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A subject I did not want to discuss, and had pushed off for a while, came up this morning.
A neighbour, who is a professional in the field, walked us through the use of communication boards for when, or if, I reach the point where I can no longer communicate effectively myself.
Of course I don’t want to hear this. And of course I don’t want the time to come when I’m dependent on something like this.
But it was a very important discussion, and one I realised I hadn’t really given enough attention to before. So I want to share what I learned.
We, the patients and loved ones dealing with PSP and other diseases where cognitive or communication decline can be part of the diagnosis, need to give thought to how we’re going to communicate with each other before it becomes an issue.
If we don’t, it can cause frustration, misunderstanding and a whole world of other things I hate to think about.
And this is one problem where we can at least do something in advance.
We can talk about it.
We can prepare.
We can work out what matters to us and how we want to communicate it.
I’ve written quite a lot recently about kindness, empathy and the extraordinarily complicated relationship between a patient and the people who love and care for them.
This, I realised this morning, is one of the practical manifestations of all of that.
Kindness and empathy are not just about how somebody feels towards you. Sometimes they need practical tools behind them.
A communication board can help somebody understand whether I am in pain, frightened, uncomfortable, hungry, tired or simply want to be left alone. It can help me say what I want to eat, where I want to go, who I want to see or what I want to do.
Most importantly, it can allow a conversation to continue when conversation itself has become difficult.
And perhaps that is part of making sure that, as communication becomes harder, empathy remains, kindness remains and love remains.
Following the discussion, I created my first attempt at a communication board using Claude/ChatGPT. I have now turned it into a more generic template that other people can use, taking out some of the personal things that relate specifically to me.
It is not perfect. It is a first attempt.
But hopefully it is useful.
The idea is that the board could be put onto an iPad or computer, or printed and laminated. How you use the technology is completely up to you.
More importantly, it should be edited and tailored to the person who may need it.
If they love tacos, put tacos on it.
If they like walking in the park, add that.
If there are particular foods, people, places, routines, symptoms, feelings or things they regularly need to communicate, build those into it.
The point is not to create the perfect generic communication board. The point is to create something that allows one individual to communicate as broadly and effectively as possible with the people around them.
Template Link → https://1drv.ms/p/c/c9fd23cd51aa6240/IQBd4Ark_K_fRLzl1Uk0MCVJAeeo0n0L5kwgd5X7oD61iU8
If you already use a communication board, or have alternative templates that you think could help other people, please feel free to share them with me by emailing benlazpsp@gmail.com.
I hadn’t realised quite how important this subject was until this morning, and I am genuinely appreciative of the friend and neighbour who took the time to walk us through it. I would like to thank her for helping us think about something that neither of us particularly wanted to think about.
Please G-d, I don’t need to use this for a very long time.
But I think the sensible thing is to prepare it while I can communicate exactly what I want it to contain, and then continue to tailor and iterate it as my condition changes, if it changes.
Because preparing a communication board is not accepting that communication is going to disappear.
In some ways, it is doing the opposite.
It is trying to protect communication in advance.
The aim is that, if the day ever comes when I need it, it will already be fit for us as a couple and as a family.
And hopefully, even if communicating becomes much harder, it can help make sure that understanding remains.
That empathy remains.
That kindness remains.
And, most importantly, that love still has a way of being communicated.
I hope somebody else finds the template useful too.
