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PaulNash

Advice need on how to hold a conversation

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I had a vertebral dissection three years and a few days back, left me with a quadrantanopia and a badly damaged memory.  Also fatigue, low self-esteem, and the other usual suspects.

 

I am lucky.  I have a supportive wife, who has acted as my guide and advocate through the medical system, come up with DIY rehab plans, looked for help for deficits, and generally done everything that she could to help.

 

However, elephant in the room is conversation.  Because of the memory issues, I find it hard to follow a conversation, to in company I tend to site to one side, listen and nod politely, and people are really happy (because they mostly want to talk).  However, in one-on-one situations (especially with my wife, and especially x2 when she is upset and need support), I just sit there are think "what should I say", "what would be appropriate here", and just block.  This makes her even more upset, she sounds off at me, I try harder and am less and less able to compose a sentence, much less a conversation.

 

I know that these sorts of things can be overcome, and one can develop strategies to respond appropriately or even start a conversation, but I have no idea where to turn.

In a work context, I can discuss technical matters quite happily, albeit referring to my notes.  It's the personal stuff, and ESPECIALLY with my wife, because of the social aspects and also because they are fare more emotionally laden than the mundane stuff.

 

If anyone has ideas about how to get started, or pointers to any resources about how to get past this, I would love to hear them.  I'm at my wits' end and despairing about this.

 

       paul

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It sounds like something to ask your speech therapist about.

I admit to having no first hand experience for this one so feel free to ignore me. but what about writing some notes about the things you want to say to your wife and the difficulties you are having? you can do that for work why not for this? It sounds like you need to explain to her why you are retreating as that is what she sees/feels and can't understand.  Can you come up with a physical cue you can give her that says "slow down" or "I'm working on it, I'm not ignoring you". Does writing things down help? can you have a written conversation as a way of relearning the skills

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Hi Heather

 

Thanks for the suggestions.  I'll try scripting and rehearsing responses to common upsets, and see how far that goes.  It cannot be worse that the current situation, and may even break the log-jam.

 

This flat affect is something that we have discussed in less fraught moments, and Linda understands that I have difficulty, but wants ME to figure this one out.  She also needs support in the moment, and after three years of dealing with this, is pretty weary.  Our kids sometimes try to mediate, which makes things worse in many ways.  When she is upset, Linda wants the problem to be fixed, not to be told that she must be patient, or that she must adapt to the new me.  She has a perfectly reasonable expectation of emotional support, which is no longer forthcoming.

 

It should not be this hard; it was always easy in the past.  I guess part of the problem is me (not knowing what to do or say), and part of the problem is Linda (waiting to see whether I'll fail again).

 

I've started working with an Occupational Therapist about strategies in general, both for work and home, and we are going to start looking at communication issue on Friday.  However, my experience of Occupational Therapists so far has not been terribly positive.  This is far more difficult to address that stuff like balance or motor coordination.  I guess it's also a side-effect of being cognitively in fairly good shape (especially regards reasoning), and probably being smarter than them (no offence intended, just honesty).  The system here is geared up for the people with major issues (they need the help far more that I do).  We've spent three years looking for cognitive rehab, and have come up with a bunch of snake-oil salesthings (Lumosity, anyone?  NovaVision?  Norman Doidge?  All quacks.)

 

We've also been to a couple of Psychologists for "Couples Therapy", which went nowhere; lots of fluff, nothing concrete, and no progress.  "Just be with each other in the moment and it will all work out and you'll have roses and little birds and love eternal".  I'm a network engineer, dammit, and Linda is a veterinarian.  We both want a plan, not wishful thinking!

 

Which is why I thought that it'd be a good idea to ask a community of people who have been though this to see whether anyone has ideas.

 

Sorry about the rants above.  

 

        paul

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I'm an ex network engineer myself so yes I get that need for a plan!  So often there is no specific therapy for your problem.  I find creating your own therapy/rehab works pretty well though. With all the research you've done you should have a good handle on how this recovery works by now. Analyse the problem, break it down to small things and practice the little bits that will build into the result you want over and over, and push a little further as you find you can do more.  Like training for your marathons.

Do you use a smart phone? try using messenger, whatsapp, or texting between each other during the day as a way to have a conversation without the immediate pressure to respond.

 

ranting has it's uses too - I find it helps to understand the issues try going back to each point in your rant and look at it as a problem to be solved. what needs to change? what are the component parts of that change? what can you do now? how can you build on that?  is there a left field solution or adaption you can use?  Try not to focus on what you can't do, that way leads down the rabbit hole.  Write it all down and there's your plan.

Once you have a plan share it with Linda and the kids so you can all work on it .

As you know just having a plan will feel like a huge step forward.

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Hmmm.  That's a great set of ideas.  Normal conversation is usually not a problem, although I tend to listen more than talk.  It's the situations where I need to give some verbal support.

 

My oldest daughter is amazing at defusing situations, and always seems to know exactly what to say (especially to Linda when she is super-stressed).  I'll see whether I can enlist her to come up withe the scripts and coach me.  This all feels quite artificial, but I guess it was like learning to balance again after the stroke.

 

Thanks, I'll report back on success

 

     paul

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BTW, if you are an EX network engineer, what do you do now?

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Paul, As Heather says you have good computer and typing skills and you may be able to use them in this situation. If I have something I desperately need to communicate I use the computer to write it down using one of the many writing progs available. Then I can either practice reading it till it becomes easier to say or as a last resort invite the intended recipient to read it. 

I must admit I have very rarely had to fall back on this method, after three years I have much better control over what I want to say. Although this can fall apart if I am stressed or under pressure!

Deigh

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I also would suggest talking to your Dr.'s about seeing a Psychologist for therapy. Cognitive Behavior Therapy is a great one and can focus on specific issues and home in on helpful tools. I have huge cognitive deficits. See my Psychiatrist every other month and now that I won my SSDI and have insurance I'm about to start CBT on Monday via my pc kinda like Skype. I'll let you know how it goes. I've not had therapy this way but I do know it has helped me in the past. I agree with Heather about Speech Therapy as well. ST's work on more than speech. They work on higher learning parts in the brain. It may help. Good luck.

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Paul, I don't have that problem either, and I also don't know you or Linda personally, so I don't know if my ideas are a good "fit" for you, so, I'll just toss them out there and let you decide if you can use them. One idea is to come up with a standard response to make whenever Linda is upset. Something like, "So what are your thoughts on the matter?" or,"So, what do you want to do about it?" or " Is there anything that I can do? " Or anything put in your own words. Remember when trying to come up with a standard response that there are things that Linda wants from you: She wants validation, or to know that her concerns were heard by you, that you understand without being judgemental, and that her concerns sound legitimate and valid.

 Sometimes, human touch can convey as much, if not more, than words. Next time she gets upset, and when she finishes telling you why she's upset, give her a big ol' bear hug (non-sexual), and/or massage her neck and shoulders, because that's where a lot of people carry stress in their body.  Hope something here helps.  Becky

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Becky I think those are great ideas. Especially for a woman, a woman who is a wonderful caregiver...that's incredibly hard work. Validation and as you said a big ole bear hug is a wonderful thing. PaulNash I too have issues holding a conversation, especially if there is emotion involved. I don't know what to say and my natural responses are not there anymore...I think I make it worse. I also just physically have difficulty getting my thought out. It can come off as flat (unless PBA has taken hold and I'm already a blubbering mess). I think maybe I could offer a hug better than words. I don't know though...we are all so different.

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5 hours ago, PaulNash said:

BTW, if you are an EX network engineer, what do you do now?

Paul, I'm now working as an assistant to the Service Delivery Managers in our Customer Support organisation. It's a role that keeps me busy, organising the time poor as well as providing support preparing reports and doing statistical analysis and making sure all the filing and governance stuff gets done. Having a tech Support and Network design background helps me to follow (mostly) the technical discussions at customer meetings.  It's officially a project management role.

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Paul,    As an idea, can I suggest you print out all the correspondence this conversation has created and put in a file. If the crunch comes you can get her to read the contents to show how much effort you have put in to try to solve the problem.

 

You are obviously working towards recovery but it must be at your pace. In my opinion attempts by outsiders to speed up this process are doomed to failure.

Deigh

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On ‎2‎/‎17‎/‎2019 at 4:22 PM, PaulNash said:

 

 

However, elephant in the room is conversation.  Because of the memory issues, I find it hard to follow a conversation, to in company I tend to site to one side, listen and nod politely, and people are really happy (because they mostly want to talk).  However, in one-on-one situations (especially with my wife, and especially x2 when she is upset and need support), I just sit there are think "what should I say", "what would be appropriate here", and just block.  This makes her even more upset, she sounds off at me, I try harder and am less and less able to compose a sentence, much less a conversation.

 

       paul

Oh totally my friend. I always have to have someone with me when I go to the doctors for they listen.. I last about 5 minutes then...I see gloves and want to know if they fit and did they come out of the drawer.. which one.. let's open all of them... OOh look.. I wonder if I can look in my own ear with this thing.... OOOOOO buttons...

 

This is a pretty accurate visit when I go to the doctors. seriously. I tell people please talk to me like you would do with a toddler. Don't talk to me like a toddler. That means.. short and sweet.  " Today we made pizza".. to the point.. not " We were walking down this street and we noticed the smell of pizza and made us think about making some for dinner" After you said walking down a street, I start to think how I wobble when I walk and then I begin to picture what street would be good for me to walk down. By the time I find a road, in my mind, the person talking is either asking me a question or walked away.

Is it my ADD or is it amplified by the stroke.. the answer is yes. It's worse since the stroke. I often just smile and in my mind listening to background noise or thinking how petty they are.

I can not talk over  other people or noise. I 'shut down' in a crowded place. I have tried talking in a restaurant with people talking,,, I normally just sit and smile. People who understand I have a difficult time with this, understand that I'll talk with little noise or when we leave.  My Aphasia is @ 1000% with noise  

https://www.asha.org/public/speech/disorders/Aphasia/  

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Keli, that is a remarkable description of the situation you find yourself in. What is most remarkable is that you can recall it and describe everything so accurately! I am fortunate that nothing like that is present in my life.

In my early stroke days I took my wife into the doctor's surgery so she could translate for me. Nowadays it is still important to have her close in case I get out of depth with explanations when visiting bank staff and government departments but mostly I can cope on my own!

Deigh

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Hi Kelli

 

I'm with you on the noise.  Restaurants, dinner parties, anything like that and I just clam up and shut down.  I can't track conversations, and on the rare occasions when I have something to say, I have usually forgotten it by the time I get a chance,  Or forget what I intended to say half-way through.

 

I think that these are all linked.  I'm loth to spend more time and more money on professionals who commiserate, spend a lot of time getting details and then tell me that there is nothing that they can do,

 

Which gets me back to trying to remind myself to talk, and to think out loud rather than internally.  This has been very helpful, now to try to translate it into actions.

 

 

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Paul, could your old girl write questions down for you, so you can get back to her? I reckon someone has already said this.

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I can so relate to this thread. Today, I went to a local "quiet store" and tried on a shirt. Disclaimer: I love children. I was a preschool teacher for many years. In the dressing room I was by myself but there was this mom and 2 children in another dressing room close by. I could tell one was calm and older...she was probably looking at her.cell phone. The other child was younger like 8...and a loud, whiny brat. Yes I feel awful saying this. 😳 Her mom said to get dressed they had to leave. She screamed in this achingly whiny voice..."noooo I don't want to...I want to keep this dress on it's pretty." Her mom said "Stop, get dressed." The young girl loudly whined "noooo I don't want toooo." She pretended to cry and was a torrential brat for like 5 minutes. Her mom said "Ok, the police are going to get you for stealing!". Needless to say I had to leave...I have no idea if the shirt fit even after having it on. I was past done. Wow this whole story is nothing about what you wrote about. 😳 In situations where there are several people, multiple- loud conversation, a lot of movement, large spaces like Costco, a dressing room with a loud bratty child, a lady running past me to the same store while it's raining because I am slow and then opened the door said sorry and then let it close. Well a few things can happen: I clam up and can't speak, I feel panicky, I can't talk over loud people either Kelli or a group speaking, again voiceless, and on the rare occasion I feel so frustrated that I have the need to be well bad. Like spraying a bratty kid with a water gun, bopping a rude lady running past me in the rain with my umbrella, bopping someone across the head with my purse, or maybe taking my shoe off and flinging it across the room at a human target. 😳 I am not proud...nor have I done these things but I have thought them. Now back to the thread...I understand that your wife expects and deserves support and attention. Rightly so and I think you agree. If you are like me though, being put on the spot is enormously difficult for me. I stutter and can't respond appropriately. Not that anyone is expecting too much from me...I just can't meet that expectation. Maybe have a talk with your wife (prepare ahead of time...notes are great) letting her know you love and support her and that you know it is sometimes difficult for you to respond like you want to or even used to. Maybe make these moments a time where you and your wife can practice better communication that helps you both get what is needed. Make an agreement that when you feel you need to say things to her and you find it difficult to say so. Now is the chance to take a moment and write down some thoughts..."I want to be supportive and be there for you. What can I do to help? How can I help you feel better. What do you need sweetheart? I hear you. Etc. Etc.". Your wife can help by maybe slowing down and writing to you as well. What she needs, her frustrations, what's upsetting her, in what way you can give her support, in what way she needs you, etc, etc. This doesn't have to be forever but can help you and her build better communication. It may seem sterile, less than perfect, practiced or even so unnecessary. Less personable...but we survivors learn new things by repetition and planning. It may take this before it can become more natural. Just some thoughts 🙂 I hope it gets easier.

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It also doesn't have to be about anyone being upset. It can be any moment where communicating easily is difficult. Step by step may be a bit "rehearsed" but it may also send you down the right path to improvement.

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Tracy

 

Thank you so much for the very thoughtful ideas.  I am seeing a speech-language pathologist next week to see whether she can help, and have started a calm discussion with my wife about the possible outcomes; especially what we do if there is no answer.  She obviously would not like to accept that there is no answer, in the same way that she did not want to accept that my memory issues are permanent; as with the memory deficits, she will adjust if she has to.

 

In many ways, I have more difficulty adjusting that she does.  I was brought up in a Calvinist household, with a strong guilt ethic, so every time I cannot remember anything (or deal with complex issues, especially at work) I view this as a personal failing and weakness, and blame myself.

 

The sort of toxic garbage spewed out by the likes of Normal Doidge ("you can fix any cognitive issues if you just try hard enough") only compounds the guilt (and ups the expectations).

 

One of the wonderful things about this forum is that it is realistic, without being brutal (cf. the "stem cell" section).  And the people who live here know what it is like, and are realistic, sympathetic and helpful.

 

Thank you again

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Hi Paul, virtual hugs from the other side of the world.

 

That self blame/guilt thing is really hard to get over, but I really think you need to try (as I'm sure you already know). It is one of those rabbit holes that will swallow you up if you let it.  You are here where you are and you did not ask for this, but it does not make you less "worthy" or less anything actually. What is is and you are working to change the things you can change so watch the self talk as it is a self fulfilling prophecy, some things the brain is all to willing to learn unfortunately.

 

Fingers crossed for a successful meeting with the speech path. There's probably no magic bullet, but she should have some things that are worth a try.

take care - Heather

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Hi Heather

 

Thanks, more very useful advice.  We've started talking about it, and while it gets uncomfortable at times, it is starting to clear the air.  Neither of us is necessarily happy about the status quo, but some of the resentment has started to diminish.

 

I think that you hit the nail on the head with the "less worthy" bit.  I grew up in a non-practising Calvinist household, where service (to elders, rest of the family, rather than broader community or a god) was considered a sine-qua-non (absolute requisite), and asking for help was a *HUGE* no-no.  So while I know that this is not my fault, I have an underlying belief that somehow the onus is on me to fix it, without asking for help.

 

I know that it's stupid, and having the stupidity pointed out REALLY helps!

 

           paul

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Paul one of my serious issues.  I have a little convo with myself in my head, then say something out loud to my family or whomever I’m with.

 

It used to frustrate me that they weren’t ‘keeping up’ , now they just ask if I have been talking to myself again.

 

Time, whilst maybe not fixing things entirely, does make it more bearable.

 

 

Teacy, I feel for you not getting your shirt. I also feel for that poor mum.  Shopping is not meant to be easy.

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8 hours ago, GreenQueen said:

 I have a little convo with myself in my head, then say something out loud to my family or whomever I’m with.

 

I can relate to that! Every Wednesday I work in the local museum. Well. I don't do much work but I do attend and thoroughly enjoy my workmates. They are intelligent and we hold some great conversations. Your plan comes in very handy there because to get my voice heard I have to be quick, something I'm not these days. I have to plan what I'm going to say and in the least gap of conversation, get my word in! I carry on talking even if I hear someone else saying something and mostly they recognise that I am GOING TO BE HEARD, so back off and allow me to continue. They are a great bunch.

At home the pressure is not so great, Valerie will wait while I struggle for words but doesn't finish sentences for me. She recognised a long time ago that I have to do things myself and she only assists when I'm obviously out of depth and in danger of drowning.

Deigh

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It's only been three years (my stroke anniversary was mid-January), and Linda has been sweating bullets trying to rehabilitate me.  I think that she has seen every deficit as a personal failure, and is only now starting to come to accept that the effects of the stroke are permanent.

 

I'm trying to work on this, spent a session with a speech-language pathologist, mostly coming up with stock responses that I can pull out in conversation to acknowledge and buy time.  I have discussed this with Linda, and she doesn't really want to know, but she understands that this is the way that things will likely progress from now on.  She is certainly much more willing to prompt me with memory issues that in the past.  It's been pretty tough for her; my memory used to be our filing cabinet; I remembered everything (yes, everything) in excruciating detail.  Now I struggle to keep track of a conversation, miss bill payment deadlines, and so on.

 

I'm much better about using a calendar and computer reminders for the administrative stuff. 

 

The difficulty is going to be memorizing the stock conversation responses.  Based on past experience, it'll probably take a couple of years.  I don't think that I can sit with a stack of cue-cards at the dinner table or when visiting friends :-).  Maybe a pair of glasses with some sort of built-in video display or one of those earbud-radios the the secret service use, so that the kids can send me cues. 

 

The discussion with the SLP cleared the air, if nothing more, and has made Linda more realistic about the sort of recovery that is likely.  It's not easy for her, and I guess that I feel responsible somehow and guilty for inflicting this on her.

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Hi Paul as we've already said. do your best to turn off that guilt message in your head. This is now something that "is" you did not ask for it and you are doing your best to fix it. I strongly doubt that Linda blames you, so stop borrowing trouble.  Save your energy for the stuff that matters.

 

Keep working, and hugs from a distance. Peter Capaldi had a set of those glasses in his last Dr Who series, you aren't the only one that wants some.

-Heather

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