OCTOBER 14, 2019 BY JAS
Where do the missing words go?
Caregivers have no warning what is coming next. We can get basic education from an Alzheimer Society, but a four-day course did not make me a ‘trained’ caregiver.
My best teacher has been our, so far, eight years of experiences. I share those here. Through this writing, I share what might be found in the books, “Is There Any Ice Cream?” or Part Two to come, “Did You Hide the Cookies?” – stories of My Love and me.
“Look at those….,” My Love pauses. “…up there….” He 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 knew 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.
How does one with dementia remember that he can’t remember?
At first, he acknowledged when he had forgotten words. But lately, even that recognition has faded. Along with Alzheimer’s, My Love has had an associated disease, Anosognosia. The brain has stolen his ability to be know he has memory losses. He does not believe his forgetting is a disease. I have learned to accept that he does not recognize his loss of memories, that he just does not remember. Oh, what a crazy disease!
My Love has progressively been having ‘word finding’ issues for nearly two years, with words seeming to be buried deeper and deeper with each new month. Or do words dissolve and vanish?
“I am going to…” and he points.
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 us a physical gesture, a pointed finger, to indicate “down the hall” or “to the bathroom?”
But this is different. He can’t find the word to finish a sentence, so he points. Occasionally, when he can’t find the words, so he stands up to act out what he is trying to say. The words sometimes never come, not even if I wait.
His ability to make the thought-word connection is fading, even to the point where he can no longer make gestures that explain.
Eager to ‘get on with it’ I sometimes interrupt his ‘trying to tell me,’ and then, unfortunately, I get his mind off track. I am trying to stop doing that. He does better if I just watch and listen. I have learned only to respond when he looks at me to inquire if I understand him. If he indicates he wants help, I insert the word as if part of our conversation.
I realize that sometimes silence can allow a word to surface, although I am not convinced it is noise or confusion in the room that makes My Love forget. At this point along his Alzheimer’s spectrum, I believe he would have issues finding words if he were alone in a peaceful garden.
“Where are those…who were just here?” he asks me, referring to the people who apparently have visited us nightly for a couple years, now. He seems only to ask after they are gone. He relates seeing between two and four people each time. I can’t determine if he really sees them or just senses them. Are they hallucinations? I suspect his Alzheimer’s won’t hold onto the memory long enough so he can tell me what he saw.
I presume My Love is speaking of imagined visions only because I saw no one. He never has found the words to describe them. Is it the words he has forgotten or the visions? 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 could not tell me. To me, they seem like nightly monitors who comes around to check on him. I know they will appear and leave, and he will be able to tell me no more about them tonight than last night.
“How long will you be here?” he asks as part of the same nightly routine.
“I will be staying here. I live here with you.” I say, almost routinely now.
“Here? You live here” he asks each night, as if he had just learned if for the first time. “Where do you sleep?” He always worries about where I will sleep.
“I will sleep where I always sleep, in our bed.”
That seems to settle him, but he still has a quizzical look on his face. “You sleep in the same bedroom where I do?” he asks.
“I do.” I know he no longer recalls my name, only that he feels comfortable with me.
He nods his head telling me he understands. He never tells me if he recognizes that I am the one who has been with him for twenty-six years, but I don’t go to that conversation anymore. He doesn’t recall too much about me or us. Our history story seems to mean nothing to him. He always responds as if learning it for the first time. He does not remember even if I tell him.
Does it matter?
He sits quietly. I ask if he wants to go outside for a walk. He shakes his head no. I lift the remote and ask if he wants to watch the TV. He shakes his head no. I ask if he wants to paint. I move to get the paints and table out. He shakes his head no.
Each time I ask, he shakes his head. When I ask if he would tell me something he would like to do, he shakes his head no. Where do those words go? Why does he not try to respond with words?
I sometimes think he is depressed, and yet, if I suggest the trash has to go down to the dumpster, I can hear him from the next room, nearly yelling to me, “I’ll take it down for you,” and he is up and in the kitchen looking for the key in minutes. I do not understand him or this disease.
I moved my computer and office boxes to the dining room and now spend my office time there instead of in a separate room. In my dining room office, I can be near him, easily see him, be aware of his needs and know his situations. I can write, my journal notes and my stories, while there, but most importantly, he will know where I am.
Being close makes me more aware of his loss for words. No one used to have to put words in his mouth in a discussion. But now I notice, our chats have dropped off from one or two words to almost none. Even if I pick a topic he used to love, like boating, he has one or two words, but more than likely he has a familiar phrase, one of his scripts, “yes, maybe,” or “I guess” to add, nothing more. If I draw a picture with words of his boating days, he might add, “well, maybe,” or “yes,” or “I don’t remember.” He rarely adds one more sentence to our ‘conversation.’ His memories and the related words seem to have vanished. Where do those thoughts and memories go?
Every day I 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. Now, he gets up, looks at me and points. His words are gone, or he doesn’t try to find them. I have not figured out which.
I respond, “You are going to the back to get a sweater?” and I wait to see his response. It likely will be a gesture; he uses fewer words. I will know if I guessed correctly.
When he wants to go outside to sweep the balcony, he asks me where his gloves are.
“Beside the door, on the windowsill.” I watch as he goes to the sill beside the door and picks up the binoculars.
“Not the binoculars, but the gloves right beside them.” I guide him, hoping he sees the gloves.
He picks up the paper towel roll.
“The gloves are on the end,” I continue to use words to help him find what he wants.
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. He has no idea where the gloves are. I am not sure he knows he asked for them. I get to the door and reach for the gloves.
“Oh, I didn’t see them,” he admits. “I didn’t know that is what they were.”
Confirmed. I don’t’ think he connected the word gloves with the actual gloves.
So, here was a reversal 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 with an object.
A couple weeks ago I became painfully aware of his diminishing use of vocabulary. His inability to find words blared out at me in capital letters. I-CAN-NOT-BE-LEFT-ALONE-ANY-MORE.
I had gone to the pharmacy, no more than twenty minutes, to drop of his meds for the pharmacist to put in his blister pack. I have been leaving him regularly for short periods, once in awhile, albeit for shorter and shorter time spans as time has progressed. I left quickly, telling him I’d be right back. He agreed he’d go nowhere, but wait on the couch.
On the way home I noticed he had called me several times on my phone, which I had forgotten to take off airplane mode. Waiting for the elevator, I called him to see what he wanted.
“Are you coming to get me?” he asked.
“Where are you?” I asked him back, not sure where he’d be if he asked me such a question.
“I don’t know where I am. I don’t know if you can find me.”
Those few words threw me off guard. I thought he was going to stay home, or maybe walk the dog, which was only round the garden path and back inside.
I asked myself if I could find him, in a place he did not know where it was. My mind started to race. I thought of lots of places he could be, but they had to be somewhere he didn’t recognise…all of a sudden Warner Brothers couldn’t have had more creative minds working for them. I thought of all sorts of places he might be.
I asked him, “Can you tell me what you see?” thinking if I knew what was near him, I ‘d know where he was.
“I see the boats,” he told me. Well, that was a start. He was near home. From our balcony, we can see the river where boats are docked.
“Can you tell me where you are?” I asked.
“I don’t know, and I don’t think you can find me. Someone put me here and told me they’d come back for me, but they aren’t here yet.”
“Can you tell me what you see nearby?” I asked again.
“Two tall white things,” he said. “You know them. About forty feet tall.”
I didn’t know. And at that moment, forty feet did not mean elevators to me. His lack of word finding was not helping me find him. He could not tell me where he was, and my guesses were coming up empty.
In time I called 911, got the police to help me search for him. I worried My Love’s phone battery would die and he’d be gone forever.
Keep in mind, his word loss is relatively new to us. I surely don’t always remember it right off. But after I suggested to My Love that he come to the front of our building, he eventually did. It is another long story, but he did walk outside the side hall inside.
He had been seated on the couch. The phone was beside him. He was waiting for me. I was the person who told him they’d be back, to come home. He could not find the words to tell me he was in our apartment. He could not find the words to tell me he had gone nowhere. He knew only that he was alone, afraid, and wanted to be found.
I will not leave him alone again, ever.
I wonder now how our life is going to be going forward with fewer words? I cannot be gone from him if he is by himself. Readjust, recalculate, rethink…
Where do those words go?
Each day do something to make others smile and your heart sing! ~jas
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Night Visitors © 2019 Judith Allen Shone
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