, asking what is cereal?

Success came quickly, less than a half hour after breakfast, elimination time!  I wanted to tie a balloon on the light post but of course, he was unimpressed and calmly went about his day.