Husband's stroke not a bad one...

[catwoman!]

Hi, everyone! I've been reading around the intro board, and have read many of your heart-breaking situations. Many sound familiar from my father's stroke, many years ago. But I'm here because of a small stroke my husband had four years ago.

 

His MRI showed a tiny, teensy embolism, but we were also told that there had been a previous small stroke -- one that, apparently, no one noticed at the time. However, since I have noticed distinct changes in him, I can also remember a time when he also suddenly changed, just more slightly. It's as if whatever region of his brain was affected, was exactly where it happened again, and so the same changes are exacerbated.

 

Let me first say that my husband, Barry, is fully functional as far as the world is concerned. At the time of his stroke, he could not go to work for about eight weeks in total, and, in fact, we never informed people at work about what health issue had kept him away. All they knew was that he had been in the hospital, and that he had to recuperate. His analytical ability remains unchanged, and that's what his work consists of. He is able to drive himself to work. The changes are more subtle, however, they mean that he is not the same man to me, and to our relationship.

 

Barry's brilliance and humor were what attracted me to him right off the bat, and his warmth, caring, empathy, and humanity, stood out among the many other male creatures of the world. When I was diagnosed with systemic lupus, he was my champion, and cared for me in the sweetest way. Our marriage was incredible -- I always thought of us as the ultimate love story. And, as some of you have also experienced, when it's been that good, you miss it when this is no longer there.

 

First, the things that are merely annoying, not marriage-threatening: Since his stroke, Barry has ceased to 'finish things.' And I don't mean in the way people usually mean that -- a person who starts a project and walks away from it. No, I mean that every task in life has a clear beginning, middle, and end, and Barry's brain stops short of the end. Example, you want to get glass from the cabinet for a drink of water -- the task begins by going to the cabinet and opening the door, the middle is reaching for, and taking out the glass, and it ends with closing the cabinet door. He doesn't close any cabinet doors, drawers, his car door, put the lid on the milk, wrap a twist-tie around the bread bag, etc. He sometimes doesn't turn off the engine before leaving the car. He puts on his pants, buttons the button, buckles his belt, and doesn't zip up. EVER! It seems to me that our brains must have a very primal organizing mechanism that affects every aspect of life. I mean, even a monkey, wanting to eat a banana, goes through this process -- beginning, middle, and end. He sees the banana high up in the tree, he climbs the tree, grasps the banana, pulls it off, looks around to make sure nobody wants to take it from him, scampers to a safe place, peels the banana, eats the banana, and chucks the peel over his shoulder. Done. I wish I could recount all of the things Barry doesn't finish. This is not a matter of forgetfulness, or volitional inconsiderateness -- this is a break in a neural connection! And since every task probably has a different neural path somewhere in the brain, I feel that this organizing feature is something that every one of those tasks connects with, in order to do the steps in the right sequence. I have no other explanation for this strange behavior. I mean, it happens even with things that are critically important to him! For example, he adores our cats (he also volunteers with a cat rescue twice a week -- for many years). We have an RV so we can travel with them. He is careful not to allow them to get out when he walks through the door, in or out-bound. However, sometimes he doesn't close it behind him! And we are far away from home; sometimes near a highway! Now, knowing how much he cares about these cats, I know he's not just being thoughtless! When I tell him, he's horrified! He can't believe it, because he knows he would never do anything like that intentionally. But he's also mystified to how it could happen in the first place. I'm sure it's because his brain never even goes there -- to the end of the task!

 

Another thing that's different is that he is ignoring responsibilities, and being irresistibly drawn to games. He has always done the bills, because he's the mathematician and I'm the artist. Made sense to me! He also always insisted on going through the mail, because, g-d forbid, I should throw out something that has a check for $1.50 in it! The mail was HIS domain; I could not touch. Well, he feels the same way now, except that now he also never touches it. I have a dining room table that is piled so high with mail that much of it slides down at the slightest movement, and there are already full bags and containers of it on the floor and side chairs. That's in addition to the many large garbage bags full that our once-a-week household helper has taken upstairs to the "office" he never uses. He can't -- he can't get in there. I have tried --- I thought maybe he's just overwhelmed, and needs help. I labeled a bunch of empty boxes, and began sorting the mail into the boxes. Each utility had its own box, and every credit card and other type of sender, and I even had one for the junk mail, to show him I wasn't just chucking it. I had one box labeled, "Must open immediately," and another one labeled, "Looks important." I asked him three or four times to spend ten minutes with me to continue sorting, which he did. (He never did it if I didn't ask him to.) But when it was all sorted, it continued to sit there in the boxes, and new mail came in and landed on the table. I'd sort that, and he did nothing with it. He didn't even look or open the "Important" mail. Finally, the same household helper put the contents of each box into a folder, stuck the label on it, and took them all upstairs. So, you ask yourself, "Who is paying the bills?" Good question. Nobody. Until recently, I didn't even have access to his account, and since I've been unable to work for the last three years because of my flare-up, I had no money to pay bills, either. Fortunately, after a tirade about it, we finally put me on his account. This does not mean that I can pay any bills, however. He still insists that I don't know what, and how much, and when, to pay anything. So I have to carry on like a madwoman, a job I don't want, in order to get him to sit down and pay a few bills. There have occasions when the electric company came to the door to shut things off, and I've called him, and he told me for how much to write the check. The money is always there!

 

As for the games, well, it's out of control. We're not talking about the video games that kids and young adults play -- it's the old computer solitaire, Spider, Freecell, and internet backgammon, with people he doesn't know, and can't even talk to. It's completely anonymous. And then there's Sudoku -- he used to need a newspaper for the bathroom, now there are printed-out sheets of paper with the puzzles on them, all stapled together -- and bunches of those. But the reason I know it's pathological and not just a preference, is that even when he comes in from the supermarket, and brings in the bags (sometimes leaving one or two in the car for a day -- because it's the LAST one!), he will often drop the bags on the counter, and RUN to the computer - still wearing his coat. The milk, eggs, meat, and frozen food be damned. Since he's 'very thrifty,' this is not something he would have done pre-stroke.

 

And then, I'm also sure there's depression, of course. His doctor agrees, but also told me that he can't make him do anything he won't do, and taking anti-depressants is something he doesn't want to do. I'm on them, and I'm grateful every day that we have medication that normalizes our brain chemistry! I know that between the two of us, with our ailments, we'd be in even worse shape if I were still in that black pit of despair. But this depression, and the focus on games almost to the exclusion of everything else, the neglect of responsibilities, those things are definitely having an effect on our marriage. Whenever I want to speak to him about anything, I get an exasperated sigh in response. The things I've told him, and the letters I've written him, don't seem to have an impact. I think he agrees with me while he's listening or reading them, but he doesn't say much in response, and never writes back (I used to get long, heartfelt letters in response), and so we are just not even communicating like we used to. And he appears to have forgotten everything I spoke or wrote to him about, as soon as we're done or he finished reading. He was my confidante, my support system, my lover, and in my corner in every way, and I miss that man.

 

I forgot one other thing -- it's about orientation. When he was still in the hospital, an occupational therapist came and asked him some questions, and one of them was to describe what he remembers seeing when he walked through the front door of our house. He told her that right ahead of you was the staircase, and that it started on the right side and went up to the left. I was aghast, but gently asked him to picture it carefully. He thought about it, and still insisted that was the way it was. However, that is exactly opposite of how it is. The stair starts on the floor on the left, and goes up to the right. That was the worst orientation issue. Since that time, he is having a hard time backing out of our driveway. He thinks it's because he can't see the curb stones. He bought driveway lights, because he believes they will help him find his way better. But I know that's not the problem. The problem is that his brain is not letting him "reverse" the movements he has to make when backing up. Once I mentioned to him that in the twenty-four years we lived in the house prior to his stroke, he never needed driveway lights. This was not an attempt to make him feel bad, by the way. It was part of a discussion I was having with him to try to get him to agree to some cognitive therapy. I've been researching the neuroplasticity of the brain, and I know that with the right kind of therapy, we could help him make new neural pathways to compensate for the lost ones. Of course, like all other stroke patients, he doesn't believe that there is anything lacking, because he experiences his own brain as 100%, because what's left is a 100% to him. He doesn't know that there used to be more, and that he might be down to 98% (which isn't bad, I realize).

 

My real question is, and what I'm seeking, is information about the kind of therapy he needs. Cognitive therapy is something you don't find at rehabilitation centers. There is physical, occupational, and speech therapy (and I might be forgetting something), but not cognitive. Searching the web has yielded nothing. I'd like to know what kinds of games, exercises, or tasks I could do with him, and under what kind of conditions, that will help build those new neural pathways. I'm coming up empty.

 

I am very sorry to have written so much, especially in view of the fact that others are dealing with so much more. Just briefly, my father had a massive stroke in May of 1974, when he was only 52. He had been a smoker all of his life, and had loved cheesecake more than anything (although he was always thin). He had an embolism blocking his internal carotid artery, and he had basically been given up on by the doctors. My mother and I also had no luck trying to find a doctor to tell us what was going on. He was in a coma, had been taken out of ICU, and wasn't even on an IV. They fully expected him to die. We made such a fuss, and called experts at various other hospitals to try to put pressure on our local hospital. Finally, they gave him an IV, and someone spoke to us -- after a WEEK! Anyway, he was aphasic and paralyzed on his right side. It was so tragic that he lost his ability to speak -- he had been fluent in eight languages, and could translate sixteen with a dictionary. He had been a translator of scientific, medical and pharmaceutical subjects, and had translated new sections of the Merck Manual at Merck. Fortunately, this also meant he had great insurance, and my mother was able to be his caretaker for the nineteen years he lived. He ultimately died in a car crash, so he might have lived even longer. My father also changed tremendously after the stroke, and we knew and understood why this was happening. The things other people have reported here, were also true for him -- he wouldn't allow my mother to leave him, was suspicious when she did have to go out (like, to the supermarket), accused her (in his limited way) of having affairs, was suspicious of anyone who came near the house, was cranky, very emotional, and very frustrated. He had seizures and was on Dilantin, he fell a couple of times, and once broke his hip. My mother had studied medicine when she was a young woman (in Germany -- we are immigrants), and she researched neurology, stroke therapies, and other pertinent information at the medical library. She understood exactly what was going on, and I learned a lot from her. So I felt I was a little more equipped to deal with my husband's stroke, when it occurred.

 

But my own limitations are a problem. What would happen to us if he had another stroke? At the moment, I'm the one with the handicapped license plates (though I rarely leave the house). I'm the one with such fatigue that I can't look after myself, or even make it up the stairs. I've been living on the couch for three years. Barry has always had a very limited diet. Basically, he likes meat and fowl. And bread, and potatoes only french fried. And Chinese food. That's it. Oh, fruit, and some raw vegetables. But the mainstay of his diet is meat. He would rather broil a piece of flesh for himself than eat anything else. And when he does, he eats nothing else with it. He likes no sauces or gravies, no mushy food of any kind, no pasta of any kind, no fish (only some shellfish), no cooked vegetables. He has also never asked me to cook anything for him. So, after the stroke, he was sent to a nutritionist, in order to learn what and how he should be eating. He went, dutifully, for a year. At the beginning, there was an improvement in his diet, because I was also cooking for him. At the time I wasn't in a flare-up, and I though I would be able to carry on like that forever. I got him to eat a balanced meal -- there would be a little rice (which he will eat), and some almost-raw veggies, and a normal-sized serving of protein, like chicken. But as the year wore on, he started going back to the way he was used to eating, and I was starting to feel the fatigue coming on, and now things have been back to the way they were before the stroke. He is still eating enormous amounts of flesh, only now he's diligent about taking his meds. That's about the only thing he changed.

 

I don't want to sound like I'm complaining, although I'm sure that's how all this comes across. I do know that I'm very lucky, at least so far, that it isn't worse. I do appreciate so many things.

 

Again, apologies for the long post. I promise not to do it again.

 

Gigi

[swilkinson]

Hi Gigi

 

I have to say I am sitting here stunned after reading your post. It is like I can see the problem clearly but I have no idea at all what the solution is . Or even where you should look for an answer!

 

So I will just welcome you to the site, tell you we are here for you and hope that someone with a different experience to the one I have had looking after Ray for eight years, will see this and reply.

 

I can see how hard it is for you that your strong, intelligent, caring husband now has this "failure-to-finish" complex. It surely would annoy me too. Ray's problems are both physical and emotional and I have learned to cope with them as they have developed. I guess that is what most caregivers learn to do.

 

Good luck as you seek more answers here.

 

Sue.

[amie_1]

Hi Catwom

 

Big hug!!

 

I understand completely what you are saying and feeling. My husband had a stroke a year ago, and he/we are experiencing alot of the same difficulties. To us/me it seems like it would be easy to follow through with each simple task, putting bread tie back on the bread bag, pitting milk away in fridge instead of letting it sit on counter and spoil, etc... I know it seems like you are constantly following him around and picking up after him. I have talked to my husband and told him that I read somewhere that as you are doing each task, no matter how small, talk to youself in your mind or out loud and just state each step as you go along eventually the WHOLE process will get finished... i.e. getting glass out of cupboard, setting it on counter, getting milk out of refridge, opening milk, pouring into glass, putting lib back on milk, putting milk back into refridg, closing refridge door, drinking milk. It does seem to help, then eventually hopefully, he won't have to state these steps to himself, it just once more becomes "normal" to follow through the whole process.

As for the zipping up his pants, that is quite normal after a stroke, my husband does that as well, I also read that in some material from the stroke association, i just simply tell him, with a smile to zip up or just zip up for him, it's become a common thing in our house.

Hang in there I know how frustrating and overwhelming it all is for you, and how much he's changed with this stroke, I can tell you to dwell on the good things and consider your cup still half full, that is what gets me through, as well as friends and family that I can talk to.

message me if you like.

Anne

 

[arogers]

Hi Gigi,

 

Wow, you do have an interesting life!! I would say, yes, your husband's issues are cognitive. There is help for him in rehab! The speech therapist is also the person who helps with cognitive issues. The occupational therapist can help as well. One of the tests will be for him to describe all of the steps he would take in order to complete a specific task. It will be interesting to see what his mind tells him to do and what his body does!

 

I know what you mean about the orientation issue. My husband's orientation is "backwards" too. When I ask him to turn left, he turns right. When I ask him to push a lever he pulls. I guess it's backwards and upside down!

 

I think your husband has the "invisible" types of issues it is so hard to manage. I would suggest he be evaluated by a neurological psychologist who could more clearly identify what kind of therapy might help him with his sequencing and focusing issues. (There is probably such a professional at a rehab facility - even an outpatient faciity) Before he can get help with therapy he will need an evaluation so they know where to go with it. It sounds like some form a aphasia. His task processing abilities have been interrupted. It's interesting that these don't present themselves in his work! Does he ever seem frustrated by his behavior?

 

Good luck to you - I hope we hear more about this! You need to take care of yourself too. I am sure your fatigue gets you frustrated and anxious as well.

 

Warmly,

[Guest bessy]

:Clap-Hands: hi gi gi catwoman HISSSSSSSSSSSSamdagreat big :welcome: :welcome: tostroke nrt i havefound this to bethe best stroke support site thereis forany one whohasany thing that invoves STROKE hop youcan joi us all i A :chat: real soon sooner thanlater comeandmeetthegroup weareafun bunchwegetteogther in :chat: to talk with 1another ourgood timesas wel as bad timesssssssssssssssssssssssssssssssssssssssssssssssssssss werethere for 1 anotherallthe time. :gleam: now thative added my :2cents: in this :welcome: catch yousooni hope

 

 

BESSY :big_grin:

 

'

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[fking]

Hi Gigi,

 

Welcome to the site, I have no idea of what to say except his doctors would, in my opinion, be the best source of knowing what to recommend to you for his help as we are not doctors or in my case have not experienced those symptoms.

 

Let's hope you can find help before too long. You are having enough problems with your own health situations so your plate is running over from what you described to us. Again welcome and I'll keep my eyes open to see if I can find any answers anywhere.

[dstraugh]

Hi Gigi and welcome to the site as well as our corner of cyber space. I do not have any answers for you as I'm a survivir but I wanted to offer (((hugs))) to you and your hubby.

 

If your hubby is able to utilize the computer, may I suggest he also register as a member here. Learning how to negotiate our site may be a good cognitive exercise for him as well as provide him with support and encouragement.

 

Your plate is definitely overflowing with all you are coping with. Please know that none of us can be there in person for you but you're not walking alone.

[lady k]

i guess i come from the other coin i'm a survivor, but i have not only physical issues but cognitive as well I can understand your fustration as some of what you describe i have also done, yep left the water on and flooded the travel trailer i lived in, left food out and not put it up, and in my case the speech therapist was the one who worked with the cognitive issues, i do suggest you see about getting hin in to see a psychological neurologist i had one in the hospital and another when i left the hospital, about the only way i can explain is we work so hard to do the things we know we should we overload and kinda shut down, i don't think he conscously knows he is doing anything, mine has gotten better over time (I think) i don't forget things on the counter very much but i still have found myself with things not completed that i was doing, more so when i am tired, with working he may be overloaded, and part of his working puzzles is getting the feedback that he still has something up there to work with, for a long time i felt like i had lost my intelligence and i did lose some but have come to accep that i may not be a genius anymore but i am still at least have normal intelligence, it may also help him to know exactly what to work on, you both will be in my prayers. :dribble: :hug:

[catwoman!]

WOW! I can't believe so many of you stayed with me -- through that overly long, rambling post! You all deserve medals of honor!

 

And of course I am touched by your responses! So many caring people here -- it's quite overwhelming.

 

Thank you all for your warm welcome, and helpful suggestions! I hope I didn't sound like I was griping, because that's not my intention. I'm not as much "annoyed," although I used the word. I guess I meant to say that the little things would qualify more as annoying than important, life-changing... just comparable elements. I probably shouldn't have used the word, because what I really want is simply to help him. I can walk behind him and close cabinet doors and so on, no problem. I know what the cause is, and that he's not doing these things to annoy me. This failure to finish is only troublesome in that it might affect his work at some point, and I wouldn't know, and if the women at work might wonder if he's some kind of pervert, because he walks around with his pants unzipped, and at some point, something he doesn't finish may lead to a disaster. If I knew of a way that I can help with therapy, I would! I only need to know what to do!

 

arogers (sorry, I don't know your name), when I first read that you thought it was a form of aphasia, I rejected it because his speech is fine. He did have trouble with it while the stroke was taking place, and for a few days thereafter, but it's fine now. However, upon rereading, the second part of what you said hit home -- that his task processing abilities have been interrupted. So if task-processing is connected to speech, somehow, than speech therapy may indeed help. I will look into that.

 

And several of you have mentioned taking him to a psychological neurologist, and that's a very interesting idea. I did finally make an appointment with the neurologist who evaluated him when he had the stroke. I had a hard time persuading him he had to go! I forgot to mention that he's in total denial about the stroke -- as far as he's concerned, he's perfect! Everything is fine! I'm the one who has the problem. I know that is normal. However, it does make it hard to get him to agree to go to any doctor. So I have to try hard to get the neurologist to recommend a psychological neurologist, if that's possible. And that still won't guarantee that he will go -- this same doctor prescribed three kinds of therapy for him, as well as a driving evaluation, and Barry went to none of them. He's a very stubborn man!

 

The fact that he is so in denial about his stroke is also why I would never be able to get him to go online and join this forum. He doesn't like the whole idea of therapy, anyway, and this kind of support system, which I find very helpful, is totally foreign to him. He'd much rather be playing games.

 

While I think that his problems have not manifested themselves at work in a noticeable way, I'm sure that he might be considered a tad negligent about minor, unimportant issues. I'm sure his desk is a mess -- it always has been, and I mentioned his mail-problem here. However, his work is strictly cerebral -- the analytical kind -- and he's been just fine doing the work he's always done. Barry is a mathematician, and is an actuary dealing with insurance math. He was in the Ph.D. program in a very abstract field of math when I met him. The idea of "applied math" was distasteful to him, but when he knew he'd be inheriting two little kids along with me (I was divorced from my ex-husband, a lawyer), he looked around for a profession that might allow him to earn more than a professor could. I don't think that side of the brain is affected -- his calculating, analyzing, and writing abilities are as strong as ever. But I do wonder if people constantly have to tell him to zip his pants.

 

Thank you for your enthusastic welcome, Bessy; your understanding, Anne; your insight, arogers; your empathy, Sue; your acknowledgment of my own issues, fking; your embrace, dstraugh; and your prayers, lady k! And I know there is much overlap, of the true thanks I give you all. I apologize again about not knowing your names; I'm sure they will become familiar to me in time.

 

All my best to everyone,

 

Gigi

 

[RLT]

Gigi,

My hat is off to you. I can relate to all the frustrations you are having with the changes and challeges the stroke has had on your husband. In my case though, it is clear to everyone that my husband had a stroke. To live with someone who appears unaffected to most people must be more difficult. The fact that he is unaware of his own deficits compounds everything. Please do not think of your sharing as griping. We all need to sound off to someone and we all need to be heard by others who understand. Wish I had great words of wisdom to offer. All I can offer is a listening, sympathetic ear.

Ruth

[Guest bessy]

:happydance: once again cat woman PRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR come on overand joinus in a

:chat: where you will meet the best group of people tht i haveever met werenot only victims of DTROKE but weare friends aswell asallhave become good cyber :friends: becauseevery now andthen weall needa little

fromm1anothersee catch you sooni hope in a :chat: see ya sooooooooooooon i hope :yikes: hope you joinin :chat: sooner that later

 

 

 

 

BESSY :big_grin: