Recap the last few weeks...

I don't re-read my previous blog posts so I apologize if I'm ever repeating myself.  I talk to lots of folks who ask how we are doing and I forget who I told what so just scan with your eyes.....blah blah blah!

These last few weeks have been about the same for Jean.  I notice he repeats his questions more...and gosh he really gets into the headlines!   You need news info, he's probably your guy because he gets excited over it all and sitting here a good part of the day watching TV he's well informed!  His routine is so grounded its comical.  Wanna run into him?  Go to Lyman Dunkin Donuts around 8:00am....or Alfred Aroma Joes in the 2:00 hour!  He loves little errands and just getting out for drives (he is usually running my errands or chasing down a marketplace find for me!)  I feel so grateful he's so with it!  

Last week he had a pulmonology workup at the hospital.  I told him several times it was a longer appointment but he wanted to wait to eat his breakfast after (I think he was hoping I would suggest breakfast out but he was ready for home after the testing).  They called his name, we both stood up, the nice man told us that only Jean was to go back with him and I would have to wait in the waiting room and they would only be an hour or so.  Jean loudly said "AN HOUR!?"  I laughed and so did a good part of the waiting room.  I don't like it when I can't go in because…Jean LIES!  Everything with him is great, he feels great, doesn't think he has anything wrong, doesn't feel any pain, sleeps great and though most all of this is how it is, there are sometimes questions he always answers in the affirmative and I have to chime in with the "well, actually".  We got the results with a note from the doc that the ALS has made him weaker.  He still works so hard walking on the treadmill daily and doing his exercise tests they gave him in the hospital.  He does them every 30 minutes if he's just sitting in the chair!  The advice we get is just keep on going until his body tells him he can't.  His legs don't seem to have the weakness as much as his upper body and his chest especially!  It looks painful to watch him breathe just sitting in the chair...big pulses of the chest, like its difficult but he doesn't seem to notice at all!  That's where I think the dementia is a blessing!  

When asked what Jean thinks of his diagnosis or test results like this, I tell them I read it verbatim from the doctor and he usually just looks at me blankly, no comments or anything so I wrap it up with "So your walking and breathing exercises are perfect and you need to keep doing them!"  He happily replies "Okay!" and walks away.  I am so so lucky he's a happy person with no nasty disposition tendencies.  I have read some incredibly sad stories and I am sure the nurses in my life will validate the shitstorm that dementia has the potential to create.  Fingers crossed we stay in happyville! 

 Todays errand photo…

My Wednesday night tv lineup has begun - I love those Chicago stories!  I’m off to enjoy a little me-time.  

Thanks for all the calls/texts and food sent our way!!  The girls are so amazing at planning our dinners but it is nice to see them get a night off!!  

Enjoy!
~kel~




Comments

Post a Comment

Popular posts from this blog

Things are looking up!

Image
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...
Read more

He woke up!

Image
I’ve read that intubation was the final step for ALS patients so I was incredibly sad.  This all happened so fast and though we had conversations about what to do if this happens I wasn’t prepared.  I texted the update to JoJo and my mom. I made the hard call to Branden telling him to wake his siblings and tell them I needed them with me.  He was calm and collected like always and said he would gather them and come to the 4th floor.   Seemed like they were all there within minutes. We were only allowed in Jeans room by twos.  Taking shifts to and from the waiting room throughout the day.  So many friends stopped by I needed them and they were there!  JoJo stayed in the waiting room all day! It was one of the saddest days of my life.  The kids and I went home that night as the hospital suggested I had been up all night and they didn’t have a great solution to offer me.  We cried, I showered, we cried some more. My gut was turning at the though...
Read more

Our FTD/ALS story - long post!

Image
I’ve been sitting on this idea of blogging for some time now.  I can’t find another family going through this so I’m putting my thoughts down hoping it helps someone.  I am sure some will think I’m oversharing but it’s my attempt to keep those who want the updates informed and stop any potential negative chat about my family.   I'm Kelly,  a portrait photographer in Southern Maine.  Mom to four of the best kids a mom could ask to raise!  Wife to the love of my life (after I wore him down and convinced him I was a good catch!)  We are just a family of grownups now coming together to spend quality time loving up on my awesome hubby a/k/a Jean/Dad.  For quite some time now Jeans been changing into someone I was struggling to recognize.  He would drink more heavily than normal and other personality changes would happen.  Hard to describe but there were times I would feel ignored, jealous, embarrassed and lost because in our 30 years of marri...
Read more