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I was asked a fascinating question today:
“What are the best ways family and friends can engage a person with PSP who is almost nonverbal but maintains their intelligence and most of their memory? Having a one-sided conversation is hard. Talking amongst ourselves seems exclusionary. Any suggestions?”
I can only answer based on my limited experience and what I would want. This also assumes, as the question does, that the person can still understand what is happening around them and does not have significant dementia, which presents a different challenge.
My answer is fairly simple: include me, watch for cues, keep things natural and don’t overdo it. Give me time to answer and don’t confuse slowness with an erosion of intelligence.
I have already had glimpses of this. On a few occasions, I have been temporarily nonverbal or semi-verbal, extremely slow, rigid or almost frozen. People have continued conversations around me, which was incredibly uncomfortable. Worse, they have sometimes answered on my behalf because I needed a little time to respond.
I understand why. Silence is uncomfortable. Someone asks me something. I don’t respond immediately, so somebody who knows me answers for me. They are trying to help.
But I am still there. And I was going to answer.
If I need ten or twenty seconds to respond, please don’t fill those seconds for me. They may feel awkward to you. To me, they are my opportunity to communicate.
Don’t Confuse Slow With Stupid
This is perhaps the most important point.
Please don’t measure intelligence by the speed or method of somebody’s response. Imagine a professor who can no longer deliver a lecture and eventually communicates using a board or their eyes. They are still the professor.
I spent my career in business and was a partner in a major consulting firm. If my speech becomes slow or disappears, my history, knowledge and experience don’t automatically disappear with it. Don’t suddenly talk to me as though I am a child.
Simplify the way you ask me something. Don’t automatically simplify what you talk to me about.
If an open question becomes too difficult, break it down. Give me A or B. Ask yes or no. Accept a thumb, a finger, a squeeze, a look or a communication board.
Change the interface. Don’t assume the person behind it has changed.
Be Honest About What Has Changed
There is no point pretending this is normal. It isn’t normal for you, it isn’t normal for me and it isn’t normal for any of us.
I would much rather we acknowledge that. My communication has changed, so our conversation may have to change too. That is a far better starting point than everybody attempting an old-fashioned dinner-party conversation as though nothing has happened.
Let’s acknowledge the awkwardness rather than pretend it isn’t there. Then we can work with it.
For me, that honesty makes everything that follows easier.
Keep It Natural
Once we have acknowledged what has changed, I still want things to feel as natural as possible. I don’t want every conversation to revolve around me. Sometimes I may want to contribute. Sometimes I may enjoy listening. Sometimes I may be exhausted.
Inclusion is not the same as constant participation.
And please keep the humour. If we joked before PSP, joke with me after PSP. Serious illness doesn’t require every conversation to become serious.
Tonight, I wished an old friend a happy birthday. He replied, “One more year closer to death.” Given my situation, that could sound spectacularly insensitive. We both laughed. He knows me and I know him.
Equally, don’t manufacture cheerfulness. I have written before about toxic positivity. I don’t need a fake cloud of optimism floating over something genuinely horrible.
Humour is not denial, and honesty does not require misery.
There is one important caveat to all of this. These conversations are difficult by their very nature. Nobody is going to get them right all the time, and adapting to a new way of communicating is a learning process for everyone involved. So don’t be terrified of making mistakes. They are inevitable. I would certainly understand that. What matters far more is that we keep trying to communicate with each other.
Watch Me
Family and friends have an advantage: you know the person. You may recognise when they are interested, amused, frustrated, tired or desperate for a change of subject.
Watch those cues.
My own ability to sustain attention is not what it once was. That doesn’t mean I don’t understand. It means a twenty-minute conversation may be enjoyable, while an hour may be exhausting.
Don’t assume silence needs filling either. Sometimes I may simply want to listen. Sometimes I may have had enough.
And sometimes I am preparing an answer.
Give me the chance to finish it.
Include Me, But Differently
If my speech eventually becomes extraordinarily difficult or impossible, I don’t want people to stop talking to me. I don’t want conversations happening around me as though I am a piece of furniture. And I don’t want people automatically answering questions addressed to me.
Instead, adapt.
Don’t talk over me. Don’t talk for me unless I need you to. Don’t dumb things down. Don’t mistake a slow response for no response. Don’t force me to participate constantly either.
Be honest about what has changed. Keep things natural. Keep the humour. Make space for me and respect my pace.
Ask. Wait. Watch. Adapt.
If one day it takes me thirty seconds to answer a question that once took two, I am still Ben during those thirty seconds. And the answer is still mine.
Losing your voice is frightening enough. Losing your place in the conversation doesn’t have to come with it.
