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asleep, a lot



dans nuero has increased his lamictal, just by a little to hopefully eliminate the seizures.... i dont know that i wrote about it but he had another.... any how the small titration seems to have really put him to sleep.... he went to bed friday night and basically slept till sunday morning... used the bathroom once , but otherwise stayed in bed, thank goodness for briefs.... he got up this morning took a shower but asked for his shower chair, sat up and watched dantes peak and then went back to bed, although he only napped off and on... but he seems more confused than normal.. so tomorrow i am hopefully gonna be able to get him to the doc or something, maybe a UTI ?? no reason for one, but in stroke world who knows... or his lamictal could be to high now, with the deletion of the dilantin?? more who knows?? or maybe tomorrow he will wake up and feel better and it was a passing bug.... called and talked to dans mom she has been calling wondering about dan, and she is about the only one who on occassion does call ... felt i better get back to her... she doesent grasp the all encompassing of dans care... how a shower alone is almost 2 hours, and bundeling up in ND in the winter takes time, and just hanging out in the bathroom while dan is useing it can take about 1/2 hour , depending.... and it can be 5 to 6 times a day... and then the laundry , the never ending bedding changes and wash clothes ... i am not complaining it is what it is, and in this case its a window or a blog into my and dans little piece of the stroke world .....


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If they changed his meds, that's probably it... maybe still needs tweeking. I hope it is something easily solved, we've all had such a hard time lately. We about how long all that stuff takes... it's good to be around people who know, I hate people making smart alec comments to me like, "oh, don't give me that, you have spare time!" - yea, if I can still stand up, or maybe it is time for my once a week shower... I could skip it to accomodate the bone head who just said that...or burn a hole in his head with my eyes...

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Nancy, I could almost guarantee you that the change in sleeping habits is due to the meds. That was the reason we gradually weaned Gary off all his meds except for the 50 mg of the antidepressant, which he will most likely need forever. In Dan's case, if he's having seizures, he definitely needs to be on an anti-seizure med, but maybe a lower dosage. Gary's doctors had him on an anti-seizure med while he was in rehab because some idiot at the ER wrote on an intake sheet that his passing out at home that morning could have possibly been a seizure.....although he had never had a seizure in his life.....turned out it was a TIA, but they were still playing guessing games at that point. They even had him on two blood thinners, and then wondered why he ended up having a bleed three weeks later, said they couldn't control the blood thinners, so took him off altogether. Sometimes it's a lot of trial and error on their part.


And, for the record, nobody will ever understand what you go through as a caregiver until they have walked in your shoes. I've had people watch Gary for a day or two or three and think it's not that hard, but try doing it day in and day out for nine years without many breaks, and it's a whole different story! I've had family members make light of the fact that I can't push him uphill in a wheelchair, like it's an easy thing to do with 220 lb. of dead weight. They can do it one time, or maybe two times, but try doing it every day, and then tell me it's easy! NOT!! You get the picture?!?



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Nancy: as always Dan and Ray are in sync. He too just got switched on the antiseizures; as most of you already know, not slowly just one right to the other with no overlap. Not fun. Then I couldn't get the real depakote so he is on generic, although the good stuff is finally approved by Part D, just have to get the doc to call it in again. He's sort of washed his hands of Ray though after all his antics at the hospital, so I might have to have someone else do it. Oh well was hoping to get some things of my own done today but that's looking unlikely.


I wish Ray would be like Dan and sleep with his new meds though, instead he is having seizures without becoming unconscious (they say it can't be done, but believe me!) anyway he kept me up all night wailing and scared. Hope today Dan wakes up and wants to go out somewhere, how's your weather?


And this is another great topic, caregiving trials and tribulations, I had just joked with Nancy that we should start a thread titled "You know you're a caregiver when..." like Jeff Foxworthy.

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Maybe Dan needed the extra sleep and the med increased he got? I hope things will level out for his actions he has displayed in recent months. I don't think a survivor can get too much rest or sleep. Well, I can't for sure, I can sit at the computer and go to sleep. Must be the pain pills?

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The anti-seizure meds do increase sleepiness, especially at the beginning. It should even out once his body gets used to the increased dose. Not a bad thing to check out other possible culprits but it is probably the med increase. We've increased Lauren's Keppra once and he was quite sleepy for a couple of weeks. It wasn't to the level of Friday night to Sunday morning, though! But Dan seems to do things in a big way, right? :) ~~Donna

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dan now has decided again he wants to die, now he refuses to get out of bed, lies awake, wont talk, the speech gal came to our house ( love her) since he wouldnt go to the hospital... and we are at the juncture of decision making again... he is actively willing himself to die, no eat, no drink and as of this morning no meds... i think he is having his own spiritual crisis with god... says in 10 days he will eat, ( meaning all) but it will be long before then and he will need to return to the hospital and that tube will be back in.... here is the juncture ----- again, but i have learned from past mistakes and now when placed it will stay in .... since it is obviously a control issue and i'm not gonna let him just die, like he begs of me.... i really hate always only having so much bad to report ( or sad) dan has come far, but with the stroke damage his thinking is so far off he cant rationalize..here we go again ...nancyl

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Nancy, you are such a strong person. All of you that are caregivers to your spouses are. I cannot imagine how you have done it day after day. I only lived with mom for 5 months after her stroke and felt like I was a zombie.I guess there's not really much you can do when Dan decides to give up. Mom has done the same thing a couple of times. I used to try to get her to "snap out of it", but now I realize that's a waste of time. I just listen and keep on doing what I'm doing. It's their decision and with stroke thinking we all know they are not thinking correctly. Saying prayers for all.

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