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  1. Today
  2. HostTracy

    Absolutely agree Becky 🙂! Jim we hear you. Happiness is a journey that starts with yourself. Neuropsychogical testing would be very informative and helpful to your wife and for you. The unknown is how much of her behavior is she in control of; what treatments, therapies, medications, etc. could help; can there be improvement and are either of you experiencing depression and need medication/therapy. I also very much agree that you need to seek mental health support or rather more support in general. Anyone in your shoes would more than likely need the same thing...your wife as well.
  3. becky1

    Everyone on this board who has had a stroke has a "stroke story". It's a day we'll not forget, no matter how hard we try. It pales in comparison to only one thing; the recovery attempts that followed. Recovery is a long, hard process, but doable. I had what the docs called "massive" hemorrhagic stroke in the brainstem. The docs gave me only a 2% chance of survival. I survived but had a number of deficits. I couldn't speak.My Speech Therapist had to teach me how to talk again. I can speak, but have dysarthria, meaning that I slur my words so that they're not always clear and understandable. My ST also had to teach me how to eat again as I had a swallowing problem. I still have a swallowing problem sometimes, but it's improved a lot. And, last, but not least, like your wife, I was paralyzed on my left side, and had no use of my left arm or leg. I now have limited use of both. My point is that therapy can make a difference. As you can see, it's not a "cure-all", but can help you enhance what you have. When I saw that my body could do things, I WASN'T AS DEPRESSED AND WAS MORE OPTIMISTIC ABOUT THE FUTURE. Maybe it will help your wife in the same way. I still think that both you and your wife would benefit from being on an antidepressant, and seeing a mental therapist. Your wife definitely needs to see a neuropsychiatrist so that. at the very least someone can help you understand how much of her behavior she is in control of. And what, if anything, can be done about it. Good luck, Becky
  4. Yesterday
  5. http://www.strokechat.net/
  6. As you guys know I am sucker for Oprah's super soul Sunday series, & learn valuable life lessons from it. As I have mentioned before I feel loved by feeling of appreciation expressed by my family members. on yesterday's show guest said something very important, whatever we always wish for is usually never enough, so if you wish for more money, however amount of money you get its never enough, same way with all other items, if you always feel loved by words of appreciation its never going to be enough for you to feel loved. which I totally get it, I am writing it down so that I don't forget this valuable lesson. I should know by now through all action of my family & extended family & friends, I am enough & don't need anything more to be loved . Asha
  7. HostTracy

    Hi Jim my name is Tracy. I am very sorry you and your wife find yourselves here. I can hear how much you love your wife and I can hear how frustrated you are and can sense your pain. I, in every way, admire every caretaker. Caretaker to me is one of the toughest positions to be in. It does sound as though your wife may be experiencing some depression and definitely at the very least lack of motivation. These things can be caused by stroke itself. Stroke can be the cause of so many emotional, behavioral and physical things (including being fearful of losing her husband) for the survivor. For you, I can see how difficult and sometimes maybe even hopeless you feel. I suggest that you speak with your wife's medical team to ensure your wife is getting all the help she needs and that her needs are met at this point. I also feel like you, the caretaker, need to spend time and effort on yourself. Plan this time, make it a priority, make you a priority, rest, be good to yourself, seek therapy if you need...caretaker burnout is so real. You need to recharge. It will help you to have a clear mind, have energy, to have patience, to seek new or different help for you and your wife, to have more stamina for your very tough position. Taking care of you will help you to be able to be a caretaker for your wife. You deserve this self care. I wish I could just give you "the" answer. I feel that with more support for your wife's issues through her medical team (Neurologist, PCP, Therapists, or any other member) finding things that may help would/could be so good for both of you. Hang in there, take care of you, get help for you (I can't think of anyone who deserves this more than a caretaker and who he/she takes care of). ☮️❤️
  8. heathber

    It does sound like she has given up or is depressed, or a combination of the 2. I suspect waking you up is partly jealousy related. she can't sleep and resents that you can. Stroke can do all sorts of funny things to your brain and your impulse control, and even without stroke brain time goes awfully slowly in the night if you're awake when others are sleeping. Days of inactivity won't be helping that either. She needs to find her "purpose" I'm not sure this is something you can help her with. But she probably needs to talk to someone.
  9. Last week
  10. HostTracy

    I ♥️ you Heather 🙂
  11. Deigh

    Jim, I've followed your mail for a while as a lurker since although very concerned with your situation there was nothing I could add to the excellent advice you were being given by other members. There is one thing I'd like to add though and that is about the crying. It is not showing distress but is the result of crossed wires in the brain and it should reduce. Six years ago I was in the throes of it and it was the most embarrassing part of my life. I would burst into explosive tears at the thought of something pleasant or even uncomfortable, I greeted visitors (even those I didn't like!) with hysteria. As a 84 year old male, this was completely unacceptable. It took two years before I could say that I had it under control, but even now I have to take care with bottling my feelings. Good luck, Deigh
  12. Losthubby

    I really first want to thank you all so very very much. It means a lot to me to read these. i will need to look up what PBA is, never heard it mentioned before. The roller coaster I hate to say is sucking the life out of me. She doesn’t understand that, I need sleep to function and work the next day. She will wake me up, just for the sake of it. Once recently she woke me up, saying I had overslept and was going to be late for work. 2 things...it was completely pitch black, couldn’t see anything. I looked at phone and it was 3:30am. This wasn’t the first time, just most recent. I get mad..she gets upset and crying because she can’t get why I need to sleep and she’ll think I don’t want her around anymore. Paul, I have tried to give her things to do...but they never get done. One thing I tried to give her was something that she did before the stroke and that was doing the bills. Just writing checks, or anything like that. I had a little table that she could use and had the bills sitting there for days...nothing ever got done. i talk to my dad a lot about this, there isn’t a whole lot he can’t do...amazing man that I wish I could be 1/3 of him. Teacher, elementary school principal, farmer, a couple of board members. At age of 63, he backpack the John Murl trail, 3 weeks, and I think 210 miles, but don’t remember. Done over 900 miles of trails in the smoky mountains. And he is now in Idaho backpacking. He’s 68 now...and I can’t keep up with him. But after all he has said and done....he has been at a loss for words on what to tell me. His only response is “I don’t know what to tell you” when he doesn’t know what to say... I really don’t know what to think.
  13. PaulNash

    You can celebrate and be sad at the same time. Linda and I just had out 30th anniversary, which was quite emotional. While neither of us wanted my stroke, or would have wanted any of the effects, we are still both glad that I survived, impairments and all. Compared to most of us, I got off lightly, but the stroke (3 1/2 years ago) still had a major impact on our lives and our relationship. There is a lot that we both miss, but we are slowly re-building a new life together on the foundations of the old one. It is not easy, but it is worth it. We still celebrate the fact that I survived, and that my impairments are as "mild" as they are, while mourning what we have lost at the same time.
  14. PaulNash

    You have my sympathy. I cannot imagine what you must be going through. My wife (who is also my primary caregiver) had quite a battle just coming to grips with the fact that I will never be the same, and that she now has to take responsibility for a lot of stuff that used to me mine. She is also now the primary breadwinner, which is a turnabout that she is not happy with. My impairments are nowhere near as bad as many on this board. What has worked for us is that she has forced me to re-take responsibility for many aspects of my life, plus to take responsibility for some aspects of our joint life. It has not been easy for her, and not been easy for me, but she has pushed me to make decisions, first small, then bigger, then really important. Her trick, I suppose, was to put me in a position where I *HAD* to take responsibility for something, even if it was small and unimportant. It took some time before I was comfortable doing that, but then she could start pushing me to be responsible for bigger decisions. Maybe try to find household chores that your wife can do (even if just choosing what to eat for dinner) and build from there. The difficult part is figuring out how to make her take that responsibility, hence starting small. And in the meantime, take time to look after yourself. I'm a big believer in exercise for mood issues. Walk, run, cycle, whatever. She'll survive without you for as long as it takes, and the break will probably be a good thing for both of you. And this is *really* important. As you have found, you can't help her if you are in a bad way. And if there is any way to convince her that volunteering will *help* keep you, that would make it easier for her to get out and about. Good luck, keep us posted, and come and unload here. We're here to support you and do anything that we can to help.
  15. PaulNash

    I like the statement; the image really *is* thought-provoking.
  16. PaulNash

    M wife, my family doc and my neurologist all want me to stay on aspirin. My stroke was caused by blood clots from an arterial dissection (which has now closed off), but apparently there is still a risk of clotting elsewhere. I guess that it is cheap insurance, if irritating. Far better than Fragmin (injectable anticoagulant). I was on it for about 6 months (IIRC, which is dubious, given the state of my brain). I self-injected in my stomach, then thighs and buttocks. Looked like a serious junkie with all the injection sites showing as massive bruises because of blood not clotting. Fortunately the cops never stopped me for anything, else I would have been in serious trouble :-).
  17. PaulNash

    The All Blacks might be on top right now (OK, most of the time), BUT South Africa won the game that mattered, immediately after independence/democracy in 1995, when James Small marked Jonah Lomu and kept him away from the action. We won 15-12, Joel Stransky out-kicking Andrew Mehrtens. The only points scored were drop goals but the two fly-halves. This was fictionalised in Clint Eastwood's movie "Invictus" (not bad, but nowhere near as exciting the actual match live). I have no doubt, however, that New Zealand is a *far* better place to live than South Africa.
  18. heathber

    It sounds a bit like she has some emotional lability or Psuedo Bulbar Affect (PBA) Look it up on here, lots of stroke people have it. It can be reduced with medication but you'll need a psychologist to prescribe it (well in Australia you do). I understand from what you wrote above why you would be wary to try that route again, but I think it may help you both, maybe ask for a shared session so you don't get any surprises.
  19. swilkinson

    The crying would be hard to bear. Ray's was more a silent resistance. Why did he have to go, why couldn't I go on my own and leave him alone ( I couldn't as he had falling issues). When your life changes so radically you have so much inner conflict. And yes it does affect your mental health. I suggest you get some practical advice from older friends dealing with similar problems on how to get a break yourself. Try a babysitter, a paid carer, some help from her family for your family. All caregivers need a break or they break down. And that breakdown destroys a family. It is not a case of being selfish but being practical. So please look around your area for help. Ray was at Daycare one day a week at 57 with men who were in their 80s and 90s, he didn't want to be there at first but I told him it was a mental health break for me which it was. I joined chat on here because the participants have a lot of wisdom both stroke survivors and caregivers on how to handle a situation where you know things are unlikely to improve, and that is what we have to face up to as a caregiver. Things have changed and they are not going to go change back. And that is a really harsh reality. I know all of this is so hard, I had a lot of similar feelings after Ray's major strokes in 1999. I was 43 when he had his first stroke in 1990, 52 when he had the two major strokes in 1999. My life changed as much as his did. Neither of us wanted that or deserved it, it just happened. I found myself bitter and resentful sometimes but somehow managed to overcome that. I hope you can too.
  20. PennGwyn, Sounds like you have a Doctor who is interested in making you the best you can be. Congrats on finding something that works. I find your motto interesting and I can identify with it as well. As I get farther along in my stroke and heart operation recovery, I'm going to have to pay more attention to my diabetes. So it is really helpful to hear of treatments that have shown such promise. James
  21. Losthubby

    I use to do that, and I agree 100% with you on that. We are still semi-young. But when we would go and do things she would always cry. Going out to dinner, flying down to Florida and she was crying before we got out of the terminal. That is why I was hoping the psychologist would help her. I saw it as, as hard as it is, she hadn’t accepted the new her. Everything we did she cried, because she couldn’t do what she use to be able to do. It’s hard to get any satisfaction out of watching your wife cry all the time. That along with everything else took its toll on me. I got to the point I was overwhelmed and checked myself into “the nut house”. All I wanted to do was run away into the mountains and never be seen again. It was about a year ago I checked myself in. I feel the pressure building up again in me, and I’m doing what I can to not get to that point again. its just hard when you get no satisfaction from anything you do...I feel like I have no future to look forward to. All my friends have disappeared, none of the women that she use to work with, none of them come to see her and do anything with her which really bothers me and my sister. So I’ve come to the point of, how do I be happy? Still have 1 kid in high school another just starting college.
  22. swilkinson

    When we make someone else happy we find happiness ourselves. I looked after my husband Ray for thirteen years giving up a good job to be his full time carer. From time to time I asked the same question you have posed. In the end I decided the only way was to make looking after Ray the reason for getting up each day. It was then I found out that if he had a good day I had a good day. He died six years ago but I stayed on the site as a volunteer. I became a chat hostess on here but gave that up about three years ago but stayed on as Blog Moderator. That's my story. So, what about your story? Would it make a difference if tomorrow when you get out of bed and put your feet on the floor you say: "Today my job in life is to make my wife happy."? Try it and see how you go. I call this approach intentionality. You intentionally work towards a goal. In this case not your own happiness but the happiness of the one who you care for. I don't know your situation but I do know this worked for me. My mantra was: "Today I choose to look after Ray." That meant I stopped feeling helpless and started feeling that this was what I had chosen to do and that did make me happier. Hope it works for you.
  23. GreenQueen

    This is beautiful. Smiling with the sun on my face. Love it.
  24. GreenQueen

    Will green is my absolute favourite colour! That’s a view I could handle! We live next to the Bush and most of it is dead in summer but during winter...glorious! Deigh, I have seriously been thinking about kiwiland for retirement. I’m over worrying about deadly snakes during summer! Becky...Appalachian mountains...I’m gonna visit you! Sounds amazing!
  25. Losthubby

    Sorry for the delay in getting back. She is limited to what she can do. Only has use of 1 arm, and full use of 1 leg. I couldn’t live with myself at the thought of leaving her. I’ve fought depression my whole life, no self confidence in myself at all. That was the thing about our relationship was, she was my rock and helped me through my ups and downs. She is unable to do that now. I found her a psychologist to see and she was a stroke survivor!!! I was so excited that I thought she could help her. As it turned out...she didn’t help her but more like empowered her. Instead of encouraging her to volunteer or get out and find things to do... she was convincing my wife that if she wasn’t happy with me and I wasn’t giving her what she wanted to leave me and the kids. I was FLOORED when that happened. My dad and I talked about it and believe she got worse seeing her. She is not seeing her anymore. I had a bad day or 2 and after getting stuff done was 8pm and I was tired and just in a rotten mood, and I don’t want to last out or snap at anyone so, I made peanut butter and jelly sandwich and went downstairs to just veg out before bed. Of course this made my wife feel terrible because she can’t do anything to help me. I was in a no win situation which doesn’t help with my depression or confidence. Just spinning my wheels in mud right now.
  26. Come join chat in the coffee shop tonight. 🙂 Meet you there in one minute!!! http://www.strokechat.net/
  27. PennGwyn

    I was diagnosed Type II Diabetic about 15 years before my first stroke. A vew years ago, my endocrinologist replacd my hefty daily dose of long-lasting insulin with a much smaller dose of Treciba(sp?), which gave me good results initially but eventually seemed to be less effective. In Janary, he started me on Trulicity and has been blown away by the results. One injection a week brings my blood sugars down to normal levels, or often below but without the symptoms such low blood sugars would normally cause. I've had four mild strokes in ten years; none in the seven months on Trulicity. It ight be pemature to leap to any conclusion...
  28. Has anyone else heard of this? It sounds like possibly related to stem cells; my mdical knowledge isn't sufficient to b sure... "Core blood" is recovered from placentas and umbilical cords... Somehow it is supposed to repair or,replace damaged tissues on a cellular level. I saw this advertised on Facebook and asked for more information. I learned that this treatment is offered in Germany, and billed at 40K euros, about $45K. So not something to be tried "on a whim"... Penngwyn
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