Things are looking up!

I got a great night of sleep.  Made my way to the hospital much later than the day before as the hospital does a briefing at 7am and they prefer to have the halls quiet during that hour.  I respect that.  The staff there was incredible to us! They were compassionate and informative.  Jean was already awake and looked so great!  Still tubed up but nurses said they were hoping to take it out and see how he responds.  They seemed confident and that scary feeling of two options, neither of which were ideal, didn’t seem to play into things as they did just 30 hours before.  

I missed the untubing and walked in on him coughing and wiping his mouth.  The nurses were impressed with him, not only how he handled this but everything leading to it!  Many who had attended to him over the past few days came in to check on him, amazed he was alert and without a tube!  His voice was so funny when they removed it.  Branden was with me and we laughed at how different he sounded.  Like a radio announcer!  I recorded it like I have everything else!  Even without a shower, that after photo was perfection to me!!

So not only had he woken up, he was alive .. like the guy I knew a few months before his diagnosis!  I noticed he still asked me the same questions over and over (still does to this day, and I answer as if it’s the first time).  He was ready for food and had an appetite like he hadn’t had in months. Requesting fast food favorites and asking when the next meal was - he was barely eating at all before (except the two burritos he had for breakfast at 8am followed by a protein shake).  He still has those 8am burritos and you can almost set your clock by it!  

He always had a routine…towel/washcloth over the shower rod before bed to prepare for first thing next morning, toothbrush, hairbrush, deodorant all placed out on the bathroom counter.  Before all this shit happened he had other routines - he woke for work at 5:45 and continued that on weekends.  His coffee cup was prepared the night before, including shaking his sugar packets and leaning them upright on the Kuerig.  He didn’t like change much but most things he would roll with…like when I rearranged furniture.  He’s definitely got some things he’s OCD about.  

We spent the next few days in the hospital as they would t release him without a bipap machine established at home.  It has been his lifeline, pushing the oxygen and pulling the carbon dioxide out of his lungs.  He knew he needed it - the politics of getting it were not so simple.  One company required a sleep study and we didn’t have the ability to wait for that to be scheduled, he needed it every night.  So we started the process with another company that didn’t require a sleep study, they went by his diagnosis.  Weds morning, one week after presenting there, he was discharged home and walked out of the ICU on his own.  

A nice man came to the house later that day and got him all situated with a very different mask than the one he used at the hospital.  He seemed happy with his choices and grateful they weren’t covering his face.  The machine is so bright - buttons flicking and the screen on the front is crazy bright I was telling Jean.  He offered to cover it with a towel for me..this photo makes me giggle…he tried!!!

Every day we are together I am so grateful.  He is my best friend and I can’t imagine life without him by my side.  We talk about things but he has not got many opinions on things, nor does he have emotions around what happened.  I think that’s been the hardest thing for me, no emotions, no reactions, watching me cry and not matching that energy.  Before we knew what was wrong I was so hurt he wasn’t reacting like normal and then the diagnosis came and I educated myself on “frontal lobe dementia” it made me more understanding and patient.  He wasn’t trying to piss me off, that part of his brain wasn’t firing anymore….but I know he loves me, he tells me when I look in his direction and our eyes connect and he winks at me after sitting in silence …or if he’s across the room from me!  His little smirk and kind wink are for me…no words needed!  

I don’t cry as much anymore.  He’s doing amazing with the bipap keeping him sleeping a good 7 hours each night and eating so much better.  I don’t worry as much.  He enjoys a plate full of food, does the breathing exercises the pulmonary nurse sent him home with and purposely paces the house every 45 minutes or so.  He is clear in his speech, thoughts and when I ask if he likes hanging with me on weekdays, he agrees it’s time well spent.  We don’t fight..never have.  We often disagree but always come to a resolve without any disturbance.  We don’t name call or crap on each other.  We mutually respect the other and I am so incredibly grateful to have been by his side for 30+ years.  

~kel~