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Stroke Caregiver - female
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About SandyCaregiver

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    Senior Mentor

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  • Stroke Anniversary (first stroke)
  • Interests
    crochet, knittng, quilting, Latino Soaps. Dabbled in most crafts, including tatting, and finally got back to them in 2015.
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  1. SandyCaregiver

    Hi there, my hubby had a massive stroke Feb 29, 2012. I am 24/7 sole caregiver, and do most things for him. I think it's important to realize that even though my husband has a lot of outward problems, he also has inward ones, that involve his thought process, or lack there of. You can see the outward problems, but you have to spend time with him to know the inward ones. For this reason, people we might see on a trip out, don't really get how many problems he has. Moving on to your husband, it was a slight stroke, and I'm guessing not a lot of outward signs? Keep in mind that outward and inward are 2 different things. Things that take mental decisions may not show to others, but if you live with them, you find out pretty quick that things are not the same and they have all these stumbling blocks in decision making and seemingly obvious things like the sequences of doing anything! I was very happy when I found this board, because if I thought I was the only one dealing with this, I'd been so mad and bitter and doing the 'why us, why my healthy athletic hubby?!' thing. But here I learned that even children can have strokes, and unborn babies. I learned how many of us caregivers and survivors are out there, and I was just one of the many, working on the same thing, along with all the others. We are coming up on 8 years survivorship! Got how to questions, don't be shy, there's an answer!
  2. SandyCaregiver

    I'm sorry to hear that Dan is up to his old tricks again, and you are falling into HIS pattern of his way or ELSE. I remember the affect it had on you before, when the more you gave in to his 'or else' demands, the worse he got with them. Please be careful Nancy. Don't be controlled by him again, he doesn't see your needs.
  3. 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.
  4. 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!
  5. 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.....
  6. 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?
  7. 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.
  8. SandyCaregiver

    Yes, and when I say 'grit' I mean grit your teeth and keep at it!
  9. 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!
  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. SandyCaregiver

    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....
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