How to communicate with someone who just lost their speaking?
June 23, 2013 12:02 AM Subscribe
My grandma likely suffered a stroke this past week. She was speaking fine before but now she tries to talk and what comes out is sometimes Yiddish, sometimes Polish, occasionally English, but most of the time gibberish. We know she's still mostly there mentally but of course she is very frustrated.
On top of this new challenge, she is...
-98
-hard of hearing
-nearly blind
-stubborn, as the head of a family might be
-diabetic
-extremely weak, barely able to stand herself up
-nearly useless with her right arm, very weak with her left
There's a whole separate challenge of just getting her up and moved around her room and to the bathroom and such (any advice appreciated there), but my question now is about how to communicate with her. We tried making flash cards but she doesn't seem to want to use them. We tried giving her a pad of paper to try writing, but she didn't even try. Even before this happened she could barely sign her name. Also, it seems she can understand us fine.
How do you talk with someone who lost their speaking?
On top of this new challenge, she is...
-98
-hard of hearing
-nearly blind
-stubborn, as the head of a family might be
-diabetic
-extremely weak, barely able to stand herself up
-nearly useless with her right arm, very weak with her left
There's a whole separate challenge of just getting her up and moved around her room and to the bathroom and such (any advice appreciated there), but my question now is about how to communicate with her. We tried making flash cards but she doesn't seem to want to use them. We tried giving her a pad of paper to try writing, but she didn't even try. Even before this happened she could barely sign her name. Also, it seems she can understand us fine.
How do you talk with someone who lost their speaking?
When I was doing hospice volunteer work, we were told that the vast majority of communication is nonverbal. This was evidenced to me when I had a long series of intimate and cogent communications with a hospice resident who spoke no English to my total lack of Chinese (of any variant).
This was followed closely by series of encounters with someone who had no verbal language. Followed by a novitiate in a silent monastery with sign language from 1098 -- where the received wisdom was 'if there are no words in Cistercian sign language for it, ask yourself whether it needs to be said."
So I don't know how to say this right but I'll give it a shot.
Stop using words. You need them way less than you think. Grandmother need only mske a face if sonething displeases her, and if you are opening your heart and quieting down and taking time, it is very likely that you'll sense what she wants /needs in the first place.
She will be frustrated but that doesn't mean that you must be as well. Frustration is about wanting to say X right now. If you are okay with taking your time to hear what she is communicating, you have removed 50% of the urgency and frustration. Take as your mantra : there are no emergencies. There really aren't. She's 98. She will be dying soon. You can create this big space of acceptance around what is or you can create a cramped space of what used to be and what you wish were so.
One of our precepts in hospice was "cultivate 'don't know' mind." That is so easy to do when you're a volunteer who is meeting someone on new terms and so hard when you have a longstanding relationship with them. But give it a shot. If language is escaping, try touch. Her needs are limited now but we all always crave loving contact. Hold her hand. Pull your chair to her bed so you are facing her eye to eye. Speak from your heart and say :
I love you
You are not alone
You are safe
We will figure this out together
We have plenty of time
Let's say she needs the commode and you don't get it. What's the worst case scenario? A little cleanup. That's all. You really do have plenty of time and there really are no emergencies.
I hope this helps in some way.
posted by janey47 at 12:52 AM on June 23, 2013 [112 favorites]
This was followed closely by series of encounters with someone who had no verbal language. Followed by a novitiate in a silent monastery with sign language from 1098 -- where the received wisdom was 'if there are no words in Cistercian sign language for it, ask yourself whether it needs to be said."
So I don't know how to say this right but I'll give it a shot.
Stop using words. You need them way less than you think. Grandmother need only mske a face if sonething displeases her, and if you are opening your heart and quieting down and taking time, it is very likely that you'll sense what she wants /needs in the first place.
She will be frustrated but that doesn't mean that you must be as well. Frustration is about wanting to say X right now. If you are okay with taking your time to hear what she is communicating, you have removed 50% of the urgency and frustration. Take as your mantra : there are no emergencies. There really aren't. She's 98. She will be dying soon. You can create this big space of acceptance around what is or you can create a cramped space of what used to be and what you wish were so.
One of our precepts in hospice was "cultivate 'don't know' mind." That is so easy to do when you're a volunteer who is meeting someone on new terms and so hard when you have a longstanding relationship with them. But give it a shot. If language is escaping, try touch. Her needs are limited now but we all always crave loving contact. Hold her hand. Pull your chair to her bed so you are facing her eye to eye. Speak from your heart and say :
I love you
You are not alone
You are safe
We will figure this out together
We have plenty of time
Let's say she needs the commode and you don't get it. What's the worst case scenario? A little cleanup. That's all. You really do have plenty of time and there really are no emergencies.
I hope this helps in some way.
posted by janey47 at 12:52 AM on June 23, 2013 [112 favorites]
In the past couple of years, if I am sufficiently screwed up, I open my mouth and out comes German. I understand English just fine but can't speak it. If my sons stick to yes/no questions, I can nod, point and gesture, etc.
A friend who had a stroke was able to type just fine while unable to speak.
Also, can you learn a little Yiddish or Polish? My sons don't know very much German, which makes these incidents problematic, but even a few words can help.
My oldest had a lot of communication challenges when he was little. He does well with reading body language and gestures. So communication is challenging but not entirely absent. It helps. (In my case, these incidents are infrequent and brief.)
posted by Michele in California at 2:36 AM on June 23, 2013 [3 favorites]
A friend who had a stroke was able to type just fine while unable to speak.
Also, can you learn a little Yiddish or Polish? My sons don't know very much German, which makes these incidents problematic, but even a few words can help.
My oldest had a lot of communication challenges when he was little. He does well with reading body language and gestures. So communication is challenging but not entirely absent. It helps. (In my case, these incidents are infrequent and brief.)
posted by Michele in California at 2:36 AM on June 23, 2013 [3 favorites]
Best answer: I can't help you much with the immediate post-stroke adaptation, but it's definitely possible for people to learn to communicate quite well (at least with people who know them well) after a stroke lays waste to their language skills.
My girlfriend's grandfather (I'm just gonna call him Grandpa) had also been a strong, stubborn head of the family type. He was a retired Air Force Colonel and just the kind of gruff, proud, no-nonsense person you might imagine, or so I hear. I met him for the first time several years after he'd had his stroke, and it had made him a different man entirely. This wasn't (we don't think) because of any direct action of the stroke, but because losing his independence forced him to abandon some of that pride and detachment, and he became much more emotionally available and demonstrative. The stroke left him dependent on family for a lot of his physical needs and reduced his vocabulary to maybe 20 or so arbitrary words, several of them profanities (which was hilarious and even touching at times.) Over time he learned to use those few words, and his family learned to interpret them, such that he could communicate quite well. An example: Everyone is sitting around the living room catching up, and during a lull in the conversation grandpa speaks up and says "Way down! Waaaaay down!" Without missing a beat my girlfriend replies "Oh, you want to hear about my trip to Mexico a few months ago?" Grandpa nods enthusiastically, and she fills him in.
My point is, it sounds like your grandmother's personality is still there post-stroke, and her problems are mostly with communication. That's great, because the communication problems can always be worked out. Since she's understanding you properly, you can work on breaking anything that needs her input into a series of yes/no questions, and in general to just kind of give a running monologue about what's going on more than you usually would, giving her the chance to non-verbally interject if you happen to mention something she wants to talk about. Grandpa continued to be a very active participant in family discussions post-stroke, and you sort of naturally learned how to have a conversation in a way that gave him opportunities to make his feelings known. He died a couple years ago, and even though I never spoke to him before his stroke I really do feel like I got to know him, and feel fortunate for the time I got to spend in his company.
So don't worry too much if she's not into the flash cards right now, though it wouldn't hurt to keep them around in case they're useful later. If this just happened last week she's got a lot to come to terms with, and might not even fully understand what has happened to her yet. Strokes can affect the brain in weirdly specific ways, too, so maybe try changing up what's on the cards if you haven't already; if the one with the word "bathroom" doesn't make sense to her, maybe try one with a line drawing of a toilet and another with a photo of her specific bathroom taken from a familiar angle, or even a physical object like a bar of soap or a toilet paper roll instead of a paper card. Keep in mind that this new problem of communication is something for everyone to work on, not just a block for her to overcome. Give her time to adjust and be frustrated, but don't give up on talking to her and be careful to make her feel included in conversation even if she isn't speaking.
Also, do you ever play charades? Grandpa got to be GREAT at charades.
posted by contraption at 3:01 AM on June 23, 2013 [8 favorites]
My girlfriend's grandfather (I'm just gonna call him Grandpa) had also been a strong, stubborn head of the family type. He was a retired Air Force Colonel and just the kind of gruff, proud, no-nonsense person you might imagine, or so I hear. I met him for the first time several years after he'd had his stroke, and it had made him a different man entirely. This wasn't (we don't think) because of any direct action of the stroke, but because losing his independence forced him to abandon some of that pride and detachment, and he became much more emotionally available and demonstrative. The stroke left him dependent on family for a lot of his physical needs and reduced his vocabulary to maybe 20 or so arbitrary words, several of them profanities (which was hilarious and even touching at times.) Over time he learned to use those few words, and his family learned to interpret them, such that he could communicate quite well. An example: Everyone is sitting around the living room catching up, and during a lull in the conversation grandpa speaks up and says "Way down! Waaaaay down!" Without missing a beat my girlfriend replies "Oh, you want to hear about my trip to Mexico a few months ago?" Grandpa nods enthusiastically, and she fills him in.
My point is, it sounds like your grandmother's personality is still there post-stroke, and her problems are mostly with communication. That's great, because the communication problems can always be worked out. Since she's understanding you properly, you can work on breaking anything that needs her input into a series of yes/no questions, and in general to just kind of give a running monologue about what's going on more than you usually would, giving her the chance to non-verbally interject if you happen to mention something she wants to talk about. Grandpa continued to be a very active participant in family discussions post-stroke, and you sort of naturally learned how to have a conversation in a way that gave him opportunities to make his feelings known. He died a couple years ago, and even though I never spoke to him before his stroke I really do feel like I got to know him, and feel fortunate for the time I got to spend in his company.
So don't worry too much if she's not into the flash cards right now, though it wouldn't hurt to keep them around in case they're useful later. If this just happened last week she's got a lot to come to terms with, and might not even fully understand what has happened to her yet. Strokes can affect the brain in weirdly specific ways, too, so maybe try changing up what's on the cards if you haven't already; if the one with the word "bathroom" doesn't make sense to her, maybe try one with a line drawing of a toilet and another with a photo of her specific bathroom taken from a familiar angle, or even a physical object like a bar of soap or a toilet paper roll instead of a paper card. Keep in mind that this new problem of communication is something for everyone to work on, not just a block for her to overcome. Give her time to adjust and be frustrated, but don't give up on talking to her and be careful to make her feel included in conversation even if she isn't speaking.
Also, do you ever play charades? Grandpa got to be GREAT at charades.
posted by contraption at 3:01 AM on June 23, 2013 [8 favorites]
Hmm, I don't know the answer to your question, but I think you might consider a different question. Your grandmother is very old and just had a stroke. She is at the end of her life. Her loss of speech, while probably frustrating to her, might be less frustrating to her than it is to you. This might be an opportunity for you to begin to get used to a life without your grandmother, as she loses parts of her abilities. One thing to consider trying right now is just accepting where she is right now. Be with her without trying to solve anything. I know it's hard to see her frustration. But maybe you just have to be present with her and her frustration. Just show her you love her and try to send her the message that you don't need her to talk to you right now.
posted by latkes at 3:53 AM on June 23, 2013 [2 favorites]
posted by latkes at 3:53 AM on June 23, 2013 [2 favorites]
Variation on others' theme: One week is a VERY short time after physical trauma at any age, let alone 98. All of the caregivers involved need to understand this and pace yourselves to her for a few weeks! Give a gal a break!
Also, medical professionals should have helped you learn how to get her up and to the bathroom, for one thing. There are relatively easy at-home techniques you can learn. I would urge you to get some basics of caregiving training.
posted by thinkpiece at 4:05 AM on June 23, 2013 [2 favorites]
Also, medical professionals should have helped you learn how to get her up and to the bathroom, for one thing. There are relatively easy at-home techniques you can learn. I would urge you to get some basics of caregiving training.
posted by thinkpiece at 4:05 AM on June 23, 2013 [2 favorites]
How are her hands?
You could try to use touch. One finger touching hand = drink, two fingers touching hand = food. Or some other code.
Would it be possible for her to use some kind of clicker to signal you when she has a need? Along the same lines, if she can hold a small device in her hand, say a laser pointer, and her vision is not completely gone, you could print large pictures that she could point the laser to.
If her vision allows for it, switching a light on and off could be used for signaling as well.
posted by travelwithcats at 4:19 AM on June 23, 2013 [1 favorite]
You could try to use touch. One finger touching hand = drink, two fingers touching hand = food. Or some other code.
Would it be possible for her to use some kind of clicker to signal you when she has a need? Along the same lines, if she can hold a small device in her hand, say a laser pointer, and her vision is not completely gone, you could print large pictures that she could point the laser to.
If her vision allows for it, switching a light on and off could be used for signaling as well.
posted by travelwithcats at 4:19 AM on June 23, 2013 [1 favorite]
Is grandma musical? A friend had a stroke and was apparently in much the same condition as your grandma. I wrote out the words to well known songs. My husband took them to the facility where Friend was cared for. Friend could sing - make musical sounds - but not words, so husband would sing the words.
Song therapy for brain injury (including stroke) victims who lose their language ability is how Congresswoman Giffords regained her speaking ability.
posted by solotoro at 5:34 AM on June 23, 2013
Song therapy for brain injury (including stroke) victims who lose their language ability is how Congresswoman Giffords regained her speaking ability.
posted by solotoro at 5:34 AM on June 23, 2013
When my boyfriend was in the hospital and was unable to speak for a long time due to a tracheostomy, the hospital gave us a sheet that had printed on it some very basic expressions with corresponding symbols ("hello", "bathroom", "hungry", "thirsty", "pain" on a scale from 1-10, etc) that he or I coud point to in order to communicate.
We added a few of our own ("love you", for example) that were more personal, specific or even just inside jokes. There was, as well, an alphabet and numbers 1-10 printed at the bottom so that he could spell something out, if necessary as he was still too weak to write at that point.
It would be fairly easy to make something like this for your grandmother on papar or a small dry erase board. You mention that she's weak in the arms, so it would be you pointing to each item until she indicates that you've get to the right symbol or word for what she needs.
Good luck!
posted by marimeko at 6:55 AM on June 23, 2013 [2 favorites]
We added a few of our own ("love you", for example) that were more personal, specific or even just inside jokes. There was, as well, an alphabet and numbers 1-10 printed at the bottom so that he could spell something out, if necessary as he was still too weak to write at that point.
It would be fairly easy to make something like this for your grandmother on papar or a small dry erase board. You mention that she's weak in the arms, so it would be you pointing to each item until she indicates that you've get to the right symbol or word for what she needs.
Good luck!
posted by marimeko at 6:55 AM on June 23, 2013 [2 favorites]
You would benefit from seeing a speech and language therapist. I am a speech and language therapist working in stroke, but your grandmother is not my patient!
One week is very early days for recovery from a stroke. She may recover some of her ability to talk.
There are lots of ways for people who lose speech to communicate and if you're right that she is understanding well (families often drastically overestimate their relative's ability to understand) then these routes are more effective. However, the poor hearing and eyesight are barriers to any techniques I might usually suggest.
I guess it's key to understand how she functioned before - if she could hear well enough to have a conversation before then that shouldn't be the factor stopping her. Could she write at all before? If so and she can't write now, then that's the language and not the eyesight.
Without assessing your grandmother, I can't say what is wrong with her or give specific suggestions. To learn more you should try to get a speech and language therapist, or if that's impossible, then you should learn more about 'aphasia' from places like Canada's Aphasia Institute or the UK charity Connect. You could also try looking up 'dysarthria', and 'apraxia of speech' but I don't have any specific resources to suggest for that.
posted by kadia_a at 1:00 PM on June 23, 2013
One week is very early days for recovery from a stroke. She may recover some of her ability to talk.
There are lots of ways for people who lose speech to communicate and if you're right that she is understanding well (families often drastically overestimate their relative's ability to understand) then these routes are more effective. However, the poor hearing and eyesight are barriers to any techniques I might usually suggest.
I guess it's key to understand how she functioned before - if she could hear well enough to have a conversation before then that shouldn't be the factor stopping her. Could she write at all before? If so and she can't write now, then that's the language and not the eyesight.
Without assessing your grandmother, I can't say what is wrong with her or give specific suggestions. To learn more you should try to get a speech and language therapist, or if that's impossible, then you should learn more about 'aphasia' from places like Canada's Aphasia Institute or the UK charity Connect. You could also try looking up 'dysarthria', and 'apraxia of speech' but I don't have any specific resources to suggest for that.
posted by kadia_a at 1:00 PM on June 23, 2013
Response by poster: About a month after my grandma had her stroke, she passed away. But during that month, we were able to speak with her well enough to make her comfortable and occasionally happy.
Because of other physical issues, she was basically unable to mime out what she wanted to say. But given our close relationships with her, we were able to break everything down into a series (sometimes a long, frustrating series) of yes or no questions.
Do you want tea?
Do you want a candy? (these helped her with her dry mouth)
Do you want a hug?
Do you want me to turn the lights off?
Do you want me to tell you about my week?
Do you want me to leave you alone? (she was always concerned that she was a burden on my mom, who had spent a great deal of the last 3 years taking care of granny and lost a lot of sleep, and sometimes this meant we were unceremoniously told to GO. It's OK, though, we understood)
Thank you all for your caring responses.
posted by cman at 6:06 PM on July 31, 2013 [3 favorites]
Because of other physical issues, she was basically unable to mime out what she wanted to say. But given our close relationships with her, we were able to break everything down into a series (sometimes a long, frustrating series) of yes or no questions.
Do you want tea?
Do you want a candy? (these helped her with her dry mouth)
Do you want a hug?
Do you want me to turn the lights off?
Do you want me to tell you about my week?
Do you want me to leave you alone? (she was always concerned that she was a burden on my mom, who had spent a great deal of the last 3 years taking care of granny and lost a lot of sleep, and sometimes this meant we were unceremoniously told to GO. It's OK, though, we understood)
Thank you all for your caring responses.
posted by cman at 6:06 PM on July 31, 2013 [3 favorites]
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