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SandyCaregiver

Stroke Caregiver - female
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About SandyCaregiver

  • Rank
    Chief Mentor

Shared Information

  • Stroke Anniversary (first stroke)
    02-29-2012
  • Interests
    crochet, knittng, quilting, Latino Soaps. Dabbled in most crafts, but now have no time for them, hopefully some day.
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Registration Information

  • First Name
    Sandra
  • State
    NV
  • Country
    United States

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  1. Please do not talk fast and have a lot of different commands like, "ok, stand up, turn around and let's go.... my husand could not separate all the different things being said to him - one idea, one command at a time. like "ok, now lets stand up" after you get them stood up, "ok, now let's turn around" they turn around. And don't use flowery speech. I practiced with my husband every single day to say his name, address and phone number. Over and over, "what's your name, etc. So one of those phone calls where I tell them I'm speaking for my husband and they say they need his permission, I tell them he has aphasia, so be patient with him in his trying to get his words together and keep it simple. So hubby is feeling confident, thinking he can answer what's your name/you name, please or your first name - what does she do? as soon as he gets on there she turns in to compeltey different person that talked to me (simple and to the point) and comes off with "and who do I have the pleasure of talking to?" Hubby got so upset! Here is was ready and confident and there she came off with all those words that just left him with his mouth hanging open. I hate phone people.
  2. ps - I don't think touch chat may be the right one. As I said before, there are people who can't speak, like they are autistic, or voice damaged, but everything else works, and this talks for them. The problem with stroke is not the voice, it is the brain. The same thing that causes them not to be able to make their words is going to also mess up their ability to work something or even write. It's all coming from the same area that is damaged, not the voice, but the brain where the words start from. We did get the lyngraphica, and my husband worked a lot on that. But no, it was not a talk for me ap, but a re-learn how to talk program. He got the Touch Talk,, then we found out there were a lot of the things free in aps! Here's some links to get your head in the right spot to understand this: https://www.youtube.com/results?search_query=aphasia https://www.youtube.com/results?search_query=lyngraphica https://aacdevice.aphasia.com/alltalk/ We did look at one thing that a girl came to demo it, called Nu Voice -and it had the problem I've already warned you about. The girl says, "so, let's say you want to say banana. So you type in banana, and she did, and the device said banana. Hubby looked really pleased, until I mentioned the fact that if he could SPELL banana, he could just write a note and be done with it. His brain is messing up the words, not his voice box.
  3. My husband had several different things to learn to speak (somewhat successful) on our ipod, but I think they might be available on the clone phones too. The thing is, it might not work like you think. My husband previously flew around the world giving power point presentations that he made on his computer, but all that 'know how' disappeared with his stroke. All work he did in the programs, I had to pretty much be right there with him, because he couldn't remember how to operate a computer. Some of these aps actually work better for those who just have a vocal problem, for any reason. BUT, I think it is very good to do repetitive language work. PHONE AP: One very small program was in the ap on the phone called SPEAK AID. It has just a few really important things on it, that when he clicks on them, they say that - like I'm cold, I'm hungry, etc. PHONE AP: I know there used to be a whole group of speech aps, but not sure what they were found under. Search aps using these words separately: aphasia, speech, lingrapica, small talk - we have not worked with these languages devices for awhile, but seems like there is something in there that I could do things like take a pic of Bob Evans, or any place, and load his fav meal choices. and he could see them and show me... we kinda looked at it together, so he wouldn't get stuck. FREE ONLINE SITE: One other thing he worked a lot with was on the laptop, but keep in mind you are going to need to sit there and make sure she knows what to do. After a couple of weeks, I could just get it started and he would know what to do in the one section I picked, but I would need to come back when it was time to pick another section: https://www.englishspeak.com/en/english-lessons
  4. oh yes, I see I clicked on the link to grit chair, a different one. My husband has an electric wheelchair, that comes in about 4 parts, each weighing about 39 pounds. When we took it to go to a reunion, it was soooooo hard, because everytime I'd heave up a piece and turn to place it, there'd be some friend standing there, trying to chat me up. Dudes! See my red fast and fast breathing, and sweat running down my face? Yes, that's why they say, I'd help you if I could, but I don't know how it all works. Well... hmmmm... how about waiting till we are inside and THEN coming to talk to us, and let me put this together without having to stop everytime I pick a piece up! And while distracting me, so I couldn't finish the chair, and distracting me from keeping an eye on Bob, another went over to his car door and the next thing I knew, my high fall risk husband was out of the car! It just seems like people always interfere when I try to take him out, they make it 3 times harder than it needs to be. :( I had an injury that made it really painful to walk and was going to use it myself, and found the battery needs replacing... bah... need to do that.... bah... It's a stinky place we are in now. I bought it for different things - to go places with him, to take walks with him.... but it seems I'm becoming less mobile now, so I can't take a walk either! well... enough ranting....
  5. worried about you
  6. The more things there are, the more chance someone can find something that works for them. :)
  7. Ron... do people have to pump this chair to get it to move? That wold be impossible.
  8. Hi Kevin, I'm Sandy and caregiver to hubby since his massive stroke Feb 29, 2012. I'm so glad you were able to prevent injury from that nasty screw! I know this is all bewildering, but it really helps to be with us and know there are other people who have been thru the same, and still at it. If I'd not found this board, and thought this had happened to just us, while everyone sung in the sunshine, I would have went crazy. But knowing there was a whole world of people, all experiencing the same thing, somehow made me feel like I could do it too.
  9. Dear Nancy, I know you are devastated with all this, and have pretty much lived at 'devastated' during the entire time, because of Dan's attitude. I know you will cry and be miserable, but not for this, for the 'would have been life' that we all missed out on. That won't change, and Dan being here miserable and making everyone else feel like they are caught between misery and despair won't erase those feelings either. It is a bad situation, and it's going to get worse. But, cry all you need to, while taking care of Nancy, and one day you will laugh... and feel guilty.... but it is not ever going to be helping Dan for you to remain in misery. Maybe he will find peace, and maybe you can find some too. You've been a good wife, a good caregiver, and a good mother, don't doubt yourself, don't blame yourself, love yourself for giving it all you had. You will have no reason to reproach yourself (eventhough I know you will) and wonder if you could have made a difference, because you did everything, Nancy. There was nothing that you didn't try to give to make a difference! It's just that he was not looking for a difference, and you were stuck trying to give something to someone who didn't want it. I love your bravery and willingness to fight against the odds. You have been a great inspiration. My prayers are always with you. Love you, Sandy
  10. could you give a link to the site you bought it from?
  11. EDIT TO ADD THIS FIRST PARAGRAPH: First, let me say that when my husband stroked Feb 2012, all 'me' activities ended. I spent the next few years, looking for that elusive moment to wash my face, often not finding it. I took a 5 minute shower once a week, whether I needed it or not. Then in Dec 2015, I noticed something..... he was doing better... I don't mean his handicaps had gone away, just that we had our routine and he wasn't in so much need and I actually had time to consider doing something of the 'me' kinda thing. That month (Dec 2015, my crafting exploded with countless crocheted doilies, I was entralled with them, and felt like me again! I was never a person who was 'out there doing things'. I've been a home body all my life, taking joy and yes EXCITEMENT in hand crafts that make me think and solve the puzzle of how in the world can I get this stitch over there from here (referring to tatting here). Tatting is mostly what I do now, because it takes so much concentration to do it, and try to understand it, that I become totally submerged in it for the time I'm doing it, and everything else fades away. When I'm tatting (or whatever I find to play with) I'm in my own world of colors and design and ... well... I guess people who are used to going out everyday (before this happened to them) can not begin to imagine why I enjoy this so much. But I do... I can't wait till he's in bed and I have a couple of hours to work on it. My 'work your fingers to the bone' part is getting plenty of exercise, but with my crafts, my creative side that craves something pretty and something fun, gets its chance to come out and play. Maybe you like to do something crafty, but haven't done it for awhile? Crafts are therapy, it just needs to be something you enjoy, and don't make a job of (like you know, people start asking for you to make this and that, and before you know it, it's like work) I'm also considering that next year, I'm calling a yard company, I only have so much energy and Feb will be 6 years. I need to conserve energy because I'm getting older and stiffer too!
  12. Nancy, you have spent years being TOO EMPATHETIC with Dan, and I feel (just my own feelings, ok?) that it was only an enabler to him thinking he could get away with anything, because he was 'brain damaged'. Dan is not like Bob. Bob is thankful to still be here, and have a chance to enjoy the sun and the days of being alive. Dan is angry and belligerent, and wants to take everyone down to be as miserable as he is. And he's already achieved that goal with you, nearly destroying you, while you struggled to show compassion, he'd poop all over the bed, waiting till it was time for you to leave, or throw and hit you with a full jug of urine. You've earned your stripes, and your new job is taking care of NANCY! You did the right thing, and I'm proud of you for finally seeing that Nancy matters. Love ya!
  13. Here is another thing we did. These simple sentences are used repeatedly in interacting with others, and there are quite a few categories. My repeatedly reading them outloud, you can improve your response time. Of course, replace details like where you live with your own info - don't want to practice someone elses details. I think this is a good practice, because when I studied Spanish, I would always practice out loud. People don't realize that we are not used to speaking another language, and it's difficult to get your mouth in order to get out the foreign sounds. I have friends that only studied silently, that could not speak upon an opportunity, and messed their sounds/words terribly, because they had no practice at it. Where I could spit the words out quickly, from having lots of practice at saying sentences... that didn't help my bad grammar though, ha, ha!
  14. Are you saying the only speech difficulty you have is that you can't get the words out because of face muscles not co-operating? Look thru these links: https://www.google.com/search?q=stroke+face+exercises&oq=stroke+face+exercises&aqs=chrome..69i57.4056j0j7&sourceid=chrome&ie=UTF-8
  15. Let me butt in here, too. My hubby, had a massive amount of speech therapy out, and I did a lot with him on my own. He still has aphasia, but is so much better - his stroke was very bad, so he has lots of leftovers. The one thing to realize is that the stuck part of speech happens in the speaking of it. When you read, read out loud, so your brain has a chance to practice saying the words and getting them out. I listen to Bob when he reads, because he may not know he is making mistakes if I don't catch them. I don't know if you have the same kind of problem, but he had about 3 or 4 things that hindered his reading. One was that, his brain was anxious to finish the sentences and would put in any word that seemed a logical next word in the sentence and he's miss the real word/s coming up! But the out loud repetition is the most important part of any speech therapy, as the words have to have practice being actually said. As far as the kinds of things he did at speech therapy, there was a lot of trying to build areas of the brain that held similar information. because the brain strores things by category. This is really important, and gives your brain more power by being able to organize types of things in its storage of information. For instance, sometimes he would write out a list of every kind of dog he could think of, or every kind of car, or farm animals, then read this list out loud. Lists that are more detailed, like parts of a car, lists of grooming items, Keep the lists, and read them out loud often. Sometimes, don't look at the list and make it again and see if you remember all or maybe different ones.
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