SandyCaregiver

Stroke Caregiver - female
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Everything posted by SandyCaregiver

  1. 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.
  2. 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. 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. 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. 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. 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. Yes, and when I say 'grit' I mean grit your teeth and keep at it!
  8. 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. SandyCaregiver

    dancing nancy bear

    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.
  10. 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.
  11. 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!
  12. Sue, do you have any idea why my words are highlighted with white behind them?
  13. 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!
  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. The more things there are, the more chance someone can find something that works for them. :)
  16. Ron... do people have to pump this chair to get it to move? That wold be impossible.
  17. 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
  18. could you give a link to the site you bought it from?
  19. 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!
  20. 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!
  21. WOOT! You are finding Tracy, and she is a great gal!
  22. Wow, Tracy, I didn't know this was going on. I'm sorry you have had to go thru this. I am so glad to hear how you are coming back to life, and each day, living it YOUR way, taking a little more back. You have shown so much strength and bravery, in the face of all this, you will surely keep going and growing, more everyday. Prayers and virtual hugs, coming your way!
  23. Nancy, Dan has been spoilt into believing you will do anything to appease him, and look where it got YOU. It didn't help him any either. I don't know what his answer is, but I do know that the sooner he realizes he is not the king and everyone else the peons, that life will move more smoothly. I'm glad you sutck up for yourself, that means your head is in the right place, and no more mind control games on you! Good job!
  24. SandyCaregiver

    So sad

    so sorry to hear of your friends passing. It is so painful, I'm glad you have so many wonderful memories of him.