He Talks, Without Words

After my father’s stroke in March, he was rendered speechless.

But he can, and often, looks away, rolls his eyes, reaches for my hand or waves his hand to dismiss me. Early on he learned to shake his head for no, or nod for yes.

He sometimes mouths words to me without sound. A handful of times there has been sound. Like the day he said, “hao,” or good in Mandarin, in a low, raspy voice.

He sometimes mouths words to me without sound. A handful of times there has been sound. Like the day he said, “hao,” or good in Mandarin, in a low, raspy voice.

Last month he expressed frustration, more so than usual, and I suspect it is one of the main or many reasons he pulled out his Gastric feeding tube, or G-tube — twice — in two weeks.

When I visited him at he hospital he was angry and agitated — his eyes were large, his stare more like a glare. He took short, hurried breaths.

All he needed was words — angry words.

But even without them, I understood he was not happy.

At one point at the hospital he grabbed my arm and yanked me toward him, mouthing and attempting words, pointing repeatedly to the board on the wall in front of him. All I heard were hissing noises. I could not read his lips.

I asked him a series of questions, and asked that he point to the word “yes” or “no” that I wrote on a piece of paper.

He had already shared during occupational therapy that he felt the staff at the skilled nursing facility did not respect him. Our family is quite aware of how aware he is of his surroundings, and while he cannot speak, he will certainly let you know if he is willing to engage with you.

I digress.

His answers were:

Yes, he would like to continue his therapy at USC Keck School of Medicine. (Since December, my father has attended outpatient rehab for speech and occupational therapy.)

No, he does not want to stay at the skilled nursing facility.

I told him I was calling and visiting other nursing facilities, including one that his primary care doctor recommended. When I asked if he understood, he pointed to yes.
When I asked if the feeding tube bothered him, he pointed to yes.
I explained to the hospital nurses and the social worker that I had concerns about my father’s care, and she worked with us to see if other, better-rated skilled nursing facilities in Montrose, Santa Monica or Pasadena accepted his health coverage. Unfortunately, the better places accept Medicare along with private insurance.

So the hunt is on for private insurance as his secondary form of health coverage.

The day after he returned to the skilled nursing facility, I visited him and explained what happened. I stressed that I would continue to look for a new place for him, where he was comfortable and felt respected.

He is now working on non-verbal ways of expressing himself in occupational and speech therapy.

At occupational therapy, my father was introduced to a communication board with basic emotions and expressions. He was able to point to indicate he was sad, that he preferred to watch his news on TV over reading a newspaper (though he still enjoys flipping through the paper) and that he was sleepy.

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The communication board my father’s occupational therapist created for him to help him become comfortable expressing what he needs and how he feels.

My father also hit a beach ball back to his therapist, and the next game involved grabbing a bean bag and then placing it in a basket. In addition to hand-eye coordination and having him stretch out his arm to grab the bean bag from the therapist’s hand, his brain is tasked with informing his muscles of when to let go of the bean bag.

Apparently the timing and physical actions required for muscles to release something are more complicated than the process for grabbing something.

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My father, with his therapist, in the process of placing a black bean bag into the basket on his lap. After a stroke in March, he is learning to better control the right side of his body, talk and swallow.

At the end of occupational therapy, he was asked how he was feeling.

He pointed to “happy” on the communication board.

In speech therapy, in addition to learning to swallow again, he has been using a stylus to point to words or pictures, or a combination of the two, on a special laptop that we are fortunate to have on loan.

Recently, his speech therapist guided him to a section about feelings, both positive and negative. I stepped back to allow him and his therapist some privacy. This was also the week after his most recent hospital stay, AKA G-tube episode no.2, so I felt he might still have something on his mind.

When she asked about positive feelings, his hand stopped moving. It had been hovering over the different icons on the screen, but now he rested it next to the laptop. She asked that he look at the positive emotions, and identify and point to the “happy” emotion. He did as she asked. His hand again rested next to the laptop, indicating he was done with this section.

She then asked him to look at the negative emotions.

His eyes scanned the screen.

There were plenty of options to choose from, and the therapist read them out loud to him.

Then she asked that he choose the emotions that he was feeling.

Most of his selections did not surprise me: angry, mean, anxious.

But his selection of “guilty” was surprising.

He stared at the screen for some time, and continued to move it up and down to see all of the emotions.

I thought of his possible reasons for feeling guilty.

And then it became obvious. He was having to be taken care of. Literally moved from one place to another. He does little on his own. His mind seems to be functioning, although sometimes it is slower.

Even before the stroke there were times he would tell me he could not remember some things. He walked without a cane or walker before his stroke, but he sometimes walked with a limp. It was likely the result of insufficient therapy after a fall a few years ago.

I thought of his possible reasons for feeling guilty.

And then it became obvious. He was having to be taken care of. Literally moved from one place to another. He does little on his own.

I also wondered if his guilt is tied to regret. Does he feel guilty for any or some of the things he’s said or done to us? Does he wonder if things could have been different? He was often an angry man, enforcing his will easily because few dared to disagree with him. Eventually I did, and it resulted in a cavernous divide between us.

He certainly has a lot of time to think. I often wonder if he would dare to share the thoughts that I think have crossed his mind.

Language is such a significant part of how we communicate — yes, non-verbal cues such as body language and facial expressions are important, but what we say carries so much weight.

When someone cannot always express themselves, you learn to find other ways to reach them. At least I do. My Mandarin vocabulary continues to expand. I learned Spanish, my Mexican mother’s native tongue, but not Mandarin. I feel this disadvantage more now that he cannot speak.

Culture and language came up recently when I planned a small but belated Chinese New Year celebration at the nursing facility with him. It is easier for him to understand his native Mandarin than English, and I find myself translating words and phrases to Mandarin quite often.

I know little about the new year traditions because my father didn’t teach them to us. My knowledge of the holiday was limited to lunch or dinner in Chinatown when I was young. From our table, I watched the men outside the restaurant holding large paper dragons, making them snake up and down and dance, and making me curl away in fright.

But I do not attempt to hold him accountable for the past anymore. I am pleased to see that he makes progress, and happy to celebrate those accomplishments with him. I do hope that he will speak again, at least say a few words at a time. But I stay focused on the now, and what he can accomplish today.

And as long as that list continues to grow, then we are both heading in the right direction.

 

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