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 spacetolet
Joined: 12/30/2008
Msg: 1
Talking with a stroke victimPage 1 of 2    (1, 2)
My Dad had a stroke last year that seriously compromised his speech. He can understand me when I speak, but his response to everything is "berry berry." Those are the words he uses for everything. He also can't manipulate objects very well since his right arm is paralyzed.

I want to visit him more often but it is like some kind of torture trying to communicate with him. And the time moves like molasses when I am with him. Can anyone suggest things we might do besides talk? Or how I might communicate with him more effectively?
 rockchick24/7
Joined: 9/10/2005
Msg: 2
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Talking with a stroke victim
Posted: 2/12/2009 3:16:14 PM
Can he write or type with his left hand? That may be another way of communicating. Even if he can't write, typing on a keyboard may be much easier for him to manage...one finger typing may be slow but it's a much better way of communicating than just being able to say "berry berry".

What about reading to him...doesn't have to be books, could be a newspaper or magazine on a subject that interests him.

Also, what about board games..maybe chess or checkers.

What about going for a walk (I assume he can go out in a wheelchair)? Is there anything your Dad is into that you could incorporate into your outings (such as museums, parks, places of interest etc.)?

I know it is frustrating for you but I guarantee it is twice as frustrating for your dad because at least you can talk freely and communicate to him.

Hope you can find something to make your visits easier and more pleasurable for both of you.
 spacetolet
Joined: 12/30/2008
Msg: 3
Talking with a stroke victim
Posted: 2/12/2009 3:28:33 PM
Thanks Rockchick, I think I'll bring my laptop along next time and see if he can use the keyboard.

I have tried taking him for rides in the car through the local park but he gets aggravated rather quickly and wants to go home.

I'll think I'll try some easy games as well and see how it takes to them, as you suggested.

When he was in the hospital he didn't like to be read to, but he may be more amenable now.

And I know just how frustrating not being able to talk is for my father. He was a very loquacious man before the stroke. He still is; only now no one can understand him.
 SAguy_06
Joined: 12/29/2005
Msg: 4
Talking with a stroke victim
Posted: 2/12/2009 3:32:40 PM
Just remember all the time he spent waiting for YOU to be able to communicate with him...Im glad he didnt give up on you.


Is it chilly in here?
 spacetolet
Joined: 12/30/2008
Msg: 5
Talking with a stroke victim
Posted: 2/12/2009 3:37:09 PM
As helpful as always SAguy. Thanks.
 junipermoon
Joined: 3/1/2006
Msg: 6
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Talking with a stroke victim
Posted: 2/12/2009 4:15:45 PM
i've heard several stories where stroke victims who have lost the ability to speak can still sing. it makes little sense, but i've heard physicians, therapists and vocalists speak about song sessions they've done that really helped the person express theirself. apparently the part of the brain responsible for song can still operate when the speak function fails. someone with a medical background can explain it better than i can. but, from the reports i've heard, it's a real phenomenon and might be worth looking into.
 Taralaraa
Joined: 9/1/2007
Msg: 7
Talking with a stroke victim
Posted: 2/12/2009 5:16:13 PM
^^^^^ Hey, I've heard this too... singing is like perfume. Cant remember where I read it and have no references to help. But you know when you can smell a perfume it takes you somewhere else.... singing is similar, even being sung to may evoke memories which may lead to other synapses to enable talking.... worth googling at least...

Rockchicks post was brilliant.....

My best wishes to you and your dad.....
 meoowzie
Joined: 2/21/2008
Msg: 8
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Talking with a stroke victim
Posted: 2/12/2009 5:36:27 PM
yes it is very diffulcult. some storke victums are learning sign language, some still cannot learn that due to the area in which the tramua happened in the brain.

here is a GREAT way to talk with your dad. i work with stoke victums at times. do most of the talking that will take a yes/no answer from him. i know he should be able to nod or shake his head in responce to them.

maybe a picture board for some things that you guys would have talked about; pics of family friends, activites etc.

intenses speech therapy MAY help, but it also do nothing.

pleasssssssssse still visit him. i KNOW it is so frustrating. he is probably understanding EVERY words you say. his responces are just locked in his head. :(

He also can't manipulate objects very well since his right arm is paralyzed <<< does he not get therapy for that??? there has been many studies ( my dad had polio) that IF there are FREUENT repetative exercises of a "dead" limb, it can recover to some degree. you can learn how to do them and come in every day or so and do them for hourssssssss.

also, briung in music that he loves, yu can just sit there with him to his music. bring in pics of new discoveries you have had.
 chameleonf
Joined: 12/22/2008
Msg: 9
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Talking with a stroke victim
Posted: 2/12/2009 6:00:18 PM
My mother was totally disabled with a stroke before succumbing to a final series of them in the end. Although she had the use of one side of her body, she didn't know what to do with it. She couldn't talk, feed herself and was fed via a gastro tube for those entire 6 years. I found it extremely difficult in that case because she didn't even know who she was, let alone who I was. As frustrating as it is for you, think of how frustrating it is for him to be locked inside that body that won't cooperate. Intensive therapy didn't help in her situation, however, it may with your father. We, of course, live in Canada so the medical system is much different than yours. Speak with hospital staff and ask questions to see how you can personally aid in bringing his level of function up. If they can't offer much, educate yourself through the library or the internet. Join a support group if you can. Your frustration factor can be much lessened, as can his, when you start seeing some of your work pay off. Every little thing is a huge milestone.

Bring pictures of people he knows, say their names, post them in areas of his room he's allowed to have them.

The worst thing you can do is to avoid visiting him - for both your sakes. The more often you do it, the easier it becomes, especially if you take the time to help him. It's a huge undertaking but it can be very rewarding .

Good luck and best wishes for both of you.

Edit: I see he's no longer in the hospital after further review. So, yes, educate yourself. Google "rehabilitation after stroke" or similar keywords and a wealth of info will be at your fingertips.
 misscrissee
Joined: 10/20/2008
Msg: 10
Talking with a stroke victim
Posted: 2/12/2009 7:05:58 PM

I want to visit him more often but it is like some kind of torture trying to communicate with him.


That poor man...I can only imagine how HE must be feeling...I am astounded by your level of compassion for your own father...
 Cobra442
Joined: 10/7/2008
Msg: 11
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Talking with a stroke victim
Posted: 2/12/2009 7:46:55 PM
First let me say, I am in now way a doctor.
But my Mom also went thru the same thing, we call her left arm "fred".
It is extremely hard for not only you and your family, but it is tearing him up inside, maybe he just can't get the words formed and then he gets frustrated.
Typically a stroke paralyzes one side of the brain, and that effects the other side of his body.
My mom had hers in 2000 he she has battled through, but it has been so frustrating for her. I think of it like this, she has to learn how to do all those things she could before. or at least most of them. Baby steps, and slowly the brain will work around the troubled spots.
Especially concentrate on communication, that is his key to the outside world. We tried alot, and finally came up with a notepad...like in school...and she would write/scribble, as best she could using her good non-primary arm.
We called ours her memory book. easy to write on, lots of pages, maybe have a pen attached.
Then after time, u get used to what they are trying to communicate.
hope this helps,
Best of wishes

lol...when i first saw her after the stroke...we were trying to lift her spirits...so I said, "Hi, do you know my name?? It is Bill Gates, I am your son"
Cracked her up, and for like a yr after the stoke, she still called me that with a laugh... and i know i can still call her and say, "Hi, it is your son, Bill Gates" and she CRACKS UP!
 Ideoform
Joined: 9/23/2007
Msg: 12
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Talking with a stroke victim
Posted: 2/12/2009 8:17:59 PM
Music, singing, and using a "singsong voice" can really work. Music integrates the two sides of the brain, and even can help in healing injuries to the brain.
Instrumental music can help in the background, too.

Bring pets, dogs, cats, rabbits, ect... they can relate in non-verbal ways even better than we can sometimes.

Both of you, use lots of body language; facial expressions, sighs, sounds, physical humor, use lots of gestures and eye contact. Don't forget hugs, and simply holding hands.

There are sets of cards you can buy for use with non-verbal children with autism. The entire method is called PECS (for picture exchange communication system.) You can make your own too. They just show lots of pictures of everyday things that people normally want to communicate. Print out or draw a picture on a card, laminate it, and hang them on a ring. Start with the "basics" like water, bathroom, too hot, too cold, hello/welcome, goodbye, miss you. Have one for all the emotions: happy, sad, mad, frustrated, hopeful, tired, something hurts. Have one for each family member with their name on it. All he has to do is find the right card. You can have different rings of cards for different categories of things, or you can put them all up on a bulliten board and he can simply point to the one he wants.

To personalize it more, imagine him before the stroke and think of what he most commonly would say. Then you can put these phrases onto cards and laugh about them. But he might enjoy using his own favorite "pat phrases" again, even though they are pre-printed out. You can even put his favorite tired old jokes on them, or whatever he loved to tease about, things like that. Make sure to include other types of "favorites" like favorite foods, type of clothing, music, books, interests, ect...

If he can type, maybe he can use the typing system for the phone that deaf people use;
A telecommunications device for the deaf (TDD), also known as a text telephone to telephone typewriter (TTY.)

There are forms of communication devices that allow a person to type in something and a voice speaks it. Some of it is simply software you add to your computer (there's a free one, somewhere, too.) And sometimes it is a separate device that's a bit smaller and easier to manage. You can also get some that have pictures instead of letters on the buttons, if he can't read anymore. He would press the button with a picture of a glass of water, and the word "water" or "I would like a glass of water, please" will be spoken. For children, you ask for an "assistive technology evaluation" but for adults, I am not sure how this is done in an institutional setting. A speech therapist can evaluate him and make technology suggestions that would work best given his abilities and limitations.

If he is very frustrated, I like using this Communication Bill of Rights to help with making life more normal. You can print this up and post it in his room for other caregivers to see, and use this when discussing his care with staff.

"All persons, regardless of the extent or severity of their disabilities, have a basic
right to affect, through communication, the conditions of their own existence.
Beyond this general right, a number of specific communication rights should be
ensured in all daily interactions and interventions involving persons who have
severe disabilities. These basic communication rights are as follows:

1. The right to request desired objects, actions, events, and persons, and to express
personal preferences, or feelings.
2. The right to be offered choices and alternatives.
3. The right to reject or refuse undesired objects, events, or actions, including the right
to decline or reject all proffered choices.
4. The right to request, and be given, attention from and interaction with another person.
5. The right to request feedback or information about a state, an object, a person, or
an event of interest.
6. The right to active treatment and intervention efforts to enable people with severe
disabilities to communicate messages in whatever modes and as effectively and
efficiently as their specific abilities will allow.
7. The right to have communicative acts acknowledged and responded to, even when
the intent of these acts cannot be fulfilled by the responder.
8. The right to have access at all times to any needed augmentative and alternative
communication devices and other assistive devices, to have those devices in good
working order.
9. The right to environmental contexts, interactions, and opportunities that expect and
encourage persons with disabilities to participate as full communicative partners with
other people, including peers.
10. The right to be informed about the people, things, and events in one's immediate
environment.
11. The right to be communicated with in a manner that recognizes and acknowledges
the inherent dignity of the person being addressed, including the right to be part of
communication exchanges about individuals that are conducted in his or her presence.
12. The right to be communicated with in ways that are meaningful, understandable, and culturally and linguistically appropriate."

~National Joint Committee for the Communicative Needs of Persons with Severe Disabilities
 Megaladonfishy
Joined: 5/7/2008
Msg: 13
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History
Talking with a stroke victim
Posted: 2/12/2009 8:25:29 PM
break out the family photo album
 meoowzie
Joined: 2/21/2008
Msg: 14
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Talking with a stroke victim
Posted: 2/12/2009 8:34:48 PM
Ideoform, thanks for the communications bill of rights.

i have worked as an interpreter for the Deaf and am now working as an rn i=on a rehab unit (not the drug type).

i plan on sending the rights onto both jobs

great information for the op
 ~~starlight~~
Joined: 11/28/2008
Msg: 15
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Talking with a stroke victim
Posted: 2/12/2009 8:44:23 PM

lol...when i first saw her after the stroke...we were trying to lift her spirits...so I said, "Hi, do you know my name?? It is Bill Gates, I am your son"
Cracked her up, and for like a yr after the stoke, she still called me that with a laugh... and i know i can still call her and say, "Hi, it is your son, Bill Gates" and she CRACKS UP!


That is so sweet cobra, and makes me giggle too.

OP why does it bother you that he cannot communicate or why the need for talk? Was he someone who gave you advice and who you talked to when something was bothering you? Is a lot of his care falling on your shoulders?

There are other avenues one can communicate~~holding hands, looking right into their eyes, humming and singing. Reading them stories, news events, showing some pictures or relating happy memories. What is wrong with silence? You can visit with him and do a hobby that you like~~whether that be knitting, crocheting or scrapbooking. As long as you are spending time with him and enjoying the time you DO have with him, you will create memories.

When my grandma had cancer she was drugged up to a point where I didn't know who she was. One day she was babbling like a baby, pulling at her tubes and not making sense. I sat there and cried and then left. I couldn't stand to see her suffering and I knew she would have never wanted me to see that. I was devastated. A couple of days later she was fine again and alert. It was up and down, we never knew what to expect. I decided to make a huge mural for her room with pictures of everyone and had all the great grandchildren draw pictures and we added to it as much as we could. After she died the nurses told me how she would talk about that mural and were surprised at how much she recalled and how she was so proud to talk about the pictures. When she wasn't feeling well and couldn't talk, she would still stare at the new things we put on that wall. Grandma couldn't always talk but I always saw in her eyes how much she loved us all.

Long story huh? The point is, you don't always have to be "communicating" sometimes being in the presence of your loved ones is "enough"

You've gotten some good ideas in this thread, hopefully you find one that suits you and your dad.
 oddandy
Joined: 3/5/2008
Msg: 16
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Talking with a stroke victim
Posted: 2/12/2009 8:44:31 PM

i've heard several stories where stroke victims who have lost the ability to speak can still sing. it makes little sense, but i've heard physicians, therapists and vocalists speak about song sessions they've done that really helped the person express theirself.


This is true. My grandmother lived with me after her stroke, and while the only thing she could speak was "up up up" (/shrug) she WAS able to sing sentences. Makes no sense to me, either, but it's true.

As far as what you can do with him, if it were me I'd try playing cards, dominoes, etc. The damn thing about being a stroke victim is that you're "all there" on the inside, you just can't communicate well anymore.
 4realRU
Joined: 4/7/2007
Msg: 17
Talking with a stroke victim
Posted: 2/12/2009 11:11:13 PM
Other than the previous suggestions OP, I'm sorry, I have little to offer you as far as advice. Some very sound advice has been given I might add. But your present situation did strike a cord here, as I am sure it did many. I lost my Father less than a year ago. Anyway, maybe this is on topic, maybe it's not, but here's a poem for you.

I once knew a man, so strong and full of life,
he was always on my side, be I wrong, or be I right.

T'is my Father I speak of, in his eyes I could do no wrong,
now I find myself in troubled waters, all due to his recent plight.

How do I talk to you, what can I say,
so you'll know that my love for you will never go away?

Berry Berry is all he can say!
But listen my loving daughter, these words you do not hear.

I love you my daughter, a love with no end,
for onto this Earth I helped bring you, you alone were my Spring.

Spring and Summer have passed me, Fall history now as well,
I am in the Winter of my life, now it is time to say my farewell.

You are a beautiful daughter, a real reason for my life,
if only this world could see you through my eyes, what pure beauty would alight.

Be there for me when you can, that I will always cherish, and never ever, ever forget, that I have always loved you, Berry, Berry much.

Signed,
All Fathers
 spacetolet
Joined: 12/30/2008
Msg: 18
Talking with a stroke victim
Posted: 2/13/2009 12:18:17 AM
4realru--That was so sweet and made me cry. Thank you I will share that with my father and the rest of my family. Sorry about your loss.

Lola-- Communicating is very important to my father. Talking is what he wants to do. He loves to chat. When he had his stroke initially he was very tired and slept of course so I did things like just sit by his bed side. But now he is active and needs stimulation. I just am not very good at it . Thanks for your thoughts.

Wingsonmyfeet--Family photo album is a great idea.

Ideoform--If he could use the TTY that would be great. He would love that. He loves to talk. Thanks for that and all your other suggestions.

Cobra--Fred that is funny. Yeah my Dad still loves a joke and he is basically in pretty good spirits. We tried the notepad, but that didn't go over so well. It seems that the not only was his speech affected but his ability to write. But I am going to give the laptop a try see how that goes over.

Misscrissee--What can I say you are always a ray of sunshine.

chameleon--I am so sorry about your mother. That must have been so difficult. Thanks for your suggestions.

Meowzie--My dad likes to talk. You might even say he lives to talk. He is that talkative. But I'll think of some yes or no questions for him. Though he has been known to get them confused and he'll shake his head no while saying yes. Thanks for the suggestions.

junipermoon and tarlaraa-- I will definitely give the music a try. Someone else suggested listening to favorite songs together which sounds like a great idea. We used to go to folk festivals when I was a kid so old folk albums would bring back a lot of good memories. I will ask his wife if music has been on his agenda in his therapy.

Oddandy--Thanks for your thoughts.

Rockchick--Again great post lots of excellent suggestions.

Just an addendum as some people think I am some kind of horrible person for having difficulties doing this. I never intended to see my father less but to increase my visits. I just needed some help to keep things interesting for both him and me.
 yna6
Joined: 1/21/2007
Msg: 19
Talking with a stroke victim
Posted: 2/13/2009 5:52:07 AM
Ok....was it only the arm and the speech that was affected?
My dad had the whole right side paralyzed, all functions lost. Half blind, hearing impaired, right side of the body paralyzed, partial kidney failure, etc, etc. the whole works. The guy was dead more often than alive for the first few days. But, for some odd reason, he kept coming back.
It took over two years of constant care, mostly at home, just for him to be able to speak again. Even years later, he still didn't have his whole speech back. Get the odd unclear word, he didn't have the "gift of gab" as much as he used to, etc.
He became a writer, at my insistance. Hunt and peck with the left hand on an old manual typewriter.
He wrote lot over the years...and through those stories and poems, I got to know the man.
Don't be treating him as a child or speaking to him as such...he's a man, not some retard kid or something. (To those who have 'slow' kids, don't be freaking on me for this useage of wording.)
Talk about things HE likes. Keep him up on the news...not just family stuff, but local and world.
Ask him to write down what he'd like for meals. Remind him that recovery is in his ballpark...he's not done living yet! He may feel inadequate. (Half a man) He isn't and has to be reminded of that. (I would not advise getting him a hooker....some people frown on that kind of thing, or he may not be 'up' to it....but, some people have used that type of 'therapy' to remind stroke victims that they ARE still alive.)
Get the old tennis ball out, and have him squeeze it while watching tv...helps a lot to regain autonomous control over the hand and arm.
Having lived with my dad and cared for him for years, I learned a lot on how to help people in that situation. Wishing you luck!
 meoowzie
Joined: 2/21/2008
Msg: 20
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Talking with a stroke victim
Posted: 2/13/2009 6:30:59 AM
speak was "up up up" (/shrug) she WAS able to sing sentences. Makes no sense to me <<

same with stutterers. that country singer who stutters so much can sing beautiful.

sing comes from a different part of the brain than the speech center is. so when one sings, they are using the part that wasnt damaged. it is well worth the try. now, there may be damage to that portion of the brain also, and then singing would not be a solution.
 spacetolet
Joined: 12/30/2008
Msg: 21
Talking with a stroke victim
Posted: 2/13/2009 5:16:31 PM
yna6==Thanks for sharing your story. Yes, my dad has lost most of the functioning on his right side. I don't think it is as extreme as your father. He has lost the use of his right arm and right leg and I know he has difficulty hearing out of the right ear and seeing out of the right eye. No kidney failure, but he is incontinent now. I am glad your dad was able to regain so much functioning.

I visited my Dad today and brought the laptop. He can't write anything coherent. So we can't communicate per se. So I typed words relating to Valentine's Day and he would try to copy them and say them. He was able to find about two letters to a word. It was nice to have some kind of focus for our get together. Next time I am going to bring along a photography book from the library. I also plan to make a few of those cards one of the posters was talking about. Forgive me if I forget who it was who suggested it. Thanks again people this post has been invaluable to me. I guess I better print it out before it disappears.
 psssst
Joined: 6/4/2007
Msg: 22
Talking with a stroke victim
Posted: 2/13/2009 5:32:17 PM
From first hand experience, it will take a full year for the damaged areas of the brain to heal to the final point. During that year, the synapses are firing looking for alternate routes to finish the path to the receptors and regain control of the musculature and other functions that determine how we speak, think, move and react.

You should also note that the recovery process isn't complete after that initial year, then the muscle tone and strength regeneration are things that the physiotherapists will target.

Recovering from strokes is one of the more difficult things that a person will do in their life... more than anything, they need the support and understanding of people around them as it would be a very vulnerable time in their live... losing the ability to communicate with another person as well as losing one's independence.

No matter how difficult it is on you OP, seeing your father in this situation... you need to remember that it's him dealing with this 24 hours a day, 7 days a week. Imagine his torture...
 misscrissee
Joined: 10/20/2008
Msg: 23
Talking with a stroke victim
Posted: 2/13/2009 6:23:05 PM
Let's read what you initially wrote again, shall we:


I want to visit him more often but it is like some kind of torture trying to communicate with him.


The way I see it, you are only looking for validation for NOT spending more time with your father...I would do ANYTHING to have one more HOUR with my loved ones who have since passed away from a devastating illness - even if that hour was spent in total silence...


Misscrissee--What can I say you are always a ray of sunshine.


Just calling it like I see it...Hopefully, if and when you develop a life altering health condition, your loved ones will have a bit more compassion...
 parallax
Joined: 11/23/2005
Msg: 24
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Talking with a stroke victim
Posted: 2/13/2009 9:56:18 PM
OP, your aggravation is normal. Both the family and the patient want things to be the way they were, and adjustment is never easy.
Recovery time for a stroke will often take more than a year, as psssst stated. Recovery occurs mostly in spurts, and isn't linear in progress.

Just sharing time with him is a form of communication. If you share the same sense of humor, try doing facial shapes with one another - they're exercises used to re-train speech. I wouldn't push that if he wants to do them only with the therapists. Patients will feel vulnerable while they find their own personal boundaries; self-discovery isn't always fun in front of an audience.

Music will sometimes do wonders, whether it's just listening, playing and instrument, or singing.

I really liked the suggestion of the family mural. Photographs on a felt board would work similarly.
 ~~starlight~~
Joined: 11/28/2008
Msg: 25
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Talking with a stroke victim
Posted: 2/13/2009 11:08:52 PM

I want to visit him more often but it is like some kind of torture trying to communicate with him.




The way I see it, you are only looking for validation for NOT spending more time with your father...I would do ANYTHING to have one more HOUR with my loved ones who have since passed away from a devastating illness - even if that hour was spent in total silence...


Oh c'mon MissCrissee I don't think the OP meant that it was torture to spend time with her father. Trying to communicate with him was hard~~because he couldn't communicate back. Sheesh have a little compassion for a badly worded post.
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