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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. SandyCaregiver

    when you're listening to tv, and they say something with emphases, try to copy them and say it out loud. Pause the tv and practice it. I'm looking for a program that used to be online where you could practice phrases and hear listen back to yourself. Let you know if I find it again.
  2. SandyCaregiver

    I'm sorry for your loss... and I am thankful to hear that everything seemed to work together to make it as peaceful a closure as anyone could hope for. I know you will have ups and downs in the changing of your 'role' in this life, and my prayers go with you, I hope to be able to do as well by my own husband, as you did with William.
  3. SandyCaregiver

    Wow, you have came thru so much, Sue. You are an amazing woman and I have been blessed to have gotten to read your blog over the years. It is true that we are all, perhaps living on angel time, we just don't know it yet. Peace in the time of knowing it, is all any of us can pray for, and you are shining like a star right now!
  4. SandyCaregiver

    I think we all get caught up in whatever is the prevalent thing in our life, and it can overtake everything else. It's not that different than what your stepmom is doing, but hers is more visible - she is stuck in a place in her mind where she can't stop thinking about the same thing, just like you are stuck. Ok, now to tell on my self. I'm not one of those people that expect or even want help from others, my manifestation of this same 'mind set' is that I have a lot to do and also my own health problems, so I want to do what I need to do fast, and resent getting somewhere (like the pharmacy) and finding they have the pick up wrong AGAIN. So I am stuck waiting for them to fix it, maybe 30 minutes, standing on swollen painful feet. But that is just one example. My big brain thing is, if I have a list of things to do, I want to do them, cross them off the list, and be done with it, making way for the next thing. Unfortunately, it seems that anytime anyone else is involved, they drop the ball and the things don't get checked off the list, but need to be a 're-do'. Every re-do takes away from getting anything done (appointments from workers, who didn't actually get it fixed, someone who wants to help, and you try to give them something simple to do, and they tear something else up that is now going to cost money and another appt to fix the thing they 'helped' you with). SO, the outcome of all this is that I have become a "cut to the chase" kind of person, expecting precision from others, who apparently have never done one thing right in their lives, as far as I can tell. My mission has been trying to be NICER to others. This is more of a slippery slope than it sounds, because one of the reason I became so on point is because a more polite approach led to people just disregarding what I was saying and going right over top of me, like I was a child and they didn't need to listen to what I wanted. I'm sure they would not have treated a man like that. So a little like walking a tight rope, being nice and still assertive. hmmmm.....
  5. SandyCaregiver

    well.... I guess the biggest things that jump into my mind are all the times when he would do the hunger strikes, and remember when he refused to get out of the van for 3 days and ruined it. I remember him being very cruel to you... often. At least when he's there, you CAN get away from him and just think of your own welfare. I have no idea about ther money, is anything in his name still and if not, how long has it been out of his name? Seems like medicaid could help pay?
  6. SandyCaregiver

    I am sorry for what you are both going thru. I would like to add that Bob recently had an incident that affected his speech and vision, and during this time period, began to see things and people that were not there. It was a type of seizure... the same kind where people hear the same song non-stop or smell a certain smell - all coming from the brain. In his case it was visual.
  7. SandyCaregiver

    Yes, and when I say 'grit' I mean grit your teeth and keep at it!
  8. SandyCaregiver

    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!
  9. 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.
  10. SandyCaregiver

    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.
  11. 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.
  12. SandyCaregiver

    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!
  13. SandyCaregiver

    Sue, do you have any idea why my words are highlighted with white behind them?
  14. SandyCaregiver

    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!
  15. 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.