OCTOBER 14, 2019 – Updated August 24, 2023 BY JAS

“Look at those…..” My Love pauses.  “…up there….” My Love points toward the blue sky as we are driving to the store. “Oh, you know, don’t you? Those…those squares. They are so… so…. rubbed”

There. He finally said his words. He seemed frustrated that they weren’t the words he wanted to say. His drooping head told me he had tried but couldn’t find the words “clouds” or “pretty” to tell me about what he was seeing.

Where do those missing words go?

We can get basic education from an Alzheimer Society, but my beginner course did not make me a ‘trained’ caregiver. So many aspects of dementia were learned as I encountered them.

Some with dementia are not aware that they don’t remember.

At first, I was not sure if My Love was aware when he forgot his words. But that uncertainty faded when his doctor told me that along with Alzheimer’s, My Love had an associated disease, Anosognosia.  The brain had stolen his ability to know he was not well, that he had memory loss. He didn’t understand that his forgetting was a disease because he really didn’t know he was forgetting. I have learned to accept that he does not recognize his loss of memories, that he just does not know he is forgetting.

My Love progressively developed ‘word finding’ issues over two years, with words seeming to be buried deeper and deeper with each new month. Or did his words dissolve and vanish?

“I am going to…” and he pointed.

Isn’t that rather normal? Don’t we all do that from time to time…forget a word or shorten a sentence?  Don’t we use a physical gesture, a pointed finger, to indicate “down the hall” or “to the bathroom?”

For a while when My Love couldn’t find the word to finish a sentence, he pointed. At first, occasionally, when he couldn’t find the words, he’d stand up to act out what he was trying to say. The words sometimes never came, not even if I waited. His vocabulary was diminishing.

His ability to make the thought-word connection was disappearing, even to the point where he could no longer connect the idea of a gesture that explained, because he was losing the word, and of course the meaning, he was trying to connect. He could not indicate a word through movement to replace a verbal utterance…like he might have in charades.

Impatient to ‘get on with it’ I sometimes interrupted his ‘trying to tell me,’ and then, unfortunately, I’d get his mind off track. He did better when I just watched and listened.  I learned to respond after he spoke. When he’d look at me quizzically, I was not certain if he wanted help, or if he didn’t know what he was supposed to do. But he appeared to sense something. I felt terrible not knowing exactly what he felt but could not convey.

Although I was not convinced that it was the noise or confusion in a room that made My Love forget, I realized that sometimes silence could allow a word to surface if there was a word he could recall.

“Where are those…who were just here?” he’d ask me, referring to the people who apparently had visited us nightly for a couple years. He seemed only to ask after they were gone.  He related seeing between two and four people each time. I couldn’t determine if he really saw them or just sensed them. Were they hallucinations?  He couldn’t hold onto the memory of the vision long enough so he could tell me what he saw. In seconds, he had no idea what I was asking about.

I presumed My Love was speaking of imagined visions only because I saw no one…he never found the words to describe them. I often wondered if he had forgotten the words or just never connected with the visions in a way they could become memories? Or both?

At first, I quizzed him about the appearance of the visitors. Did he know their reason for being here? Did they have any conversations? He rarely understood the words of my questions…no wonder he could not tell me. So he was not only losing the ability to find words, but also to comprehend words. Those years were such a difficult time of his 10-year journey.

When, during those afternoon sundowning periods, he’d speak to me…sometimes I wondered if I were like an hallucination, too. I’ll never know.

“How long will you be here?” he’d ask me repeatedly as part of the same nightly routine.

“I will be staying here. I live here with you.” I’d say, almost on cue.

“Here? You live here” he asked each night, as if he had just learned it for the first time. “Where do you sleep?” He always worried about where I would sleep.

“I will sleep where I always sleep, in our bed.”

My answer always put a quizzical look on his face. “You sleep in the same bedroom where I do?” he asked.

“I do.” Sometimes, he’d get up to go look at the bedroom, to check I guess.

About six or seven years in, maybe three years before he passed, I knew he no longer recalled my name. I was never sure if he even ‘knew me as his partner.’ However, when asked, “Who is that with you?” when we went together places, often he would respond, “she’s mine”, or “Mine.” Still I never was sure what he really ‘knew.’

In the latter years, I stopped asking if he know who I was..it didn’t matter. In the last two or three years, he didn’t recall too much about me or us. He only seemed to sense knowing me. Our story seemed to mean nothing to him. He always responded as if learning it for the first time. He did not make the connection, even if I told him our whole story.

Does It Matter?

He sat quietly. I asked if he wanted to go outside for a walk. He shook his head no. I lifted the TV remote and asked if he wanted to watch the TV. He shook his head no.  I asked if he wanted to paint.  I moved to get the paints and table out. He shook his head no.

Each time I asked, he shook his head no. When I asked if he would tell me something he would like to do, he shook his head no.  Where did those words go? Why didn’t he try to respond with words?

I sometimes thought he might’ve become depressed, and yet, if I quietly spoke out loud to myself, “the trash has to go down to the dumpster,” I could hear him from the next room, nearly yelling to me, “I’ll take it down for you,” and he was up and in the kitchen looking for the keys in minutes. I knew he was not deaf!

I moved my computer and office boxes to the dining room and now spent my office time there instead of in a separate room.  In my dining room office, I could be near him, easily see him, be aware of his needs and know his situations. I could write my journal notes and my stories while there. But most importantly, he knew where I was.

Being close made me more aware of his loss for words. I noticed, our chats had dropped off from even one or two words to almost none. When I picked a topic he used to love, like boating, he usually responded with one of his scripts, “yes, maybe,” or “I guess,” adding nothing more. If I described a picture of his boating days using words, he might add, “well, maybe,” or “yes,” or “I don’t remember.” He rarely added to our ‘conversation.’

I began to hear more silence than words. He used to at least tell me where he was going when he got up from the couch and went…somewhere. He’d get up, look at me and point. It seemed he no longer realized he once had used words.

Still, I guessed, “You are going to the back to get a sweater?” and I waited to see his response. It likely was a gesture. Eventually, I would know if I guessed correctly.

When he wanted to go outside to sweep the balcony, he asked me where his gloves were.

“Beside the door, on the window sill,” I explained. I watched as he went to the sill beside the door and picked up the binoculars.

“Not the binoculars, but the gloves right beside them.” I guided him, hoping he’d see the gloves.

He picked up the paper towel roll.

“The gloves are on the end,” I continue to use words to help him find what he wanted. I begin to realize he not only did not know what he wanted, but he did not understand what I am saying.

He picks up a roll of pink doggie bags for picking up doggie doo.

“The gloves are right by the door,” I say one last time, getting up to walk to the door to show him. Honestly, I am not sure he knew that he had asked for gloves. I get to the door and reach for the gloves.

“Oh, I didn’t see them,” he admitted. “I didn’t know that is what they were.”

Confirmed. I don’t’ think he connected the word gloves with the actual gloves. I began to feel it was just a word that came out of his mouth with no connection to content.

So, here was another aspect of his not finding the words to express his thoughts.  He was having trouble finding ‘reality’ to go with the words. I said the words, but his spontaneous word-association ability appeared confused. He did not really connect my words gloves with the object, gloves.

I wonder now how our life is going to be going forward with fewer words?  How will the loss of words impact the rest of our life? Readjust, recalculate, rethink…

Where do those words go?

~ ~

~jas

Each day do something to make others smile and your heart sing! ~jas

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