Mike Day 19 Moving Forward: Are You Kidding Me?

June 15, 2011

Family, Health, Mike

Who would have known that the guy I’m married to for 31 years now, who cannot recall our marriage, who often doesn’t recall momentous events in our joint lives or his own life, who cannot remember his sister who died 30 years ago, who cannot remember five minutes after lunch that he had lunch and had been given the eggs and bacon (lo sodium, lo fat etc) that he requested, who must be reminded 1100 times a day that I love him …who would ever believe that a guy with this much memory impairment could walk into the bathroom, inspect the contents of the trash can and point out (in an extremely annoyed state) that it contained plastic objects that did not belong in the garbage. Rather, they belonged in the recycling.  And I ask you.  Rhetorically of course.  Why did he feel compelled to examine the contents of the trash can in the first place???  Are you kidding me???  Welcome to my world.  No amount of explanation that we have always kept the plastic in the little garbage can until trash night since there is so little of it would convince him this was appropriate or correct.  I found myself sorting out the garbage can and hiking to the recycling bin.  Note to self.  Buy a little recycling can for the bathroom.  Make that a matched pair of cans.  He broke the lid on the little garbage can while he was examining the contents of it.    

To that memory end, I’ve grown frustrated with the lack of progress there.  I know that there is progress to be made and I know that the time clock is ticking.  With brain injuries the majority of the gain, I’ve read, is made in the first six months.  Unfortunately, the rehab program apparently doesn’t have sufficient speech therapy staff to meet all their needs so Mike’s only getting one day a week of speech and cognitive therapy.  Naturally we work with him at home.  He doesn’t love this approach.  He would rather that we not bother him with such things.  I’ve been wracking my little brain to come up with ideas. 

Here’s what I think.  First, he is fascinated to watch the kids play video games.  Positively transfixed.  I read somewhere recently that video games helps to improve some cognitive function…working memory being one…so I think I’m going to have Cameron teach Mike to play his video games with him.  Mike loves war stuff…Cameron loves violent war games (as long as they have a story line he tells me.  HELLO!).  Cameron masters these games in a matter of a couple hours.  Cameron is learning disabled and had huge memory deficits…which have improved vastly.  To me, this is a match made in heaven.  Mike will be PS3ing it regularly.  Next, I’ve just ordered up the Nintendo DSiXL…and a truckload full of brain stimulating apps.  Well, I threw in a fishing app and a Cabela’s Hunter app…but mostly brain stuff.  Instead of wanting to sleep afternoons he can do this.   Now I’m on a quest to find similar apps for iPad.  We already have an iPad. 

Next on my list of “WHO KNEWS???” is how difficult change is for my husband. I mean he never really embraced change before he got sick but now his reaction to change is ridiculous.  Yet one I must adapt to and avoid henceforth.  Yesterday I had the brilliant idea to move the bedroom around.  Now understand that this was not a move because I was bored with the current layout.  This was because he lays on his back to watch tv.  He needs to lay on his side.  Due to the former location of the bed, he was on his back too much.  Figuring it would force him to lay on his side and take pressure off his bedsore (which he doesn’t remember he has from minute to minute), yesterday, while he was at therapy, we moved the bed 90 degrees.  What a going on when he got home.  He wanted my side of the bed now…my side only because the area where you get out of the bed is rather cramped and has obstacles…not enough leg swing room either.  He could not find the bathroom entrance easily any longer.  He pointed out that “the opportunity of access point isssss”…..and then some mumbled gibberish.   He paced around muttering like Rain Man.  Only taller.  Than Dustin Hoffman I mean, since Dustin Hoffman is pretty darned short and Mike is slightly over 6’4” tall.  Otherwise, there are distinct similarities now. To the Rain Man character I mean, not Dustin Hoffman.  

Anyway.   As a result of this traumatic moving of the bed, sleeping was not a happening thing until 5:30 this morning.  Somehow he got the dogs scared away from the bed (whatever he did, he did it while I dozed.  I’d like to know.  I’d do it regularly.  The two of them in the bed is a real nuisance.)    I awoke to having the sheet wrapped around my head at one point.  When I asked what this was all about, he told me “your schrock”.  I was like what???  What??? He kept repeating it.  Finally I figured it out.  Translation?  “You have morning breath Robin.  It’s from the coffee you swilled down while I was pacing.  I want to cover your face up so I don’t smell it. ”   I was like,” are you kidding me?  You don’t like my breath, too bad.  ROLL OVER!  You are not wrapping my head and face in the sheet.”  (did I mention I am claustrophobic?  Two of us acting like Rain Man would be disastrous…) 

At one point I awoke to find him pulling at his brief…next step would be tearing it up in little bits and gel stuff and paper all over the place.  Recalling the mess of the other day when I didn’t wake up to intervene and prevent puffing the diaper, and my subsequent annoyance, I gave this my full attention.  I was like “are you wet?”  Mike, “not yet.”  Me, “Must you pee?” Mike, “yes”.  Me, “Well, what prevents you from going?  Get outta the bed and go the bathroom and pee!”  Mike, “Oh.  OK.”  Me, ” Do you need help?” Mike, “no” as he returned to bed fidgeted with the sheet some more.  Me, “Do you want a sleeping pill?”  Mike, “No.   You’re crazy.”  Me, “Yes, I guess so.  Maybe I should take one.”

Another time last night I grew chilly.  I pulled a quilt from the bottom of the bed to cover with…since the sheet was wrapped entirely around my husband as he fidgeted and twisted it and tried to render it in two.  He apparently wanted quilt too so I covered him.  Soon I felt the quilt being unceremoniously yanked off me.   Now we had words about sharing, consideration, and a lack of sanity.  As in “Mike, you’re acting nuts.  This has got to stop now.  Cut this crap out now and go to sleep.  You’ve got wound care at 10:45 and therapy all afternoon.  You’ll be up early.  You’ll be cranky.  This is nuts.  Go to sleep.”  Mike’s response.  “You’re crazy.  I’m not nuts.  You’re crazy.”  Sigh.  As he doubled the quilt over himself.  Worrying that perhaps he spiked a temp as a result of some unknown infection in the bedsore from repeatedly taking the dressing off in his sleep I was now up and about finding the thermometer in the dark to take his temp…which was perfectly normally. Me, “Mike, are you cold?”  Mike, “No”.  Me, “Mike, won’t you be too hot with the quilt doubled up over you?”  Mike, “Yes.”  Me, “Well then Mike, open it up!”.  Mike responded by taking it off altogether.  Finally, at 5:40 when I gave up the ghost of trying to sleep and got up out of bed, he went blissfully off to sleep.  Well, enjoy it sweetie.  It’s short lived.  You’re up and in the shower very, very shortly.  Your day is about to begin.  

 Note to self.  Change is not a good thing.  For any of us.

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2 Comments on “Mike Day 19 Moving Forward: Are You Kidding Me?”

  1. Beckie Says:

    Dear, Lord, give her patience. She deserves all the jewels in her crown.


    • rsmallen Says:

      Thanks Beckie! I am convinced that is my lesson to learn in all of this….patience. Patience, Patience, Patience. I’m learning. It’s hard. My mom tried to instill it in me for years…unsuccessfully. Now, I either learn it or have a lot of unhappy times. I’m learning.


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