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Stroke Caregiver - female
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About SandyCaregiver

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    Chief Mentor

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  • Stroke Anniversary (first stroke)
  • Interests
    crochet, knittng, quilting, Latino Soaps. Dabbled in most crafts, but now have no time for them, hopefully some day.
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  1. Yes, and when I say 'grit' I mean grit your teeth and keep at it!
  2. We had extremely good insurance at the time, and my husband actually got 52 DAYS of therapy a year (not sessions, but days, with as many sessions in each that you could stuff in). We usually skipped winter/flu season, but in good weather we went 5 days a week and then the first 2 years there were loads of doctor appts. My little 2 year purse calendar definitely got a work out then, hardly and empty block on it. With Bob's month, we are not getting as many of the DIFFERENT things done that I want to, but I have felt so ratty myself, so that's the reason. But I'm thankful for the things we are doing consistently, and he's even thought of some things to put on the list, and reminds me when he does something to put it on. I'll have to put another pic to show how it worked for us when the month is done!
  3. Life is fragile. Not only in the stroke world, but while we have stroke in our lives, others are having car wrecks, cancer, acts of violence - all our lives are changing everyday, and we wonder what we would have been if those things hadn't happened. Every major event - good or bad, changes our path and who we were, until that thing happened. Nothing is written in stone, we live, so we change and if we are lucky, we keep learning to adapt. When my hubby stroked, they gave him the TIA meds, and he looked so good! Then they flew him to a nearby hospital with a special stroke team, who were waiting for him. I felt so blessed to live in an area with a special stroke team as I waited for the procedure to be over. The next time I saw him, he looked like he was one step up from dead. They NEVER told me that the procedure they did to break up blood clots had actually ended up causing a huge bleeder - taking everything away, the he had been saved from by the TIA meds. I've often thought back, and wondered what we would be doing right now, who we would be right now... if only I hadn't trusted them, and let them do that procedure. But then I think about the story of the senior couple whose kids were nearly grown, and they bought a new wonderful house, and a motorcycle and were living their life big - right up until they were both killed in the same motorcycle accident. The truth is.. we don't know who we would be, or even IF we would be. We might be wonderful and happy and better than ever, or we might be dead, or mamed from an accident, or who knows? We assume we missed all the beautiful part of our life, but maybe we missed something else worse, and we just don't think of the possibility of having lost something 'worse'. Yea, I agree, it stinks to have anything take away our way of doing and being. We are living what we have, as we consider it 'gravy', -all extra, as he could just have easily been gone, and we live our lives knowing that oddly.... unbelievably.... there really are people that would trade places with my very handicapped husband, if only they could.
  4. Durn, Nancy, that place should be paying YOU, since you seem to be working there. ? It would appear you are too stubborn (at trying to be everything to everyone) to just say no, so at the time I'm reading this, I'm praying the hip is about ready to take over the extra work you're doing because of that fall. Love you, kiddo.
  5. That's beautiful, Asha. I'm so glad you both have the kind of relationship that grows together, instead of thwarting each other. It matters more in quality of life and happiness, than the circumstances of what happened.
  6. Therapy Planner Page

    I've recently gotten into bullet journaling - which has went into an art form, and I'm loving it. I started trying to bullet journal around the middle of Feb, and use a 2 pg daily spread, with everything on it. One of the many things I want to try to get back into is my stroke hubby's therapy, that we are not doing anything, on a regular basis, on (stroked 2012). I got this free print off from a bullet journal group, where the designer wanted to see what people would do with it. There were many things I could use if for, and I pondered it carefully. Then I thought if I used it for his therapies, he might get more excited about starting again. I will probably have to reprint it as I get better ideas on how to do it, but this is a learning experience. I like how it will be a visual for him, to see what he's actually doing. I just got it made and he just started a reading period, so the first day (Mar 11) shows he has started. After he read he told me (in aphasia talk!), "you have to make another picture, I'm playing solitaire now!" Game playing is important to his decision making skills and cognition, and I was very pleased that he initiated something on his own! So, I put another item on his list and marked it on the calendar - I think this is going to go over really WELL with him!
  7. Sue, do you have any idea why my words are highlighted with white behind them?
  8. Bob's Surprise Package

    Haven't shared anything in a long time, but Bob got a nice surprise in the mail today, and I wanted to share it with everyone! Our niece works at the sports arena, and has sent her Uncle Bob a care package of his favorite basket ball team! There are a long poster of the players, 2 Blue Nation candy bars, and another hat to add to his beloved collection of UK hats! Look at his face! HE TOTALLY FLIPPED OUT!
  9. I don't know what country you are living in, but it's worth mentioning that if it is in the USA, that many jobs have a medical leave you can take for caring for family members. I can't think of the exact name of the leave... maybe someone else will think of it.
  10. Hello and welcome. You asked about how to keep your father from falling into depression. We were very fortunate to have a doctor that immediately pointed out that stroke survivors really NEED to have a light anti-depressant. I don't mean one that knocks them out or makes them in la-la land, but one that normalizes their mood, so they can be free to participate in their own recovery, without getting bogged down with all that's happened to them. My hubby took 20mg of Citalopram once a day, and did not fall into despair. After 2 years, he no longer needed it, as he was adjusted to his way of life now. Once, early on, I tried to take him off of it to see if he needed it, and I couldn't believe the difference. He was the living picture of despair and suffering. Well, he went right back on them and had no trouble coming off after 2 years. I have seen many stroke survivors who refused to take 'drugs' and the usual outcome was that in a few months they were actually suicidal. Please ask the doctor in charge about something for him, if he is not already receiving it. Another wonderful thing that happened with us, was when he was in rehab, the therapists would come in each day and greet him with a big smile and it made such a difference! He would smile back and you could tell that made him feel happy and hopeful. As I saw the transformation in him between some treating him sadly and others treating him with a happy countenance, I knew the secret. I knew we could be happy too, but it was going to be a matter of looking for the good thing each day and choosing to be happy. If you let yourself break down in front of him, he will see himself in your eyes, and feel like he is not going to make it. People may say that it is a bad thing to be strong for each other, but it is the opposite. Without courage and being strong for each other, we are all lost and crying in despair. Our strengths put together are what make us succeed. This is one of the programs that my husband practiced - he had no computer skills after his stroke and I did need to sit right with him. Your father may be able to do this on his own - there are many categories, so someone needs to make sure he realizes that, as he might have visual cut and not see the whole page. One thing, it is living with someone that you begin to realize what they are really missing. So doing things with them, at least in the beginning, to see if they are perceiving how it is done correctlly, is how you find out what else they may be missing since their stroke. https://www.englishspeak.com/en/english-phrases You are a very good daughter to pitch in and help.
  11. 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.
  12. 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.
  13. 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
  14. 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....
  15. worried about you