Macca Posted August 4, 2017 Share Posted August 4, 2017 Hi Maria, Also important to remember that at the moment what he is doing is 'normal' for him. You are measuring him by your own version of 'normal.' You can't tell him he is wrong if he doesn't recognise it or understand it himself. It is meaningless to him and you only justify your actions to yourself. Far better to put your efforts into rectifying the problem, because at the moment you are dealing with the wrong end of the of the spectrum - you are reacting to what comes out of the radio speaker rather than fixing the programme, if that makes sense. These aren't criticisms, just observations as an outsider looking in, and from a person who was in a similar boat, and I'm ok now. It isn't a guarantee of success, but it provides hope that in time, things will get better, albeit to a greater or lesser degree. Good luck, I really feel for you because the problems resonate with the ones I had myself in the early days. Please keep us posted. Best wishes, I wish you well. Macca Link to comment Share on other sites More sharing options...
Maria R. Posted August 7, 2017 Author Share Posted August 7, 2017 I get what you mean Macca, and I won't take anything you say as criticism because that's what I'm looking for, an inside idea of how to react to this situation to try to help my fiancé even in the small ways I can. So if you advise me not to correct him I'll try to refrain from it (even though when I do it I try to do it lightly as it's not a big deal and he will get it right the next time), and believe me it's very tough, adjusting my days to try to reach him on this seven hours time difference and listening to him remember every little detail of his ex wife and barely remember us or me. And yes I keep calling every day to this man who is my first and last thought but doesn't remember me. And thank you for your example and comments, much appreciated, Maria Link to comment Share on other sites More sharing options...
Macca Posted August 7, 2017 Share Posted August 7, 2017 You're welcome Maria. I'm not saying don't correct him, just don't make an issue of it, because as he improves one day it will go in and he will understand it, but until then you need to show patience and tolerance. That is because he can't help the way he is at the moment. I know it is difficult and frustrating for you but there is no other way to play it and it is the least painful way for you. The problem is not that he doesn't understand, it is that you do undestand, and that is what is hurting you. Good luck Maria, please let us know how he is getting on. I am willing him to get well, for all your sakes! Macca Link to comment Share on other sites More sharing options...
Maria R. Posted September 2, 2017 Author Share Posted September 2, 2017 Hi all, I hope you are all getting better each day. In my world there are no improvements after 6 months heading to the 7th, and in one week I'm taking my summer vacations and what's left of my savings to spend them near my fiance. He isn't aware that he isn't at home or not working, though he recognizes he is in a facility when we talk but he is still adjusting his days to his life before the accident, and even though he recognizes my voice when I call him I don't think he knows who I am except on brief scarce moments... So now I'm getting concerned, how should I act (considering what's best for him, I don't count much when it's related to him) when he doesn't know who I am when he sees me? I'll appreciate any insight because up to this point I have lost hope he will. Link to comment Share on other sites More sharing options...
Super Mario Posted September 2, 2017 Share Posted September 2, 2017 Maria, please don't lose hope. Until you see him you won't know if he recognises you or not. If he doesn't you could start by gently reminding him of things you have experienced and enjoyed together. Does his family talk about you to him? Link to comment Share on other sites More sharing options...
Maria R. Posted September 2, 2017 Author Share Posted September 2, 2017 Hi Mario, not sure about that. I know they know how he reacts when I can talk with him because I even got a message letting me know how happy he looked in one of our conversations, and I made and sent them an album of memories and messages of us, but they have been acting selfish too so don't count much on that. I have been working on a notebook of our 2 yeas together to take with me (with photos and comments on what we did and felt and even letters on how I knew he was my man or what I thought when we met and stuff like that) and believe me, I cried with each page, but lately I've been feeling it will be me the only one going through it.. You tell me not to lose hope but my days aren't getting easier or less painful, and he isn't improving at all, so it's very difficult not to lose some of it on the way. i don't want to sound despondent but this is how I feel. And I hope you are well, Link to comment Share on other sites More sharing options...
subzero Posted September 2, 2017 Share Posted September 2, 2017 Hello Maria...... six months since your fiancé`s bleed and we can feel the many tensions and anxieties you are feeling. This far on I can`t begin to fully understand how you are coping being so far removed from your fiancé. Trying to keep concentrating on your own employment must be so hard, and keeping your own life afloat each day must leave you exhausted, frustrated, tired and yes you have alluded to it.... feeling that because his progress is so slow.... will he ever recover to any degree. Perhaps you could explain the role his family are playing in his recovery. How many are involved, and what times are they able to spend with him. How positive are they about his treatment and recovery or lack of recovery to date. Many of our members have mentioned to you that even six months is still very early in his recovery. You clearly show from your own comments that you are not prepared to give up on your relationship built over two years. You deserve much respect for this. With so much of the man you loved affected by this devastating bleed, we can tell that you are trying so hard to resurrect the relationship you once had. The distance you are apart must be something you are constantly wishing was different. Did you ever contemplate asking your employer for extended leave of absence to enable you to spend continual quality time with your fiancé. No doubt you have, and this could well be just an impossible action to take given not only that you would be risking your employment, but you also will have your own commitments to cover each month. Maria, I do hope the time you are about to spend with him proves valuable for you both. He may not show it now, but we know that you are doing your best for him. As many have also mentioned earlier..... take care of yourself too. Eat well, sleep well and share your fears and anxieties with a close friend, and thanks for sharing them with us here on BTG. Subs Link to comment Share on other sites More sharing options...
Maria R. Posted September 3, 2017 Author Share Posted September 3, 2017 Thank you so much for taking the time and making the effort to put yourself in my shoes Subs, you can't imagine how much it means to me. Ill try to go by pieces: his family... I know they try to make time and at least one of them visit him once or twice a week and even have taken him out to lunch a few times. But I feel for what they tell me when they share some information that they are not expecting substantial recovery and it' has to be fine for them because they are already planning on selling his home! Which is another devastating thing in my plate when I imagine what he would feel if he ever knows about it. I considered asking for a temporary leave at my work but it's not only not having an income, its the expenses I would go through with the hotel and everything else, and after what I've spent this year with the visits I can't afford to do. Right now I'm not trying to get back the relationship we had because that can't happen, circumstances and both of us have changed, but I know he was happy having me in his life, (I miss him and our connections and time together terribly) and for that love i keep trying to bring him back to himself , because he is my man and that can't change. Will see how this spending next week around him results, Thanks again for being there (this taking care of myself goes well some days and others not that much, everything since I wake up feels strenuous). Maria Link to comment Share on other sites More sharing options...
paul99 Posted September 3, 2017 Share Posted September 3, 2017 hi Maria im sorry I haven't responded any sooner I really feel for you and your fella I don't understand how drs make such choices recovery takes years and if your fella can improve he will with the right support can I ask if you are engaged do you have a green card and the right to work in the US? if so is it possible for you to transfer your skills overseas? I've been in your shoes for over eight years plus and never gave up which is why I sympathise with you being in such a difficult situation but hopefully when you do go over to see him, he reacts positively towards you and I have my fingers crossed that he does.. good luck on the visit sweetheart Link to comment Share on other sites More sharing options...
Maria R. Posted September 3, 2017 Author Share Posted September 3, 2017 Hi Paul, no apologies needed and sure you can ask. On January we had started with the lawyers all the paper stuff for me to go there on a fiance visa this year (and if the world hadn't turned upside down we would have been married this June,.. We were even joking on doing it when we spent New Year days together but couldn't make it) so not a chance for me to be there for him. Thank you for your wishes (and for the sweetheart thing.. It's silly but I miss him calling me that, a lot). Maria Link to comment Share on other sites More sharing options...
paul99 Posted September 4, 2017 Share Posted September 4, 2017 hi sweetheart as your fella seems to be able to talk and the trip goes well, would you consider going over full time and marriage? never say never where a stroke is concerned the future is still there make a choice when you see him next as to if you are able to supply the necessary support. its a big undertaking but it depends on how you feel after the join up. darling I hope all goes well for you my fingers are crossed for you both hugs and cuddles xx Link to comment Share on other sites More sharing options...
paul99 Posted September 4, 2017 Share Posted September 4, 2017 Maria I have sent a pm for you Link to comment Share on other sites More sharing options...
Maria R. Posted September 21, 2017 Author Share Posted September 21, 2017 Hi all, So I'm back from spending my vacation week with my fiancé, which meant going to the care center he is staying in from first hour in the morning until his dinner time (that way I could leave 'to do something' and afterwards he wouldn't miss me and couldn't see me leave in tears). And he remembers me! The first day he couldn't remember my name but he has inside all what means us, so even though he doesn't remember what we did together or where he is, when we held each other and talked of our things he said the same as he would have seven months earlier, and joked and cried as we did when saying how fortunate we are to have each other. He started saying my name on his own and he didn't forget again. He is the same gentle funny resourceful man, he says hi how are you to everyone and takes time to talk and he is learning to move with his walker. His family are working to get his insurance company to pay for rehabilitation and cover what they should (the barstewards refuse to pay so he hasn't had rehab these last weeks which adds concern to the situation) He is fighting and I can only hope he becomes aware of his situation at some point to keep working on it all. I feel grateful for our time together (we could cuddle and talk, and I spent the hours with him sharing all the activities) even though I left terribly sad, but I don't dare to keep my hopes high fearing that they may be that, high. What do you think about the situation as it is now? Maria Link to comment Share on other sites More sharing options...
Super Mario Posted September 21, 2017 Share Posted September 21, 2017 Personally, I think, from what you have said, the future seems more positive. Hopefully the insurance company will fund rehab and he may well improve more although he may not be anything like he was before the SAH. I will say the time you spent with him did him good and did bring back some memories. Link to comment Share on other sites More sharing options...
Maria R. Posted September 21, 2017 Author Share Posted September 21, 2017 That's what I fear Mario, I understand he won't be like he was before, and I'm ready to keep calling him every day and any other kind of connection that I can get, but imagining how bad it can be hurts so much and that's what makes me feel silly for having hopes. Link to comment Share on other sites More sharing options...
Skippy Posted September 21, 2017 Share Posted September 21, 2017 Maria - never ever feel silly for having hopes - without hopes and dreams what do we have really? I had my SAH 11 years ago but 2 years ago I nearly lost my husband in a motorcycle accident. There were days after he came out of a coma, that he didn't recognise me but knew who our daughter was. There were days when he thought we were in a different decade and one day even went through from the 30s to the 90s in about an hour and a half!! He wasn't even born in the 30s!!! I hoped and dreamed that he'd come back to me and he did - like you I made sure that there was a constant connection and I gently corrected him when he remembered something incorrectly - it worked and now he's back home and all is well. Stay positive and he will pick up on it. Link to comment Share on other sites More sharing options...
Maria R. Posted September 21, 2017 Author Share Posted September 21, 2017 Thanks for the detailed answer Skippy, when I was reading how you were gently correcting your husband reminded me how I try to do with my fiance and it makes me feel less lonely. I'll keep your words close to me for those down moments that happen too often still, Maria Link to comment Share on other sites More sharing options...
paul99 Posted September 22, 2017 Share Posted September 22, 2017 Maria don't you ever give up or think of giving up. You have proved he is fighting his corner and enjoyed your visit so buck up and try to look at the positive side. I did that for lin and never gave up and had plenty of lovely moments and I would do it again if I had been given the chance. So look to a better future and some fun in the sun as time goes on sweetheart. Try and lift your hopes because nothing is final its just the start of the very long road to recovery hugs and cuddles xx Link to comment Share on other sites More sharing options...
Maria R. Posted September 22, 2017 Author Share Posted September 22, 2017 Thanks Paul and all for the messages and support. It's the only place where I pour my doubts and what it's going on because it's very difficult to explain to my family and friends what my fiancé Paul and I are going through. I don't want to sound despondent or whining either, you've all been or are going through the same or worse and I have to count as a blessing to be able to talk to my man who, some days, feels like talking and tell me how beautiful I am and smile at the new thing I have every day to explain to him, and other days like today is very busy solving business stuff so he will call me later before I go to bed as he used to do (wishing he could remember to do that.. . I leave my phone by my side all night in case one day he did). But the distance, this not being able to go and spend time with him as I need to do and not being able to get the news even the small ones as they happen is painful and very exhausting. So will keep working on the hope part and the taking care of myself too (I'll have a checking following my loved ones insistence.. Oh well), Take care, Maria x Link to comment Share on other sites More sharing options...
Macca Posted October 3, 2017 Share Posted October 3, 2017 Hey Maria, I've just gone all through the posts on this thread. I think you should go back over them too! Then take a step back and look again. What you are describing is progress, albeit slow progress - but it is progress, nevertheless! Hopefully he will start to advance a bit more and pick up some more pace, but it sounds as though he has advanced. That's brilliant! Brain injuries are notoriously slow to respond and his body has adopted a defensive stance to help him, and it, to recover. It has taken some of us years to get to where we are now and your frustration is natural, but he has to go at his own pace, not necessarily the one you want him to. He's coming back, one slow step at a time. Allow him to heal and don't beat yourself up about it either. I sense you feeling a kind of helplessness, but you shouldn't, you are playing a massive part in his recovery that you should not underestimate. Can you speak to him on Skype or FaceTime to try to bridge the actual distance between you? Keep your head up Maria, you are doing all you can. You can be proud of your efforts so far and your man must be really proud of you too! Stay strong. Macca Link to comment Share on other sites More sharing options...
Maria R. Posted October 4, 2017 Author Share Posted October 4, 2017 That's very considerate of you Macca, taking the time to check it all and write what you've learned about it. Yes I get what you mean, and believe me I came back from staying with my fiancé with hope which was something totally unexpected. I contacted with the director and everybody around him those days to try to get a different approach from them when I call him every day (it's different when you know a bit the person you are talking to) and I'm following them because yes they told me they would try to make possible chats on Skype, but I'm still waiting for the first connection. I know it was so different when he saw me! I can only hope that can help him a little more. You are correct, I feel I'm not doing enough and try to search other ways to help him. Are there any guides I can read or study so my calls are more useful for him? I wish I could be with him because when I was around I felt he worked harder on walking and being present and that upsets me. But I'm here for him and the pace his healing may take, even though it's hard and I still cry and miss him every day. Hope you are well, you all help me stay strong (or at least stronger than I thought I could be) Link to comment Share on other sites More sharing options...
Macca Posted October 5, 2017 Share Posted October 5, 2017 I don't know of any guides as such but others on here have a wealth of experience and hopefully one will answer soon. Good luck Maria, please try and stay positive to give yourself the best chance of ultimate success. It is a long road indeed, but one day, one step at a time, you'll be nearer the end than the beginning and then it will be all the easier to see it through and you will think it will all have been worth it in the end. Link to comment Share on other sites More sharing options...
Maria R. Posted October 5, 2017 Author Share Posted October 5, 2017 Thanks Macca, working on that on the bad days (today's chat wasn't one of the best which left me down, trying to climb up) and on the good ones when they come. What I've been doing since it happened is write for him, talk to him in a notebook, and it helps me to remind myself the little things that have improved . Maybe one day I'll be able to share it with Paul.. Maria Link to comment Share on other sites More sharing options...
Macca Posted October 7, 2017 Share Posted October 7, 2017 That's a good idea Maria, I'm sure you will. It's a good way of capturing the small improvements that would go unnoticed or un-remembered if you didn't keep it. The good thing about bad days is that the next will be better - remember that! Link to comment Share on other sites More sharing options...
Maria R. Posted October 8, 2017 Author Share Posted October 8, 2017 Holding on to that Macca! Looking forward to the day I can share a good moment with you all, my support in these long months Maria x Link to comment Share on other sites More sharing options...
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