Don’t talk about them as if they’re not there
Sometimes we don’t know how much a stroke survivor can understand, especially if they are not able to respond. It’s a good idea to always presume someone can hear and understand us. This means:
- Talking with them like you usually would
- Including them in the conversation
- Only talking about things you want them to hear
This is what Mum said, when she had her stroke. She may not have been able to respond, like she was partly in a coma, but she said she heard everything. She could hear us arguing, she could hear everything. She remembers every conversation that was said at her bedside. She remembers Dad growling us. See what I’m saying? So she knows, but at the time she couldn’t respond. And when she came through the coma and then she couldn’t even do any of this, but she could hear and see everything.
Remember the personality of the stroke survivor. If s/he didn’t talk much before that probably won’t change with the stroke:
Jimmy was never a conversationalist… he never used to talk, so nothing’s new, and now everybody’s wanting to talk and make conversation
Some people who have had a stroke swear, even if they never used to swear. This can be embarrassing, especially for whānau, but try not to stress about it. Click here for a short article about how to deal with swearing.
Swear words, swear words she could use. As clear as a bell. Yes, roll those off the tongue just like nothing, just like toffee.
Helping people won’t make them lazy
Whānau, remember that people with stroke try their hardest to communicate and they need your help. Helping the person to communicate will not make them lazy or make their communication problem worse.
If the message gets communicated that’s ok, don’t worry if it’s not perfect. The most important thing is to make communication as relaxed and successful as possible.
Find out how the person with stroke likes to receive help. Some people like help to find the words and other people don’t like people finishing their sentences for them.
– She’d be going, “oh yeah, yeah, yeah”, like this, and you could see, it was just on the tip of her tongue, so she knew. But then by the time she went to say something and then Dad, trying to be helpful…
– Put some names into her mouth.
– Yeah, and then she’d say “no, no, no”, like this, and then she’d end up getting upset
People with stroke can accidentally say the wrong word. Sometimes this means that the wrong message gets across. Everyone needs to know about this so there aren’t too many misunderstandings.
With Mum’s speech, she’ll say “he” instead of “she”, “she” instead of “he”… Or she’ll talk about her eyes when she means her ears… But having lived with her I can actually either work out what she means.
After a stroke communication can take a lot of time and a lot of patience. Try to make time to communicate. People’s preferences can change after a stroke so don’t presume you know what the stroke survivor wants. Have a conversation with them. Take every opportunity to communicate.
Some stroke survivors take a long time to process what they hear and then respond. Here are some ideas that might help:
- After you have said something keep quiet to give it time to sink in
- If you need to repeat what you have said, use exactly the same words the second time. This means that the person doesn’t have to process a whole new set of words
- Allow plenty of time for the stroke survivor to say what they want to say. Or as the Kaitaia Chat Group put it,
“Shut up and wait! Don’t put words in our mouths”.
At first we were too fast for her. We’d go dadadadada, and she just looked at us blank, we knew straightaway. And so we had to, like we’ve all realised now we have to sit down and talk to her face, straight face, eye to eye, and then slow
She could hold a conversation with you but that’s only because, like I said before, we would allow her, we would give her the time and sort of just sit there and drink cups of tea. And when she was ready she’d go “oh yeah, and so and so, so and so”. Conversations went really really well when there was only her and us and the kids
Some people find mirimiri or massage helpful.
We even took her to do some mirimiri, our Māori side. And yeah, she did really well with that cos she’s a Christian, you see. So I didn’t want to go past those boundaries of Christianity and our Māori spiritual side, so I had to kind of fib and tell Mum that you’re getting massage “Mum, you’re going for a massage”. And she goes “oh, okay”. Soon as we got there they said a lot of things to her. And blimmin heck she heard it all. And she goes “it’s mirimiri, eh?” And I’m like “yeah, massage in English” (laughter). And she goes, “no, they said everything right, hey?” And I went “yeah”. I was glad, yeah.
There are different kinds of questions and some are easier to answer than others.
The easiest question is a yes/no question. These are questions that the answer is either yes or no. For example, “are you hungry?”
Some people with stroke accidentally say yes when they mean no, or no when they mean yes. They might not know that they made a mistake, so make sure you get the right answer.
If yes/no is not clear, draw up a piece of paper like this:
Then ask the person the question again and point to the options saying “are you hungry? Yes? (point to yes) or no? (point to no) Show me”.
The next easiest questions have two options. For example, “would you like spaghetti or baked beans?”
It is easier to answer this question if the options are there, e.g. if you are holding a can of spaghetti and a can of baked beans so they can point to their choice.
Then there are Short answer questions. For example, “what would you like for lunch?”
It is easier to guess the answer to these questions because you know what the topic is.
Open questions usually need more than a short answer, e.g. “what shall we do tomorrow?” or “what do you think about global warming?” These are the hardest questions to answer when you have trouble talking.
I used to try and guess all these things, and now I’m more saying no, no, think about what you want to tell me. And we isolate it down now, we put it into boxes until we get the right answer.
Putting the different types of questions together
Gayle learned how to help Jimmy to communicate by the way she asks questions. You can use these different types of questions to help communication. Start with very broad questions until you know the topic.
For example, Is it something you need? Is it about a person? Is it inside the house?
Then start to narrow it down.
For example, If it is about a person, is it someone in the whānau? Someone from work? Someone at the hospital?
Plan for hui, parties and other gatherings
Most people with stroke find it easiest to communicate in a quiet place with not many people. Events like hui can be hard. Some people like to be part of it even if they can’t talk as much as they used to, but other people don’t like to go at all.
It might help to make a plan before you go. Decide:
- What you would like people to know about the stroke
- How people should help the stroke survivor to communicate
- How it is best to communicate this information
Try to find a quiet place to rest if it all becomes overwhelming. Be prepared to leave early if you need to.
The truth is they do talk with me [but] they can’t actually concentrate all the conversation on my little short sentences and whatever. And I actually enjoy the actual being part of the group. In fact it’s important for me to be part of the group even if I miss half of it, because I don’t always want to say, unless I’m really- sometimes I say hang on, hang on, what did you say just then?
Keep a diary
Some whānau told us it was really helpful to keep a diary of what happened each day after the stroke. This can help communication so visitors know what has been happening. It is also a record you can look back on later to see how far you’ve come.
From the day he had his stroke, I wrote in the diary every day until he left hospital… Because stroke victims can’t normally remember what happened, and that was huge, quite often I’d go back and read it and think oh wow he’s come from there, wow, to there! And that was really good… Mind you he probably didn’t see a lot of it, but it’s always there for him to read later on if he wants to
You can make a difference
Whānau, friends and community members make a big difference to people with stroke. Sometimes you can make things worse, even when you’re trying your best:
My progress is limited to how they deal with up home… I know about what I’m um yeah but other people don’t want to face that I can’t do it anymore
Yous are trying to help and here’s us stopping, well, the family. It’s not actually the patient sometimes. It could be the family that’s stopping her growth from the speech language and all that therapy.
You can also make things better:
And my friends always for meetings for the marae and all the interests I’ve got my friends take and pick me up and things like that and we have heaps of conversations so that our world was upside down for a while but when I come to I um out of the hospital my friends were coming and taking me places… Yeah, was good.
It’s the families you’ve got to target. The patient will be fine if the families understand.
My only support was my family coming in every day… an invaluable support.