June 16, 2020 © by Judith Allen Shone

“Where’s … weren’t … I can get.” I hear coming from My Love.

I have no clue, physical, visual, mental or emotional, that he is trying to ask me, that he wants to know, where he is going to sleep tonight. A question of concern almost every day now, so I know if it is yet to be brought up, those could be the words he is trying to find, to speak.

Over the last eight years, conversation patterns between My Love, with memory loss, and me, have evolved into frustrating cognitive challenges for each of us. My Love’s word-finding difficulties have increased to the point where I feel locked out of his life.*

I have watched normal interchanges of thoughts decline. Initially, we called those “senior moments,” looking for momentarily lost words. But then My Love began looking to me to help fill in the gaps of the missing words. My frustrations have moved from following his thoughts to being unable to finish his sentences and eventually to being powerless to figure out what he was trying to say. I have watched the resulting social withdrawal, and increased silence diminish his motivation to speak. I am struggling to keep us both from becoming depressed.

Of course, being isolated during the COVID-19 pandemic, so far for one hundred twenty-two days without socialization, staying in our 1000sq ft apartment, has contributed to a somewhat reduced quality of life. Almost. I have actually gone out to the grocery and pharmacy six times.

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Let’s say, a ‘word’ is defined as a unit of any language that functions as a carrier of meaning.

For a while, he created his own words when the right words would not come forth. But now, My Love’s communication has evolved beyond making up new Alzheimer’s words. He now may articulate no recognizable words at all,  and instead, utter sounds when a verbalized word is not forthcoming.

Caregivers for those with Alzheimer’s disease or other memory loss grapple with various degrees of frustration when talking with a loved one. In addition, I feel our latest attempts at communication have transformed into one-sided discussions.

I cannot recall the last real dialogue between My Love and me. A conversation, a spoken, informal interchange of thoughts, has been non-existent for years. We chat and huddle for the purpose of practical, functional, or procedural instruction or actions now.

“Please stand up,” I say as I push myself off the couch so he will follow.

Or I might have to repeat. “Use the spoon, the one beside the plate; no, by the plate not on the plate. The spoon is smooth around the edges.”

How do you explain a spoon to one with memory loss, one who does not always understand? Usually my explanations mean nothing. I have to get up again and help.

“Put on your socks before your shoes,” I say, acting out my meaning. I have watched My Love put his shoes over bare feet and wonder how he would then put on his socks. Amusing, but serious.

Am I talking to a toddler?

Although we are having a discussion, and we both are thinking with intensity, it is not quite the same as being in a philosophy class. I find it more like mothering.

Nevertheless, it might just be that one college class that prepared me for the most recent discussions between My Love and me … where I learned to think.

Both of us are simultaneously involved in deep thought. My Love is struggling for words and and I am struggling for a process to understand what to do next.

According to article, “Subjective Word-Finding Difficulty Reduces Engagement in Social Leisure Activities in Alzheimer’s Disease” little is known about the intricacies of word-finding issues, about the frequency with which particular types of language complaints are endorsed after AD diagnosis, or how patients’ perceptions regarding their language declines influence disease outcomes.

~ ~ ~ Visit blog post Thank-you-Mum for more about shifting behaviours related to verbal behaviours. ~ ~ ~

My Love and I have few casual chats these days. I still must think about each sentence I speak, the precise words I choose. I even must consider the variations on the meanings of my partner’s words. Plus, I must focus on the surroundings, the time of day our discussion takes place, as well as what the meanings of his attempts at phrases might be. I am not yet a mind reader.  

My Love is having trouble speaking the words he is thinking, those he wants to say. Many times, he cannot even act them out. In fact, those times he has a hard time responding to me when I am guessing what he is trying to tell me because he does not understand my guesses.

He makes sounds which do not always form words. He uses his hands as if trying to build or manufacture his words. He is not enacting his words. He does not stand up to show me when he cannot think of the words “stand up.” Instead, he fidgets with his fingers and twist his hands as if tumbling them, a movement that shows his anxiety but does not express his thoughts. He becomes anxious that he cannot disengage the meaning of the thoughts from his brain through any manageable behavior so that he can communicate them.

“Are you aware you struggle to tell me things?” I ask.

As he droops his head, I can see on his face that he is embarrassed by my question. But that means he understood it. He then tries with gestures and words to tell me he does know…but no meaningful sound comes out. Finally, with a look of defeat, he shakes his head, ‘yes.’ 

Next, I presume he will not even recognize my words.  What seems like a ‘conversation blackout’ is sporadic right now, but it is just a matter of time until it becomes a permanent communication ‘blockout.’

Then what magic and wisdom will I need in my caregiver toolkit?

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These last few days made me realize how much I have been talking to myself over these eight years. It is a blessing that I like to write and read. I can read what I write…I am talking to myself…when words go on the screen!

Thank you, for listening to my one-sided conversation!

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ACCEPTING THE GIFT thought: To you, my readers, remember, we are only human, doing the best we can in the space and time where we are living at the moment, with the resources we know about at the time.

* Word-finding initially discussed in “Where Do The Missing Words Go?” in this site.

“Conversation Blackout” © June 15, 2020 by Judith Allen Shone

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Visit the Alzheimer Society Halton or call 289-837-2310 to keep up with their newest programs that will assist caregivers and loved one on their journey through Alzheimer World.