Off the Dilantin and sharper
Well Dan is fully titrated off the Dilantin...and by golly he is " sharper" then I would have expected! In such a short duration...while he is absolutely not fixed ( don't we wish) ..he is more aware and constantly asking questions.. But he speaks in numbers a lot...he doesn't realize he does this and it can be a mixture of numbers and letters.. A three in his mind looks like a E so that gets thrown in a lot..I also had to make two trips to Fargo no particular reason other than he wanted to..and he spelled Fargo, so even though I like most the rest of the world have the slight flu bug went...I think it was worth his freedom to sacrifice some of my time... ...I have taxes I should have worked on... We also made a trip to the casino.. I really din not want to go and it started as our daughter April wanted to spend some time alone with Dan and give me a break.... Backfire !!!! Nope he wanted to go to the casino and I had to go to... I am his safety net... I always have what he needs and can anticipate.. He must can't give up that control.... Now he is ok at home with someone from the family to be here with him for a short duration... And he usually makes me commit to a time frame... Which just deciphering the time frame can be fun... He will say something like, 75 point 45. And as near as I can tell it means 45 minutes ..... Not much can be accomplished in 45 minutes.... And sometimes he gets upset if I am not Johnny on the spot and other times he could care less..there is one person outside of the family who can sit with Dan ..thank goodness, my daughter Erika,s ex boyfriend ..... He grew up more or less around us, during those teenager years and I had a brutal honest relationship with him just as Dan did....so even though their (Erika and michael)relationship is long over they are still like brother and sister and he is like a kid of ours.... He shows up pretty much daily, slides open the patio door and says what's up old man.... And this part. No one else except our own sun can pull off with Dan... I asked michael if he could stay with Dan so I could run to walmart, sure Michael says.. He plunks down on the recliner next to Dan takes the remote control from Dan and said, well just you and me old man, and we ain't watching this sh-t... He turned the channel to a show that was appropriate for both.... Dan pretty much just channel surfs
( sound familiar anyone) ... Dan doesn't seem to be as tired and is getting up a little earlier..which I love but those early morning hours are the onlyme time I get... Ying and yang.... But I if given the choice would of course choose him getting up early....working on lots of fin an ial stuff, with the sale of the house ..which did not make us rich...lol but am trying make the most of paying off my obligations to the areas that need to be taken care of....thank goodness for my FSL or none of dans improvements would be happening... The move here to town has been instrumental in dans recovery... Mostly the wide open layout is the single most helpful aspect ..... So I write this letter with much enthusiasm, but one day at a time, Dan still plays games with not eating and drinking. But I have been able to break up the mixed thought process that goes on when he makes these decisions..and the stomach tube was just to invasive, and was a real hinderance to physical recovery..... Ying and yang again...he believes not eating will keep him from gaining weight( never mind how weak you get) and not drinking keeps him from needing to use the bathroom and waking up wet ( which devastates his manhood) .... Everyday is a balancing act, like a life recipe.. If all the ingredients are not just right in the right amounts the day/ week will be a total flop..... My biggest worry is the same all we caregivers have, what about us, our health, what happens if we can no longer be there.... And although Dan has come far ( death and vegative state being his initial prognosis) he is still a nursing home level of care individual ( easily) ...and for the kids to spent their life strapped with the level of care Dan requires is to much....on another note Dan spent his whole life working, we never even had a honeymoon, we did a few very thrifty family vacations but we worked hard two jobs each for years to provide and make the attempt to get ahead... And that is only reason we are not in medical bankruptcy.... Cause in the beginning nobody wanted to pay for Dan, he had been insured by bc/ bs his entire life...and man when I got a one hundred and three thousand dollar bill in the mail I almost had a heart attack.... All those phone calls we had to make ( bet this sounds familiar)? Soc sec, spending down, blah, blah and blah....the road is long hard and bumpy!!!! I am not dishearted just a little tired of the fight and the balancing act, but am appreciative of the fact I have a balancing act to do... Most people don't survive a stroke like dans ( that's why the devastating prognosis) so the fact I have battles to fight I am thankful for, but a little tired... My little sis is moving up from CO in part because the economy is so bad there but also , she senses I am getting tired .. And her being my sister is willing to change out her life plans to come and help me... Even the " vacation" we had to NY and the cruise was. Very labor intensive for both sting and myself..... We enjoyed it but it was not the same as a vacation... I mean it takes at least one and a half hours just to get Dan up and showered in the AM.. Means doing much before noon is difficult.. On the entire cruise I don't think we ever got out of our room before noon.. Except for day one were we got very disorientated.... And Colleen and ray same thing, we never really could get out of the house before noon.... Lots to do and organize... And just try to
Push a OCD stroke victim to move faster, thats a disaster and the entire day will be cancelled...and Dan the OCD man and bathrooms and restaurants tables and the cleaning ritual,,remember when I wrote about the NY bathrooms I have cleaned, it's either him or me cleaning that toilet.. And although he is very clean, if something needs a little liquid to be scrubbed well it will be his sliva, which is ok till you do it twice on the same napkin.....so I am always trying to be ahead of him... But on somedays he can move quicker than me....just my little blog thoughts again I am happy to be able to blog and at least have these issues, no issues no Dan, I choose Dan.......nancyl
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