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Before my stroke I was strong and smart and had a great career and a lot of skills and felt like I could do just about anything. Now my wife takes care of me for the most part. I don't like that feeling. I don't wanna be a burden. I've heard the 'you'd do the same thing for her', but I don't like, and don't want to be in this position. Obviously I don't have any options here. 

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You sound like a carbon copy of myself, at least you have your wife and be happy for that

Good luck because what else do we have

Ed

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I'm just sending you hugs Hogarth. These feelings are so hard to reconcile. I know you have friends here who understand where you are coming from. Me included.

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More Hugs Hogarth, you are only 1 year into this, it does get easier and both you and your wife will make your own adjustments to the changes in your life.  Be as independent as you can be. Life changes, nothing is forever, we can't go backwards so it's better to try and focus forwards.

 

Hang in there and try not to be too hard on yourself.

:hug:

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That was me too, but no wife. You could give wife a break and opt for a care giver.

You may get better at some things with therapy and practice. 

Tincture of time.

waiting is hard.

I spent my first year in wheelchair, unable to balance for months, i forget, 9 maybe.....but now I use a 3 wheel walker and walk without someone holding my gait belt saving me from falls. 

Some things are so slow to get better. Some things never do. For example the numbness in my body. But hey, I cannot complain because hey I stand, walk. with pain, but......you get my drift.

 

and at first I hated needing help, now I am grateful,unashamed to ask, because hey it is my survival. Do I bother others, well I know it can tire them out, that it is a responsibility that can overwhelm, and that caregivers need care too. That is my experience. But it is love, so accept it graciously when you need someone, because you have suffered a terrible injury and survived, so you deserve TLC, and time to heal.

 

and time to accept the great change,it is the longest road no doubt. and if you need any kind of help for crying or depression, please ask. There is no shame. You have been pulled from a burning building and ended up in an alternate universe. Be kind to yourself.

Know that adjusting is a process,and remember surviving was a heroic act. 

 

I honestly struggle with it because I was so independent, but I think of it now that I engage with other people in a new blessed way where there is compassion.

yes sometimes not, but in the end plenty enough. 

We do what we must to survive in this new world. It will take a hero. But like a Marvel cartoon, a team of heros, together.

 

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Give yourself time.  Your brain heals slowly, and will keep on improving for as long as you live.

 

I have had similar feelings often.  In my case, the first year was a blur, second year was more aware and varied between "better" and "much worse".  I'm into my third year now, and things are a lot more stable (generally improved and improving).

 

Last year I had recurrent thoughts that everyone's lives would have been better if the stroke had only been fatal.  No tensions between me and my wife about emotions and communication, not fights with the disability insurers about whether I am cured because I have my driver's license back, no stress about trying to restart my consulting business and watching savings dwindle.  And of course the insurance company cannot really claim that a corpse is still a productive person.

 

All that has passed (or is passing).  I am aware how grateful my wife is that I am still alive, ditto my kids.  Yes, they get stressed and upset about my deficits (especially the hidden ones, like memory and actually voicing what I want to say), but overall they are happier that I am still alive.  And so I am happier.

 

These things take time.  Give yourself some compassion and some forgiveness (this was not your "fault" , after all) and a whole lot of time.  Talk to those around you (especially your wife) about how you feel and about how they feel; try to make it clear that your mood is not their responsibility.  Try to get out, even if it's just to get fresh air.  Get as much exercise as you are able to.   Try to meditate (I've found that just a 10 minute "focus on breathing" exercise calms me down and centres me for several hours).

 

And know that you are not alone.  Everyone on this board sympathizes wth you.  We want to help, and so, I am sure, do those closest to you.  Give yourself permission to need that help and open up to being helped.

 

We love you.  We care.  So do many more people.

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Thank you all for your kind, caring, helpful messages. Your support is helpful and pleasant. I will look forward to better days. 

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On ‎4‎/‎19‎/‎2018 at 12:05 PM, Hogarth said:

Before my stroke I was strong and smart and had a great career and a lot of skills and felt like I could do just about anything. Now my wife takes care of me for the most part. I don't like that feeling. I don't wanna be a burden. I've heard the 'you'd do the same thing for her', but I don't like, and don't want to be in this position. Obviously I don't have any options here. 

I can relate to the feeling of working but I must disagree with you when you say you WERE smart. I believe you are still smart but I understand having a "broken brain" and I feel that way sometimes but when I need to use it watch out.  But when , not to be sexist or traditional, we have this ideal that has been ingrained into our being that the man in the one who takes care of us. That's how I see my father as.. I mean he is the one to take care of everything. With the exception of my grandparents. My grandmother was the  matriarch of us all.   Feeling as your, not you personally, manhood is fading and you in the way isn't true.  Your wife is helping you for she loves you and wants to help you. You didn't ask for this to happen and she knows that. If you don't like some of the feelings you have and can do more ,so she doesn't have to do it for you, then try. I'm truly not trying to be heartless.. really. I think this is yet another issues that I can't fully understand for I'm not a man. I hear more and more about men and their feelings with the spouse being 'husband-wife or patient-caregiver" I hope that you both can talk about your feelings. She may be doing more for she doesn't know it bothers you. Keep us up to date :) Good Luck :smile::hug:

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Thanks for your message Ms. Smith.  Regarding being smart or not, let me share a story with you on that subject.  I don't mention this much except when it's relevant. I am a member of Mensa, which if you don't know what it is, is an organization for people in the smartest 2% of the population as measured by standardized IQ tests.  I don't remember exactly when but at some point during the 1st year after my stroke I decided to try my hand at some carpentry work which I had been doing a lot of in the past few years. We moved into a new house not long before my stroke and there was a lot of work to be done here.  One of my impairments from the stroke is that my vision is greatly affected 1/2 of my visual field is gone. The day I tried using my table saw for the 1st time I cut my fingers badly and wound up in the emergency room. The nurse there who did tree aage on me was an ex military man. We chatted a little bit and he examined my hand.  I mentioned during our chat that I had suffered the stroke. When he asked me what happened I told him that I was stupid and he immediately said "no, you're crippled". It did make me feel a bit better in a strange way to hear that.  Later when I paused to really contemplate this I wondered if it was better to be crippled or to be stupid. They both don't sound very good.  I have continued doing work on our new house but it has been very discouraging because I often make foolish mistakes. I suppose it is related to memory problems I have as result of my stroke but it still is very frustrating and daunting. You could argue that it's not stupidity but I'm sure it has a lot in common with it.

 

 I'm intrested to hear what sort of feedback I'll get from this message.

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I am not a member of Mensa........ but do consider myself very gifted in mechanical things, I am an Electrical contractor and have worked for myself from the age of 20 and I did pass the state contractors test when I was 21. The problem for me is I can still do the work and understand it but the mental part is what hurts....... no stamina. I do a little and need to rest or lay down and that's not fair to customers that need something done or fixed now and not over the next week. I just keep hoping that is gets better but as of 17 months nothing.

Ed

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Hogarth, It sounds to me like your risk assessment circuit is damaged.  It's not that your stupid it's that you haven't done the risk assessment correctly for your changed abilities and put your contingency plans into operation. Part of this is that these were jobs you used to do without risk and now your brain and your body are not responding as they used to and you aren't fully compensating for it yet.  And you aren't "crippled" crippled means you can't do things!  You can do these thing you just have to approach them a little differently and make allowances for changes in your perceptions and response times.  So not stupid but certainly in denial to some extent. In some ways it takes a very long time for you brain to re-calibrate to changed physical realities.  There's a lifetime of experience telling you this is how "x" is done and this is how long "x" takes to do, but the conditions underlying that knowledge have changed and your brain hasn't caught up yet.

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9 hours ago, heathber said:

your brain hasn't caught up yet.

You have made some interesting points and have an atypical perspective. I will certainly think about what you have said. 

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There are many types of intelligences.,at least according to Gardner. And many theories/theorists about intelligences.

I think my behavior is more about needs wants gains avoidance and sometimes just because of the great unknown.  So I am never surprised about smart doing stupid. 

 

I am injured,not crippled, recovering,a survivor

 

 

 

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For both Hogarth and Ed, about being slower than before.  I am a network engineer, and I am still the person who is ultimately responsible for a bunch of networks.  It's been over two years since my stroke, my cognitive processes are still much slower than before, my memory is still shot to ribbons, and I still get seriously fatigued (especially in noisy environments like data centres or when I am battling with complex problems).

 

I went through a spell of thinking that I would have to give everything up, but a couple of my clients persuaded me to keep working (fortunately).  I take longer to get stuff done, BUT I document everything much more thoroughly (well enough that someone who has never seen the network before can pick up and be productive), I plan more carefully, and I take breaks.  Lots of breaks.

 

The end result is that my work is more reliable and predicable than before the stroke, and if anything were to happen to me any half-way competent engineer would be able to take over.

 

One thing that I have *not* done is drop my billing rate.  No-one has asked me to, and I have not volunteered.  I have asked a couple of clients why, and they say that they are still happy to pay for a known quantity, and while it may take longer and thus cost more, they have a more predictable outcome and a safety-net in the form of careful documentation.

 

So in some ways, at least, the stroke was a win for all concerned.  Try to take this as an opportunity to change the way that you work, and see where that takes you.  Yes, there will always be people who want it fixed RIGHT NOW, but they can either wait or find someone else.  It's quite astonishing how many urgent jobs are not quite so urgent when I tell them that.

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On 4/26/2018 at 7:10 PM, heathber said:

There's a lifetime of experience telling you this is how "x" is done and this is how long "x" takes to do, but the conditions underlying that knowledge have changed and your brain hasn't caught up yet.

Heather...that equation explains exactly what I have been trying to tell people about my sudden, ridiculous mistakes. For example.. When I step off a curb, my brain knows from experience how far down my foot should go. Now before it makes contact with the ground I have to realize that I should look down to make sure it is actually a curb or is it something else? Is it a driveway or is it broken pavement? Trip and fall is my middle name.  For me though..it’s my kitchen that presents the biggest danger..I’m trying to teach myself to slow down. I simply have to pay attention. Recently I placed my open hand on a hot frying pan. I had just removed the pan  from the burner. I had more than one going as I made quesadillas.  It doesn’t make sense when I try to explain it. But I honestly didn’t remember that it was the hot one.until it burned me. It wasn’t the burn that upset me...it was that I actually could do something that dangerous. What if I was with one of the grandkids? Is this evidence that I can’t be alone? The cascade of what if’s cause me the biggest stress.not the actual events. Now , that being said,I have not used a power saw.  But Hogarth had experience...it was his kitchen. I like your advice

 

On 4/26/2018 at 7:10 PM, heathber said:

You can do these thing you just have to approach them a little differently and make allowances for changes in your perceptions and response times.  So not stupid but certainly in denial to some extent. In some ways it takes a very long time for you brain to re-calibrate to changed physical realities. 

 

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I think If you'd been with one of the grandkids they would have stopped you. If you are showing/teaching others, the way you approach a situation includes slowing down to make sure they understand.  That may be a trick to use while you are relearning yourself. Imagine you are teaching the grandkids how to do the task and verbalise what you are doing and why.  Would be interested to know if this helps.

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Pam the story of burning your hand is one of my own. I thought that cooking and kitchen duty is something I know so well and just can do without an issue. What I found was I was a mess in the kitchen. Multitasking was a no go. Even sometimes single tasks would pose some issue...like forgetting, over looking, loss of time perception, etc. I have grabbed that hot pan or baking sheet bare handed just 2 seconds after I removed it safely from the heat source. What I have had to do is slow down and plan (I write my plan). Right down to hot pad use and reminders of hot pans. Seems so unnecessary but it helped me to form new habits and soon I followed those habits sans notes. I still have to truly limit multitasking...I get overwhelmed and I stumble and forget. Take things one task at a time (planned) for safety. I bet it gets better 😊.

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On 4/29/2018 at 11:56 PM, tmciriani said:

Pam the story of burning your hand is one of my own. I thought that cooking and kitchen duty is something I know so well and just can do without an issue. What I found was I was a mess in the kitchen. Multitasking was a no go. Even sometimes single tasks would pose some issue...like forgetting, over looking, loss of time perception, etc. I have grabbed that hot pan or baking sheet bare handed just 2 seconds after I removed it safely from the heat source. What I have had to do is slow down and plan (I write my plan). Right down to hot pad use and reminders of hot pans. Seems so unnecessary but it helped me to form new habits and soon I followed those habits sans notes. I still have to truly limit multitasking...I get overwhelmed and I stumble and forget. Take things one task at a time (planned) for safety. I bet it gets better 😊.

Oh, Tracy! Thank you, thank you for sharing your kitchen experiences with me.  I’ve been so upset about my mistakes.  Worried... Yes, I think many women and of course men are so accustomed and accomplished at multitasking, especially in our homes. (Work too;-) My laundry area is in my garage just off my kitchen. I’m so used to dashing through the house to grab up laundry, dash past the stove, stir a pot, drop clothes in the machine, transfer a load to the other machine, grab a basket..back to the house, drop basket on couch then back to stove...or some variation of that. Right? Since all of this..if I’m not in a stupor I’m in a hurry to catch up when I get a burst of energy.  Once I burned a saucepan to a crisp..discovering it seconds before it surely would have burst into flames.  I had caught a whiff or two of something burning and stil didn’t connect the dots.. Another time I used the bathtub to fill a bucket of water with warm water.... Hours later I found the water running down the drain. I just sat down and cried over the bathtub thing. I confess some incidents to my husband and he’s always so sweet and says it’s normal for everyone...but my brain is screaming “it’s not normal for me!” Then my panic and anxiety quotients rise again. I will try to keep notes..and start lists. I do that for other things. We started a new healthy eating plan with cookbooks and online recipes that I have been reluctant to use. I typically wait until a few minutes before I know my husband is due home to start any cooking. New habits..yes, I need those. I do need to slow down..and realize that I am changed..and try to learn from what my body tells me.  Thank you for this insight. The hot pan, burned hand thing I still see in slow motion...I knew from my minds eye what I was doing.. but, I was completely stunned when my hand made contact with the hot one...weird brain stuff. Thank you again,I feel better knowing that in some way what I’m doing makes sense to someone else. Of course I’m sorry this is happening to you too. I think this might qualify as learning to dance in the rain? I have so much to learn..

pam

I apologize for the large text..I’m having trouble with me eyes...

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2 hours ago, Blessed2behere said:

Oh, Tracy! Thank you, thank you for sharing your kitchen experiences with me.  I’ve been so upset about my mistakes.  Worried... Yes, I think many women and of course men are so accustomed and accomplished at multitasking, especially in our homes. (Work too;-) My laundry area is in my garage just off my kitchen. I’m so used to dashing through the house to grab up laundry, dash past the stove, stir a pot, drop clothes in the machine, transfer a load to the other machine, grab a basket..back to the house, drop basket on couch then back to stove...or some variation of that. Right? Since all of this..if I’m not in a stupor I’m in a hurry to catch up when I get a burst of energy.  Once I burned a saucepan to a crisp..discovering it seconds before it surely would have burst into flames.  I had caught a whiff or two of something burning and stil didn’t connect the dots.. Another time I used the bathtub to fill a bucket of water with warm water.... Hours later I found the water running down the drain. I just sat down and cried over the bathtub thing. I confess some incidents to my husband and he’s always so sweet and says it’s normal for everyone...but my brain is screaming “it’s not normal for me!” Then my panic and anxiety quotients rise again. I will try to keep notes..and start lists. I do that for other things. We started a new healthy eating plan with cookbooks and online recipes that I have been reluctant to use. I typically wait until a few minutes before I know my husband is due home to start any cooking. New habits..yes, I need those. I do need to slow down..and realize that I am changed..and try to learn from what my body tells me.  Thank you for this insight. The hot pan, burned hand thing I still see in slow motion...I knew from my minds eye what I was doing.. but, I was completely stunned when my hand made contact with the hot one...weird brain stuff. Thank you again,I feel better knowing that in some way what I’m doing makes sense to someone else. Of course I’m sorry this is happening to you too. I think this might qualify as learning to dance in the rain? I have so much to learn..

pam

I apologize for the large text..I’m having trouble with me eyes...

Pam you bet I relate 🙂! I had to make many mistakes before I made some new ways to plan. So many helped me here. I started out doing simple meals (for me) and prepped everything earlier in the day so I could work as slow as I needed to. It went from foil packs as I call them (individual pack per person with a protein and a multitude of verges, seasoning and little olive oil) baked in the oven at 350 for 40 minutes. Then I tried 2 things at once with early prep and tried new recipes which sometimes were a fail as far as coordination but delicious in the end. I learned to prep early everything. So I wouldn't get overwhelmed. I was the same as you a huge multi-tasker and I felt so defeated when I failed at this post stroke. I had to pick myself up and make a plan which meant focusing on one thing at a time. It ha gotten better though and honestly I feel less stress because I am not overwhelmed and I am fair to myself. My mom tells me "Tracy chores will still be there in the morning. No one is grading you...give yourself a break." So far it really is working for me. 🙂

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Hogarth I am realising that I have sort of hi jacked your thread. My hugest apologies. I also want to check in and see how you are feeling. I can relate to things feeling hopeless and just wrong. Be sure to keep your Dr. aware of how your feelings are going. Having a stroke for me was a huge slap in the face, I felt ashamed and hated it. I was always the bread winner in our house and pretty smart to boot...always was. Both of these things saw huge change and I felt helpless at helping it. I missed my old self sooooo much. Mind you I am still smart I just may seem less so to others sometimes...hugely frustrating. I'm sending best wishes to you and to let you know it did get easier for me. It took me accepting help from my psychiatrist and therapy. I still look forward to seeing my Psychiatrist every 2 months. Let us know how you are doing.

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Bless you, Tracy. I’m already hoping tomorrow is a better day for me in the kitchen. I have yummy things and a cookbook. The early-prep done ahead of time makes so much sense. Like when I was working and the kids were in school. I do have issues with clutter..which I have a lot of..I never let dishes wait til the next day..until now. Now I  do have to tidy everything up so that I have a clear, uncluttered work space. That way I can keep track of what’s going on. I pretend I’m one of the TV chef’s. And put ingredients in little prep bowls. I find that sometimes i can’t remember if  already added something..unless i see the empty little bowl. Does that make sense? I love your mom’s attitude.. She’s right of course! Oh, yeah..I forgot to say that I love birds..my yard is a bit of a bird sanctuary. I make my own hummingbird food. I used to make big batches. 4 cups water, 1 cup sugar formula multiplied. Well, I can’t tell you how many times I would have my giant pot and then ask myself..was that 8 cups or 12 of water? Then get out the other giant pot and re-measure that water. Now..I do one batch at a time.This is one of the things I left on the stove til it was almost boiled away. I plan to learn to set a big loud timer!!

 Thank you for being there..again and again. 

pam

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Pam, Regardless of where in our brains the stroke occurred, many of us have had problems multi-tasking. Timers can help. Also, people have had success using post-its and leaving messages to themselves on their cells.    Becky

 

 

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16 hours ago, becky1 said:

Pam, Regardless of where in our brains the stroke occurred, many of us have had problems multi-tasking. Timers can help. Also, people have had success using post-its and leaving messages to themselves on their cells.    Becky

 

 

Thank you..post its and messages on my cell phone!! Great ideas...

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Hogarth, We seem to have gone off on a tangent there. But your concerns are important to us, too. What I hope that you got from our discussions is that a lot of coping with a stroke, in my humble opinion, has to do with control. Stroke entered our lives without our consent, and robbed us of our life as we knew it. It took  control of our bodies, and, in the process, destroyed our lives. Part of the solution, then, is to take control back. You can take control by doing little things at first, but working up to larger things. Therapy (rehab) helped me a lot because it taught me that I could do things, even if I did them differently from the way that I did them pre-stroke, and slower. Everything you do, from thinking positive thoughts to running a marathon, is taking control back. Becky      

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14 hours ago, becky1 said:

. What I hope that you got from our discussions is that a lot of coping with a stroke, in my humble opinion, has to do with control. Stroke entered our lives without our consent, and robbed us of our life as we knew it. It took  control of our bodies, and, in the process, destroyed our lives. Part of the solution, then, is to take control back. You can take control by doing little things at first, but working up to larger things. Therapy (rehab) helped me a lot because it taught me that I could do things, even if I did them differently from the way that I did them pre-stroke, and slower. Everything you do, from thinking positive thoughts to running a marathon, is taking control back. Becky      

I think this statement is the most profound in a long time. It sums up basically all of our complaints after a stroke 

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