July 26, 2016 § 6 Comments
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.
July 14, 2016 § Leave a comment
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.
July 6, 2016 § Leave a comment
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.