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I know the title is selfish and I am sorry. It's been over 3 years for my wife since her stroke. I've done everything I can do to help and support her and it's taken a toll on me. I've put my life on hold for the sake of my wife and kids. 1 kid just finished high school, the other has 3 years left. I quit running, gained a bunch of weight.

  I've finally started back running trying to loose the weight, but sometimes it feels like no matter what I do it's never enough. I'm miserable and unhappy. My wife is not getting better and in some things getting worse. I feel like I'm at a crossroads. She can't drive or do a lot of things but there are little things she can do. I've tried to get her to volunteer somewhere for..1 or 2 hours a day...or do something besides watching tv all day, but she won't. She blames me for destroying her self esteem and confidence and won't volunteer because she is afraid of losing me.

We were always active before doing things but now she can't do anything and I think a matter of time before she is wheelchair bound. She is putting on a lot of weight and just trying to walk down the hall she leans against the wall.

I'm miserable. I'm happy she survived but as everyone know, stroke changes people and the dynamic of a marriage.

I feel selfish for asking this but I don't know how to be happy anymore. Ignoring myself and not taking care of myself the last the last couple years is taking a toll on me and I'm finding myself just sick of it all and...I want to be selfish and happy... can someone help me with what I'm going through and explain how to be happy?

Thank you 

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losthubby :

 

is your wife able to login here, she can start blogging here on site or come to our live support group where we meet every afternoon M-F from 3-4 EST& on evening 8-9EST on M,W & F. all daus we meet in survivor room #2 on Friday though we meet in coffeshop where every one is welcome to join. Stroke affects whole family, & sometimes hearing advice from your family or doctors does not help as much hearing from other survivors , since you know they have been through the fire & came out alive to share their story, & you find value in it. I know that was case for me. if doctor tells me life will be better , it was hard to trust him on that, but when it came from other survivors easy to believe, & learn trick or two from them in finding their new normal which is satisfactory to all parties involved. hope to see you both around often

 

Asha

 

 

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Hi Losthubby, I'm so sorry that you are feeling this way but given what you've told us also not very surprised.  You can't change her, she has to do that. But you can change you. Start by deciding to be happy. Take some me time and look after your needs. Make sure you have at least 30 minutes a day where you do things for you, simple things like going for a walk around the block can make a huge difference.  Consider starting a GLAD diary. https://www.healthyplace.com/blogs/buildingselfesteem/2014/10/do-negative-thoughts-consume-your-mind-try-this-technique

Take control of both of your diets, cut down the carbs and empty calories. It's amazing how much eating well can make you feel better.

 

Hopefully as you start to take more care of you some of the attitude will rub off on her too.  Talk to her about getting into a rehab/physical therapy program and doing some regular therapy. I suspect that she is just as unhappy as you if she used to be active. Physical Therapy will probably not get her back to what she had pre stroke, but it can still give improvement on now, but she will need to be willing to work on it.  Also some of her inaction is probably related to stroke fatigue which is a real thing. 

 

Fingers crossed you can both make a new start on beating this thing and forging a different path for yourselves.

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WOW! You really are at a crossroad!  My concern is for you, as you stand to lose the most. If you stay, and nothing changes, your unhappiness may turn into resentment and anger, which isn't good for either of you. IF you leave, I'm concerned that you'll have a lot of excess baggage, and it'll prove too heavy for you to carry.   By that, I mean guilt, as you seem like the sort of person who would feel guilty. Guilt is one of those feelings which can consume you, and make happiness an unattainable goal.

  So, what are you to do? My suggestion is to stay where you are and try to make things better by taking the suggestions above. Also, is she taking an antidepressant? Are you? If she has been on the same antidepressant for the last 3 yrs., it is not working and she needs to try another. There are lots of antidepressants out there, and this is not a "one size fits all" situation. Her family doc can help her, but a specialist, like a neuropsychiatrist,  may be better able to find the problem and treat it.

   If she hasn't been in therapy, that definitely needs to be corrected. Her doc needs to write a prescription for therapy. A good physical therapist can, for instance, teach her how to go from "wall-walking" to "walker-walking". Another benefit to going to therapy is that it will get her away from the TV and give her some exercise.

   If she refuses to try any of the ideas here, or any of your own to make things better, I think that you can seek legal advice guilt-free.

 Good luck,Becky

   

 

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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.

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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.

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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.

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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.

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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.

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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.

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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. 

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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

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On 8/14/2019 at 8:51 PM, heathber said:

Consider starting a GLAD diary. https://www.healthyplace.com/blogs/buildingselfesteem/2014/10/do-negative-thoughts-consume-your-mind-try-this-technique

 

I ♥️ you Heather 🙂

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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.

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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). ☮️❤️

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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

 

  

 

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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. 

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Oh..you all have touched a sensitive topic. She did go to a neuropsychologist...she refuses to do that again. I have the results locked up in a fireproof box. She saw the results and refused to believe the test results and refused to go back to them.

to try to help get her confidence back up, I took her to Ohio State for a stroke study to see if she would qualify for something state of the art they were testing. I forget the name, but it is some kind of fancy arm brace, that can sense you trying to move and takes over and does the task. Major money, but I was trying. She didn’t qualify but just barely. The sue was, she didn’t have enough strength in her left shoulder to support it. They told her, to use..my mind is slipping now.. muscle stimulation thing. I bought her one to use as much as she could to get her strength up and take her back up there. She used it, maybe 3 times and hasn’t touched it since. I have huge collection of things she doesn’t use anymore. Anyway, she gave up on that, and never went back there. I know stroke does strange things with your mind, doesn’t make it easier. 

I guess part of my issue is...guilt. 1 minute I feel like I am/have done everything I can to help her..then I start questioning myself again. Lack of self confidence on my part is a huge battle for me. She is on antidepressant already. I’ll talk to the PCP again 

thank you all again 

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Hi Jim, that is so hard. I also was refused treatment with Saebo for hand function because of insufficient shoulder strength. Being told no can really knock you down. In my case it made me more determined with my leg.  Please do not feel guilty that she chooses lack of action, that is not your fault. It's that old saw "you can lead a horse to water..."  the machine you couldn't remember the name of is eStim which is a particular style of TENS machine that actually initiates muscle movement.

 

If she refuses to help herself all you can do is look after you. Work on your own self confidence, health, happiness, etc. you too are allowed to have a life.

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Sitting here rereading all the posts and I feel such a loss for words. I am so sorry Jim. You have been doing so much to help your wife, to feed her spirit, to show and give her love. Your wife is so lucky to have you in her life. I'm thinking of you and am sending prayers and a kind ear your way. I'm so sorry for your pain and frustration. I think I understand why you feel guilt but I want to say that I don't feel for a moment you should. You really can't "make" someone be or do or have motivation and I don't think it is for lack of trying everything you can. I still think you guys could have more answers and assistance but Heather is so right. You can't help someone who is unwilling to help themselves whether it may be depression, stroke defecits and changes. I can only imagine how so frustrating your situation is. I hope you you take a chance and really find ways to help you to navigate through the process and help to deal with how this affects you emotionally and physically. Be good to yourself, take care of yourself and please know I'm here...so many are here to give our support. Sometimes just listening can help. I know that's what I need sometimes. 😒 Sending you best wishes. 

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Have a semi-related question. Any feedback or thoughts from either stroke survivors or significant other.

My wife doesn’t think I love her. I don’t hug her enough and don’t show affection enough. She brought up sex but I’ve explained before the last couple of times that ... the circumstances specifically with her left leg, and the weight she has put on...all that together about killed me. As I’ve mentioned above I’m working on loosing the weight I put on over the last 3 years. I lost 60lbs previously and was in the best shape of my life, but I have to start over. I spend a minimum of 2 hours ( 1 each way) going to/from work so that leave me very little free time when I get home.

Before her stroke, we never went out a whole lot to begin with. I have stomach issues and going out to eat really tears my stomach up in a bad way. If I can get my weight back down, that helps me keep my stomach issues a little better under control.

i love her, but am I failing her and not doing enough, or am I just in a no win situation?  I keep thinking about it and part of me is like....our/the situation has changed...roles have changed responsibility has changed.

then part of me asks myself if I’m just making excuses.

can anyone help me make since of what is going through my head?

she has said she can’t continue on like this and is ready to give up on us.

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She woke me up at 6:30am crying again.

After I got her up this morning I went back to bed, slept until 11. I find myself asking if I’ll be able to do enough to make her happy. My immediate family has said she will never be happy. So many thoughts running through my mind....going for a run

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Jim, I'm in a similar situation to yours in that I'm female and had the stroke. My husband has been my sole caregiver for the last 12 yrs.  +---------- We started dating just 6 mos. before my stroke, and by the time I had it, we were madly in love. Then BAM! I had a stroke. After my stay at the hospital, I went to a nursing home. I don't remember the hospital at all. What I remember is being in bed at the nursing home, thinking that I'd never see my husband again since I had stroked, and was not the same. Just then, he rounded the corner, and I saw him! And here we are 12 yrs. later and still married.  But it hasn't been easy. Life can be hard, and when you throw something like a stroke in the mix it can only get harder. We've had the same discussion that you describe above. In fact, we've had it a couple of times. I'm not sure we've had it at 6:30 AM though. Stroke wreaks havoc with your self-confidence and self-esteem. First of all, you were a VICTIM. I felt like someone had a Voodoo doll of me, and was sticking pins in it to terrorize me, and there was nothing that I could do.  I felt helpless. And now you're stuck in this private hell from which you cannot escape. If you're male and find yourself in this predicament, you may wonder how you're going to work, and take care of your family. If you're female you may wonder if your significant other is still going to love you now that you're "damaged goods". 

You feel like you are less of a person, and he wants, needs, and deserves a "whole" person to love. Then you gain weight, or have neglected your hair so long you're back to your natural color, and another voodoo pin is stuck in. Now you wonder, "How could he love someone who looks like this?" But you're too tired to do anything about it.

   Yeah, your wife needs reassurance that you still love her, in spite of the stroke. You may be thinking that you haven't done anything to make her feel otherwise. And you may not have;  having the stroke may have convinced her otherwise.

   Just one more thing, then I'll close this book, which I didn't plan on writing. Reassurance does not mean make happy. You are not responsible for her happiness. Happiness is a feeling which comes from within you. She has to allow herself to feel happiness, but right now she has a concrete wall built around her so that she can't feel much of anything. She needs a good shrink and a good antidepressant 

to help her tear that wall down. Best, Becky

                     

 

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Thank you Becky for your perspective. Many things that you have told me, she has told me.  I've told her over and over and over that I love her and i'm not going anywhere, but that's not enough for her.  I would normally agree with you on the shrink part, but after out last experience with a shrink, i'm afraid to go there again.  She gave my wife a LOT of confidence... but that confidence that she gave my wife was... if he's not giving you what you want/need then leave him.  So, that is where she has gotten the idea of leaving us from.

Her mom has lived with us for the past 16 years and she has come to be and said, i don't know how you put up with her. The whole situation is just so exhausting and sucking the life out of me. That is why/how i ended up in the nut house last year. Had thoughts of going back, just for an escape.

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On 8/16/2019 at 11:23 PM, Losthubby said:

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.

That’s horrible what she was told. When I went to therapy, psychology and cognitive, she was focusing on me. Not what my husband was doing. I’m sure she was only going off what your wife was saying. I was so angry at everyone. I blamed my husband of not being there for me, he was. Being a stroke survivor I can tell you that didn’t appreciate or understand what he was going through. Because the stroke changed me and I only thought about me.  I had to learn to get out of my own head and understand all that he did. 

I wish you the best and don’t forget to take care of you. If you change your attitude to a positive one, focused on yourself, she maybe might to.

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