My worst relationship nightmare has just come true...

[Robyn]

My partner, who is one month post stroke, has asked me not to make any contact with her for the time being...no phone calls, no letters, no inquiries to her family, no visits to the Cape...nothing...

 

She said right now she feels like I'm not supporting her, I'm only helping MYSELF...to which I was completely SHOCKED. She said we both needed therapy (DUH...no kidding). I discussed that I felt she had been dishonest with me about her feelings...that she had mislead me that things were OK with us and that she wanted to be closer to me. She said it was just hard to put things into words. SHe felt she just couldn't deal with MY issues and HER issues now becasue of the stroke.

 

I asked her if this was permanent...she said maybe but she couldn't say right now. She just wanted to take it a month at a time...she'd call me in a month.

 

No "I love you's"...her words felt cruel and mean and painful to me...My mother, who used to work in a nursing home, said that this is not uncommon...all sorts of stuff comes out that never would've come out before.

 

I'm dying inside...this isn't fair... :Tantrum: ...I know it isn't about me but right now I'm just dying...

 

Any comfort or words of support are appreciated right now...thanks...

 

As soon as I can figure this out, I'll move this dialogue to a blog...

 

 

[kkholt]

Hi Robyn,

 

I am a caregiver - to my husband who had a stroke a year ago. When he had his stroke, all focus and attention was on him, and his recovery. I was so worried about him, he was the center of our universe for weeks, maybe even months. One day, we both had the observation, of how self-centered he had been in these first weeks/months. I don't think that is very uncommon or unreasonable for a survivor to be self-centered while they are putting all energy into recovery. It is a delicate balance for both of you - to get your needs met at this time in her recovery. She may not have any room to support you, and if she sees you as any kind of drain - on her recovery - she is in survival mode, and will likely do what she needs to heal. You may need to live with the realization that your relationship isn't a two-way street right now. She'll be needing more from you, than you ever thought you had to give.... and then some.

 

My husband and I had a very strong relationship when he had his stroke - this helped us both. Another thing that helped, was although he was very self-centered, he was appreciative and never had an unkind word.

 

Take care Robyn, I hope it works out for you.

 

-Karen

[Robyn]

Thanks Karen...I think my blog summarizes things better than my post. I hear you. And she didn't say she wanted to break up, only that she wanted to take things month by month. But it still hurts beyond description...

 

I can accept she needs to heal and I'm willing to wait...for awhile. I love this woman beyond compare...but she accused me of only supporting her because it helped ME...I wish she had just stabbed me in the heart...it would've been more efficient and less painful. I dropped everything to be with her...risked my job...spent money I didn't have...all to be by her side...to offer her my love and support. How was that in MY interest...and serving ME alone...?

 

SIGH...I am in pain...and I'm trying to process. WIthout the legal paperwork I have no recourse.

 

Please let me say, anyone that believes gay marriage is a bad thing needs to walk in my shoes right now and feel my pain and know what I am experiencing...hopefully it will open their heart and help them to realize love is love, no matter what form its in...

[bstockman]

Robyn,

Sorry to read this post. It may be the stroke.. or it may not...

Illness, or crisis in a family can either bring people closer or.....drive them apart.

I think you need to look inside you ..... do you want to be kept dangling by a string month to month to see if she decides she wants you back in her life? Or it may be time to close a chapter and move on with your life and happiness. I don't know how long you were in your relationship, but it didn't sound like a long time.

 

I understand she is recovering from a stroke, (been there, working on that) but to treat you the way she is and expect you to wait around dangling for a "crumb" to me is not a "good"thing and not something you would say to someone you cared about.

 

I know this hurts you very deeply and I know you were commited and trying to do what she asked.... but don't get stuck in the sand..

 

((((((((((((HUGS))))))))) Bonnie

 

 

[Guest MelBaker]

 

 

 

:Good-Post: You have all my sympathy Robyn, amnd I agree with Bonnie - the stroke does tend to rip away the curtain and sjow the real "man/woman behind the mask" Th first thing it affects is the emotions and they come through, raw and unfiltered a lot of times. People always wish tht they could get the real stuff fromothers in their lives - but in this case, I don't know. Speaking from a survivor view, I really agree with Bonnie that for her to expect you to wait around on a crumb is really not a good thing. Please get some physical world counseling to go with our virtual world here....... I really hope things work out for you - kepp us updated..... :Good-Luck:

[Robyn]

Thank you for your honest observations. We've been together 3 years...it may not sound like a long time but within lesbian relationships, this is intense and the equivalent of...I don't know...10+ years with a straight couple...hard to explain unless you've been there done that. I think you'll have to just trust me on that one.

 

Will I wait forever...no...but its only been a month and I pledged I would accept what happens so I'm willing to give her SOME space and time to heal a bit more and see what she has to say. Again, if you read my blog, some of it might make more sense... http://www.strokeboard.net/index.php?autom...log&blogid=290& To sum it up, when she is well, she is able to overcome some of her relationship deficits and intimacy issues...now that she is not well, she doesn't have the tools to help her overcome those issues. We worked hard on them while we were together...and I accepted them as part of her. But what hurts is her belief that somehow I'm not being supportive...honestly, she won't let me...which is a shame.

 

I reached out last week to try to find a therapist to deal with this, plus I plan on beginning work with a life coach to help me cope as well. I am DEFINITELY finding the support I need outside of this group, but y'all do help me understand things from HER perspective so that is ONE of many things I am doing to help myself right now.

 

I'm having a hard time sorting out what is true and what is just the emotional deficit from the "brain damage". I have a hard time believing she actually thinks I'm not being supportive...that all the things we've shared for 3 years are just one big lie...I just can't believe that...not right now. Maybe I'm an optimist or a romantic or whatever, I don't know...but I just can't go there...not right now...

 

Thanks for listening!!!

[lisas]

Hi Robyn, :chat:

 

First let me say how sorry I am that you're going through a difficult time right now. :friends: Life just isn't fair at times. But we must all push forward and make the best of even the worst situation.

 

Stroke does affect people in so many different ways. It's hard to say though if what your friend is feeling, is how she felt pre-stroke. It sounds like there were some issues before that may have made her say the things she has. All relationships are difficult at times.

 

For us, my daughters stroke has brought us much closer. Before the stroke though, we butted heads on many issues. We never no what tommrow brings, so live for today. Get your life in order. Figure out what you want. Get the help you need to go on. No matter what happens in this situation, take care of yourself. Hopefully the rest will fall into place. :Good-Luck :hug:

[Sudz]

Robyn

I am a 4-yr F survivor of a severe stroke as a result of a burst giant Anneurysm

 

am so sorry to hear of the pain in your relationship as a result of Jane's stroke

The stroke really does do strange things to we survivors My husband of 30 yrs has been nothing but good to me

I of course was very angry & bitter at first it has taken this 4 yrs to come to some acceptance of the changes

I feel,felt I am a burden and have messed up my famil'y's lives and feel unworthy as II defined myself by what I did & could do -- not by who I am so because I can not only no longer do and am now so dependant upon him

There are days I love him fiercely and others I cannot stand him -- through no fault of his sometimes I plot as to how I could take care of myself if I left in my distorted thinking I am running away from broken dreams & plans.

We survivors are an emotional, mixed up-messIt takes me a lot longer to process things and even longer to see reality

Part of dealinfg wh this is some amt of self pity and grieving for what is lost.

The stroke not onlyestroys lifeas the survivor knew it --- it totally impacts the life of their partner/caregiver & familieswhen I become selfish as to how tough some of this is Wayne in his infinite wisdome reminds me it affected him also

I ythought "poor me" far more often than "poor us"

it sounds like you & Janehave avery loving comittred with a positive history- the necessary requirements for workingthrough a life crisis together

Robyn keep coming back for upport and perhaps some insight into the fear, anger & desparation of a stroke survivor.

My heart goes out to you as I understand that killing pain in a relationship this may serve to further cement your love commitment & relationship just one day & step at a time

 

Susan

[larrymm]

Hi Robyn,

 

I feel very sorry for you right now.

 

All I can do is speak from a survivor's perspective, but I can relate to a lot of the words others have written to you already.

 

To sum it up, when she is well, she is able to overcome some of her relationship deficits and intimacy issues...now that she is not well, she doesn't have the tools to help her overcome those issues.

This is basically me in a nutshell. Before the stroke, I used my various "abilities" to basically avoid relationships. Now, because I don't have those "abilities", I have no capability to lie (white or otherwise) or sugarcoat anything. It is what it is. I used to joke with my sister that the doctors cut out my tact when I had my brain surgery. Blunt honesty? I had heard of it before but I think I give that a new meaning now. What I am saying is that everything takes effort/energy, pre-stroke and post-stroke. One might have done something pre-stroke and, since energy was a lot "easier" to come by, one was able to do it. In a post-stroke world, one has a finite amount of energy to go around and one realizes one doesn't have the energy to do that particular thing. So, one does the basics instead (there comes the brutal honesty).

 

I used to feel there were lots of things I didn't want to have happen (due to embarassment or whatever). Now, that list is infinitely shorter. I tend to look at things as if I don't do X, will the world stop spinning? No. Unfortunately, whenever I use that logic I always end up with the same answer, so it's not always helpful. Side note: this is not good for people in general but it does have its uses. Thankfully, I have more things I would not like to have happen now as time goes on. A quick example for those who are wondering what I am talking about: having an "accident" in your pants. Desirable? No, but will the world stop spinning? No also. So, in the end, life will go on, you just may have a few people to explain things to...

 

I do know that, especially right after the stroke, I just had no capability to deal with others. Relationship? Out of the question. The ultimate ME mode. Like others have said before, people who had strokes initially go into survival mode. And you have the ME mentality to deal with too. The ME mentality tends to go away when people who have the capability post-stroke to empathize (some do, some don't) are shown (in a nice way and after they're past survival mode) that it isn't all about them. I don't know about everyone but that's how it was for me.

 

Ultimately, what I'm saying is you can't depend on what a survivor says early on. I can't speak for other survivors, but if you asked me what color the sky was when I was two months post-stroke and asked me again two years post-stroke, the odds of me saying "blue" would go from 75% (two months) to over 95% (two years). And this is a question with no emotional content. I would imagine the percentages would be lower in that case but you would still see a great rise over time.

 

And I do agree about the "crumb" thing, but I would weigh it heavily with a grain of salt.

 

Sorry for the rambling...

 

Larry

[Robyn]

Thank you everyone...I'm trying to remember it is only 1 month and I hope as one more month goes by, she will be better able to deal. I don't believe her stroke was so severe that she is incapable of empathy...I do believe it is there because I saw it in her when I was with her for almost 2 weeks. Right now she is under the influence of her family who have intimacy issues overall and who smother in lieu of real intimacy. I'm hoping in time as she heals and leaves the Cape, she will be able to have a real dialogue with me.

 

I'm also trying to, at some level, accept this may be it...its over...but I'm not ready to give up QUITE yet...

 

Thanks...

[arogers]

Robyn,

 

I understand your pain. I'm sorry you are experiencing this life path. My husband and I will be married 4 years in September and he seriously stroked 10/2004.

 

I guess I have a few issues with your idea that your gay partnership is so much more intense than my heterosexual one - but that isn't the issue here. Trust me when I say we have had an extremely intense five years together - years beyond most normal five year relationships.

 

To me, the issue in all your posts is the pain you are in. Without exception you have explained in depth your pain, your frustration, your lack of understanding why she is doing this to you. My dear, your partner has suffered a serious stroke. Your world has been turned upside down due to relationship problems.

 

Please don't expect her to have sympathy for your feelings. Her world has been turned upside down due to health problems that may or may not resolve themselves to the point of her even returning to her career. Right now it is taking all the strength within her to regain that which she has lost. She is not the person she was prior to the stroke - and she never will be. She won't wake up one day and suddenly find her life just like it was the day before her stroke.

 

As far as self-centered in concerned. Excuse me - who suffered the stroke? Who has to fight everyday for some sort of normalcy in thinking, moving, talking, eating, bathing, going to the toilet? Yes, my husband is self-centered. No, I don't think it's all about him now. But, I'm the one who can move around without difficult, put sentences together, read, write, see clearly. I don't take 17 different medications and two shots of insulin everyday. So, I guess if he is self-centered it's because there is alot of emphasis on his health these days.

 

You will live with or without your partner. For right now, concentrate on getting some help for yourself so you can understand yourself a little better. Maybe this is a good thing for you. I understand, because of my co-dependency issues how my own feelings of self-worth have at times been irroniously tied to another's relationship with me.

 

Good luck,

 

 

[Robyn]

Ann...I'm going to try to respond to some of your comments, although I have to say I'm feeling a bit frustrated. My comment on my lesbian relationship was trying to help people understand that even though we were only together 3 years, it was incredibly intense which IS typical for lesbian relationships. It was not meant to be a commentary on how gay relationships are more intense than hetero ones, as a rule. Having been married for 11 years before I began my relationship with my partner, I am coming from a place of experience. I am quite certain that the relationship you have with your husband is incredibly intense and for that, I am very happy for you...we all deserve to have the love of our life.

 

As for your next comments...well yes, I do know she has had a stroke...that's why I'm here...trying to gain understanding as I'm not able to be in her head or even anywhere NEAR her to understand what she is going through. That's why I'm reaching out, and asking, and searching. I am in pain and am entitled to feel that pain... I don't believe I ever said "why did she do this to me" because a comment like that implies that I believe she is doing this purposefully and with malice, which I don't believe she is doing. Did her comments hurt me...yes, but I also know that it is her circumstances that have caused her to say these things. And if you read my blog, you would understand that I UNDERSTAND that... My world was turned upside down because of her stroke, not because of relationship issues. Unfortunately the stroke took away her coping mechanisms, either permanently or temporarily, to deal with her relationship issues. Before, she could deal, now she is unable to do so as the stroke took that away from her. So I believe the STROKE turned my life upside down...

 

I don't think I expect her to have sympathy for my feelings...and I've never said that to her...but I did expect the people around her to have some empathy for them. I was made to feel like an outsider almost from the get go.

 

And as for her being self-centered right now...I've never said I didn't accept that. In fact, I told her on multiple occasions that her primary job was to get better, period and that our relationship could wait. I didn't expect to be totally cut off from her which is where my pain is coming from...that seems so harsh and I'm trying to honestly understand what she is feeling and why she would react that way...but I accepted that she had to focus on herself. I let go of that the first moment I saw her and knew she was alive and would survive this, albeit changed profoundly.

 

I know I will live with our without her...I believe I know myself fairly well and know HER very well, too. I will survive and have never thought otherwise...but that doesn't mean it isn't painful for me too...

[kkholt]

Robyn,

 

I don't think the sexual orientation is as much of an issue - as the people in the relationship itself. You had a long-distance sometimes-struggling relationship that neither Jane or her family are nurturing.

 

You have a good grasp of one of the major benefits of the site, is to have some insight to the other-side-of-the coin. There are lots of survivors here, that are able to let you know what it may be like to walk in Jane's shoes. For that, I as a caregiver am truly grateful to be able to be reminded so. It has been one of the best gifts of this site.

 

At this point it's probably too soon to assume anything about Jane's ability to cope or otherwise. The only way to have an even remote understanding of what could be going on with Jane, would come from being with her on a constant day-to-day basis. And you have not been afforded that. You will also likely be reminded of this by her family if you get outside the place they are comfortable with.

 

It may take a while to have a good understanding that Jane will not be the same person she was before the stroke. The physical changes are sometimes easier for some to accept than the emotional and cognitive changes. At some point after a stroke in a relationship we all have to learn to adapt to the new arrangement, or we move on. It is a pretty heavy time in your life when you have to grieve for life and person who is still alive and every movement they make reminds you so.

 

It seems Jane's family may have taken this opportunity to remove a relationship they didn't approve of or in their opinion doesn't benefit Jane currently. This is likely not going to change on their watch.

 

It appears you may have just a couple choices - one to wait as Jane has asked, and trust she will contact you when she is ready; the other would be to move on.

 

Robyn - you likely in your heart know what the right thing to do is, it is usually the hardest choice to make.

 

My comments Robyn, are meant to help both you and Jane, that is why you are here, that is why we are all here.

 

For this brief moment in our lives, you and Jane are both very special to us.

 

-Karen

[Robyn]

Thanks Karen. I have been very willing to adapt and work through whatever changes are/were ahead of us. Right now it is just not something she can comprehend. I think she heard the words but it appears to be bouncing against her brain...understandably so...

 

I have two choices I know...you asked me which one was the harder one...waiting feels harder for me right now. I don't know why, but it is. I want the answer now and I know I can't have it. To protect myself there's a little, nasty voice inside that is saying RUN...just let her go... But that's just not who I am...I won't be a doormat, but I cannot and will not run away just as the going gets tough. Even though we never said "'til death do us part, in sickness and in health", doesn't mean i don't feel committed in that way. And you are right, orientation doesn't really matter as I'd feel that way if I were in a relationship with a man...I wouldn't run away. Look at Andi and Steed...she was there as a caregiver even though they were not married and that has ended for her as well...at least for now. So running would be easy to do, but is not me.

 

I can give her a few months and see if the light returns. If not, I will bid my adieus, as painful as that will be, but leave the door open for her to always come back into my life if she feels so inclined...I may be available and willing...I may not, but I'd want her to know that the door is ALWAYS open for her.

[charmin]

Robyn,

 

It really has been difficult, but I want you to hold on to something when things get rough and Jane starts saying things that hurt and you know in your heart she would not have said them pre-stroke, please remember it is not her. Yes Steed and I are over, he came over tonight for dinner and continued to tell me he never loved me and he should have walked away three years ago, I knew that was not him. However even if we are not together I will not give up on the fact that he will become who he was before the stroke. Everyone says things will never be the same but I think that is bullshit, I know Steed is in there I feel that fact that he is there and I will not give up on him. Please just hold on for a little bit longer, for us we have no reason to stay we are not married, but if they don't have us to show them how they were pre-stroke they might not remember. I truly believe people can make a complete recovery, true the stroke will always be part of the past but the future has so much to hold. I don't want to hear that there is a new normal anymore, I am trusting that the old normal is somewhere inside.

 

Keep your head high,

 

Andi

[Robyn]

:friends: Thanks Andi...I'm sorry Steed is saying those things to you but yes, it seems that it is the stroke talking.

 

I just got off the phone with a friend who knows both Jane and myself well and she said based on her 17 years of health care experience particularly with stroke victims and her knowledge of our relationship, and Jane's little demons, that there is a good strong chance Jane will start to heal then come back to me...perhaps changed a bit but that she thought she'd come back.

 

And her best advice of course, was to make sure I continued to take care of myself...which I am...little by little! Friends are priceless...

[arogers]

Robyn,

 

I knew when I posted you would not be happy to read what I'd written. For that I apologize. I wanted you to see though, just for a moment that the aftermath of stroke isn't at all pretty. Don't delude yourself into thinking Jane will be at all like she was before the stroke. From my perspective, as long as you can live with a worst-case scenario your relationship can survive.

 

I've said it before on this site. We hear from survivors who are blessed to have the ability to post, to put together their thoughts in a way others can understand, who are independent enough to care for themselves, who have the cognitive abilities they had prior to their strokes to a large degree. We hear from caregivers who's loved ones have many more severe deficits. We are our loved one's voices in many respects.

 

Many times the things we say, Robyn, reveal our underlying emotional state. I've got to tell you, nobody here can clearly define for you what is going on in Jane's mind right now. This is so early out from her stroke there will be many, many changes over the next months and years. You know, I've read of many survivors who have been in rehab for months and months. Their focus has been on getting better - not on their relationship with their husband, wife or significant other.

 

I'm being tough on you for a reason. Things won't be the same with Jane ever again. Many things will be just like they were before the stroke, but there will be things that won't be. my husband and my situation is different than some here - the same as others. Yesterday was a particularly difficult day for me - as I've heard said before, "the light was on but nobody was home" when talking about someone with dementia. You never know the truth of those little statements until they happen to you.

 

Above everything else, you need to come to peace with yourself. As hard as this time is for you, please remember there are others who have walked in your shoes. There is no manual for how to do this thing. I wish there were - it'd make all our lives alot easier. We sometimes want to hear what we want to hear, not what we need to hear. Believe me, I'm that way. It's my observation that you may be that way too. That doesn't make us bad - it makes us stubborn maybe!!!

 

Anyway, as I said earlier, your response wasn't a surprise to me. I'm sorry if I hurt your feelings, but I hope something of what I've said will be helpful to you in some way.

 

Best wishes,

[Robyn]

Ann...thank you for responding in a different tone and manner. I know that the aftermath of stroke isn't pretty...I've observed her and read enough that I know things WILL change for her. One month out, as everyone has said, it is unclear what is permanent and what is transitory. Physically, I think she's well on her way to independence. THe MD's said the stroke was "mild" and she was room independent and walking with/without a cane by the time she was discharged from the rehab hospital. Having spent a good two weeks with her face to face, and knowing her as I do, I know she is struggling to make sense of everything emotionally and make peace with having to be dependent on people, which is her achilles heal. I also know her well enough to know she is reverting to old habits to cope...habits she had long since shed when she was healthy but she is unable to tap into her coping mechanisms so soon after the stroke. I know her therapist will bring her back to herself, as close and complete as that is...I have TOTAL faith in that. I don't believe that she has faced a serious emotional deficit from this. Not from my experience being with her...I have that data to fall back on and I DO know she loves me but as you have said, survivors don't have the energy to focus on relationships in the early months, only survival. When we are face to face, we can adjust...when it is on the phone, as our relationship was, it is work and I understand and am making peace with that. I'm still upset with her family for feeling like I don't need to know what is going on with her...for keeping me continuously out of the loop. There is NO reason why someone from her family COULDN'T contact me and tell me what is going on, even if Jane didn't know we were in contact. That is sad and pathetic and disrespectful to my relationship with Jane...and that is what is so painful for me right now...

 

I am the type of person that continually seeks answers...I guess that is what makes me a good college professor...but I also know that is a difficulty in moments like this. Someone asked me what is the hard thing for me to do right now...waiting in limbo is hardest for me and I know that is where my learning lies right now. So I am working with a life coach and therapist to make myself healthy 1) for myself with or without her, 2) for her if/when she is ready to build our relationship slowly.

 

I am processing and this is all so new to me...all I'm asking for is honesty, tenderness, and some understanding as I'm not getting that from her family right now... Does that make sense?

 

larry...thanks for your clarification. I knew what you meant but I appreciate you clarifying your point!

[bstockman]

Hi Robyn :console: hugs you will get, but I think we want you to be aware of the difficulties also. The Caregivers know what they have gone thru. Sometimes survivors are a bit in left field for awhile..

 

Recovery is slow and the first few months are overwhelming, kind of spacey. I remember I felt like I had been dropped on another planet.

Light seemed to bright, noise was too loud. I had the attention span of a gnat.

I would feel great sitting in my chair..wow I feel good, and stand up and practically land on my nose... oops (bad word) reality .... not all better, still screwed up. I think it takes awhile to sink in,

The first year is the hardest, I had a mild stroke compared to MANY here. I have very few (mild) physcal deficits, my deficits are fatigue, cognitive and emotional.

 

I have been posting to help you understand some of the things that may be going on in Jane's mind or emotions. (may not be -- but trying to give you a look at what might be.

I am glad you are taking care of yourself!!!! :cocktail:

[Robyn]

I like honesty and reality...trust me...I want to know the good, the bad, and the ugly so I DO welcome that. I guess her initial tone put me off a bit and it felt like she was chastising me rather than keeping me informed with reality, know what I mean? I can take harsh reality, but its all in the delivery...

 

It sounds to me, based on your description, that you have a similar situation to Jane's...hard to compare virtually, obviously, but it sounds similar. Some cognitive, some physical, some fatigue, and no doubt the emotional, as I'm experiencing right now. But again, I'm not sure how much is permanent, and I feel like my time with her a few weeks ago tells me that much, although not all, will be transitory. Maybe, again, this is hopeless optimism, and I am trying to prepare myself for the possibility it is over, but optimism I think is good right now...it sends positive healing vibes to her which is so important.

 

Keep sharing with me...keep me grounded in reality...I need optimism but I need reality too so I will be juggling the balance right now to keep myself sane and patient as I wait to hear from her in a month...