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food and liquid issues still...



i dont know where his strength is coming from.... i have no idea.... but Dan got up and showered and micromanaged shaving ... shaving can take at least a half hour to forty five mins to complete .. dan is that picky and i swear he grows hair as i shave it....he is wanting to use a shower seat though... so it is a about a 2 hour affair every other day to shower and shave, lotion and groom and then there are the rituals .. dan has to clean the bathroom counter and wash the mirror everytime and everywhere we go... as i blogged in the past we have left some very clean public bathrooms.... in our ritual wake... even in NY ... where i lost a shoe , i was so busy with dan i lost one of the shoes i had just purchased from a shopping bag... dont have any idea how, but it was gone later when i looked for it and the bathroom was the only stopping place.... one never knows as a female in a mens bathroom what is gonna be encountered... mostly just a odd look, sometimes a helping hand, and one time a commendation.. a guy had been severley hurt for sometime and his wife had to help him in and out of the mens room and so as i was helping dan one time a guy said.. that is the most beautiful thing you are doing and then told me for a year his wife had done the same when he was injured... this from a burley tatoo'ed guy who was maybe 30 yrs old.... although once i had taken dan into the bathroom and left him there ( it can be awhile sometimes) for a few moments as i had left my purse behind... and returned to the bathroom.. i always announce myself and some guy was like hold it hold it... so i stepped back out and waited till he came out .. he went directly to a waiter and "reported me" ... the waiter told me about it later.... the waiter said i just told him you were co assisting your husband and it was like the dude still didnt get it... this was at a local resturant that when i can get dan to go , dan prefers.. and they treat us pretty good... many times dan just walks in and sits at a table although there is a long line of people waiting their turn... but i have slowly been trying to resocialize himself .. and found if we sit at the bar we actually get better service and the stools and leg space that once i can get dan hoisted into the stool is better than the booths... ......... but right now dan is still not eating hardly anything, but of course it is the liquids that is concerning me... maybe at most he is getting 8 ounces a day... but today he did eat 2 bites of french toast and one bite of ham........ and in the evening he ate like 3 tblsp of hashbrowns and one bite of ham..... i wish i knew what is going on in his head.... i/we have talked , bribed, conjoled, yelled, begged nothing .. but he is very cognizant again where his strength is coming from i have no idea.... today he was very involved in talking in numbers and looking at maps on the ipad with bethanys boyfriend ( now he was one patient kid) 3 hours this went on in aphasia talk.. but the kid just kept working with dan.... one time dan was holding a pen as he would occasionally write a number down, and he started to write on the wall... he noticed and said oh SH.T and tried to rub it off.... many times dan speaks in numbers --wish i could break the code--- and he will use his finger on the wall next to him in the chair to write in the "air" ... and even when he makes a mistake ( in his own mind) he will rub it out like the number he wrote in the air is real... so he rubs out the number and starts over.. kinda like a math teacher... the number talk shouldnt suprise me... dan in his job as shipping manager knew all the invoice numbers and many times co workers would call him and ask for a number because he was faster than a computer at the recall of the number... LOL and phone numbers he used to know and remember everyones.. it was almost photographic in memory for him..... i cant keep numbers straight to save my soul.... he often said if had been allowed to go to college he would have went to be a math teacher... but a hard working son is a commodity on a farm, so his parents convinced him not to go... but he loved working with animals, picked up on their mannerisims fast and just had a way with them.. and he loved physical hard work.... even today, when he is of "right mind" he loves it when the PT puts him through the wringer and pushes him... dan will come out exhausted ,shake the PT's hand and say thank you very much... but right now he is not in that mind set..... i swear it feels like i have several husbands, some i like some i don't ,, but I LOVE all of them... he feels so close and yet so far away... but once in awhile you get that connection a memory you both recall or something you both notice at the same time and even with out words we connect... usually just brief, but enough to know my husband is in there... the loss of the ability to communicate is so very difficult... and frustrating. i wish i knew what 202- dot- 313 means... or seven eight six -point- three two four means ... sometimes it means there is a door open ( he cant stand a door ajar, it has to be open all the way or closed) or he wants a coke... ( although latley he definatley isent asking for a coke) .... and promises , he makes them and breaks them from one minuet to the next and he really sometimes forgets he just made and shook on a "deal"... today he did ask me why i limp when i get up.. i limp for about six or seven steps before i walk out that fluid behind my knee pain... one of those things... just gotta live with.... just some more theraputic midnight blogging ..... LOL or CRY OUT LOUD ( COL) but i guess i just (BOSN) blog on stroke net.....


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One of Mum's friends at the Dementia Lodge used to count to ten, over and over and measure cloth lengths with her hand. She had started work in a clothing factory so it was put down as regression back to her early working life. Dan's sounds like a return to work. My supervisor often called out invoice numbers when I worked in the motor industry, my first job out of school. When Mum scored 2 out of 35 in the MMSI test it was a work related guesture that got her the points.


Nancy your patience astounds me. I honestly don't know how you do it, day in day out. You must have the patience of a saint. I know I would be unable to do that. The mental stress must be very high. Take care of yourself my friend.


(((hugs))) from Sue.

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Nanch has the patience of a saint for sure. Ray too talks in numbers....well he asks for a pad and writes them, but they don't add up to anything real. However, the fact that he is trying to communicate means everything in the world to me.


And I am so tired of living in fear of Adult Protective Services, let them try to live our life for just 24 hours. I doubt we're the ones they're looking for, but still. The psychiatrist we're seeing now always asks Ray in the first five minutes, right in front of me, are you afraid of your wife? Does she hurt you? I love seeing him smile and laugh, like, this must be a joke, right? Talk about 100 ways to say I love you!

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colleen i have never had anyone do that, to me or to dan, ask that question... i know it is protocol now , but wow... mind blowing............ since i dealt one on one with protective services and social services when trying in the early days to get care for dan ,, they didnt know what to do for us, him, or me... and the nursing home call i talked to said if dan were to ever be placed in a nursing home it would be in the special care unit, doors locked with a very small staff to patient ratio costing roughly 400.00 per day or more.......so yes protective services what would you do with dan or with ray... what would you do??? i know , absolutely nothing....

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oh here i go again... i often have wondered why me why this why dan.. from a spiritual standpoint.. the bettering of the spirit not the poor me type.. and sue and colleen with your acknowleging of my patience , i brings it back to mind... now i am gonna go a little left field here people dont get alarmed... but i sort believe in reincarnation not like gonna come back as a rabbit type.. but the type that their are old souls and new souls... and we are all on a destination of sorts to become the best person you can be.. improving our souls..... so for example loose.. a attractive person might comeback as a person who is not attractive in this life... loose explanation.... very Edgar Cayce-- i know.... but i feel like one lesson this stroke has taught me is routine, i hate routine... always have... never worked anywhere that was routine...every day at a jail is different .. structured absolutely but not routine.. the human factor wipes that out... now with dans stroke routine is absolute for the most part.. and Dan was the polar opposite of me in terms of routine.. he thrived on it and found it very difficult to be without it... and he was always busy ( still is) his leg still bounces with the energy of should be doing something ... but the stroke forces him to slow down.... so i sorta feel this undeveloped spiritual aspect of the stroke as a learning experience from a higher power... or at least that is a coping mechanism i have to get through the day.... more brilliance from nancy or comic relief.. who knows ? i don't... smiles

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Well since your birthday is coming up, I realize now that you are a Pisces. And that is the oldest soul in the astrological calender. Coincidence? I think not!

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Whether we learn it thru many lives, or just this one, I do think those who have one life that never changes, never learn anything more. Bob used to be a very important man in his job, and emails still come to his address, of those trying to contact him, internationally. He has definitely had to learn 'humble', a very hard lesson.

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ps - it is hard to stop at eating.... I mean, if you haven't been eating and don't want anything, it's rather like smoking. One cigarette and you are addicted again. Usually, after not eating, then taking a few bites, the juices all spring into your stomach and you become ravenous. Hoping it hits Dan, soon!

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wow Nancy, you are a book reader and what you write here is like reading a book page for me. I have to use my folded sheet of paper against the computer screen and go line by line or I get lost in what you are saying or telling.


I can go with paragraphs or about 7 lines of writing otherwise I must use a book marker or something to separate it into paragraphs. I know it's the stroke I don't think I got any dumber I just act like it my wife says.


I have to try again to read what you wrote so I can comment, OK! I use a bench not in the shower because the tub is a garden style and I can sit on the edges if I need to sit. I shave too one hand in the mirror and it looks OK to me. But I got 9 years and Dan just got 2 so he is doing great in my mind.


At 2 years of recovery I was still in a WC not walking at all and eating supplements like crazy to get my brain back, that didn't work it's still gone fishing. Then in my mind Dan had a bigger hit from the stroke so his recovery will be awhile longer. Tell him I say he's doing great and I hope to see you two this year soon in Texas.

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Nancy: Patience was never a virtue of mine - LOL. Getting better of course. But I was completely organized and also lived to routine, so obviously I had a step up when Stroke arrived. And like Dan now, Bruce does best with routine. But like you, prestroke Bruce was also a free spirit. Funny how stroke spins us around.


I have no words of advice, but I did want to share that Bruce was also a numbers guy. But in order for him to figure out how much a product would cost, it was imperative that he figure out how it would print and then fold. And I noticed little folded papers and numbers on another piece of paper - keep in mind Bruce is working left-handed and the fact that he could even do that so early on was an indication of just how much his job meant to him. I was fortunate in that our dear Carl and Bruce's boss-friend understood what he was doing. I did have some back ground in Graphic Arts, but it was a long time ago and I was dealing with a whole bunch of other stuff. Their take on this, Nancy, was not that it was communication so much as finding a safe place where Bruce could make some sense of what just happened and centering onto the familiar, the safe.


Both of these guys understand exactly what Bruce is doing, Bruce taught both of them. Plus they have all been together 20+ years.


I want you to put something on the back burner - get through this crisis. I know it is day to day and at this point, probably hour to hour. So hopefully with Spring arriving and the new access to the patio finally a plan - fresh air and sunshine works wonders. Nancy, consider telling him the garage is a mess and he needs to get out there. You are keeping it for him, make it work for you. Consider a young, hot Speech Therapist. You have read of Bruce's success. Dan is connecting his numbers to communication, because that is where he is safe. That is known territory and it will protect him. And yes, I understand that 202 dot 313 is used for a lot of things - today it is a Coke, tomorrow it could be I have to go to the bathroom. That thinking has to be rerouted. Dan, 202 dot 313 - where is it located, what does it do for you, what color is it, is it living (the dogs). In working with Speech, his mind will eventually (took Bruce two years) take 202 dot 313, run it through the options itself and at least give you some direction as to what he is thinking. 202 dot 313 is the word he knows and is safe with. What he needs to learn is how to translate that so at least he can get you in the right direction.


I no longer accept pointing to the door to let me know the mail has arrived, or touching his coffee cup for a refill. But I have to insist on forward progress and working toward recovery and Bruce is at 4 years post. Right now, that is fine for both you and Dan. Just a thought. Debbie

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