A day of my life

 I'm going to keep track of a typical day of my life. It will give you some idea of what it is like to be me. I will spare you from the times, when I feel an itch or some random pain, as I do with my caretakers. I feel itches all the time, and I have learned to ignore them. I just focus on something else. 

2: 37 - I wake to the sound of the dog barking I don't stay awake long. The last I remember thinking, is I hope we don't have a possum or coon, visiting the chicken coop. 

5: 49 - My glasses have fallen off. Everything is blurry. I can squint and make out the time. I think to myself that light will soon illuminate the room. Too early for Jonell to be up yet, but soon. I'm still tired, I close my eyes and drift off once again. 7: 28 - I wake up. Jonell is already up. She notices me awake, hey 60% and turns on the news. Lydia walks into the room, apparently, already up too. She walks over to me and takes my glasses from my chest, and puts them on my eyes. My wife walks over and kisses me and tells me good morning. I blink, in a manner that indicates I need my eyes wiped, and she gets a warm Washcloth. She removes my glasses, wipes my eyes, then replaces my glasses, to their rightful position. 

7: 39 - All this time, Lydia has been crushing up my medication for my morning concoction, and she starts giving it to me through my feeding tube. She also begins my feeding for the day. I am fed my liquid diet, through an IV bag system, hooked up to a special machine, that regulates the amount I get per hour. 

8: 35 - Jonell checks and fills the water in my humidifier. 

9:  34 -Jonell put my head up for me, so I could sit up. 

10: 19 - Lydia adjusted my glasses for me. 

11: 18 - My nurse, Mary, made her Friday visit. My blood pressure was 103/68 and my pulse was 72. Oxygen saturation was 98. 

12: 08 - PT by Jonell and Lydia. 

12: 24 - given a dose of Baclofen, by Lydia, per my request. Tailbone starting to really hurt. Pain so severe it is causing me to cry. 

12: 36 - Lydia adjusted my hips. 

12: 38 - Lydia put my boots on. 

1: 24 - Heaven, our household aid, returned from her weekly grocery run. Every Friday, she runs into town for my wife, to pick up food and supplies for us. 

2: 21 - Suctioned by Lydia. 

3: 16 - Glasses adjusted by Heaven. 

3: 57 - Glasses adjusted by Heaven. 

4: 27 - Glasses adjusted by Lydia 

4: 41 - Head back by Lydia. 

5: 31 - Baclofen by Lydia. 

6: 22 - Glasses by Lydia. 

6: 34 - Fan on me by Jonell. 

7: 20 - Suction by Lydia. 

7: 24 - Cleaned up by Jonell and Lydia. I'll spare you the details, just know that it's a shitty job... Literally! 

8: 01- Suction by Lydia. 

9: 05 - Nighttime meds by Lydia. 

9: 38 - Final Suction by Lydia 

9: 43 - Nighttime medications by Jonell 

So there you have it. A little later than most nights. But it shows how three people team up, to provide my care. I may have left a few things out. And I didn't include things like, fielding phone calls on my behalf, emptying my catheter, or filling my humidifier. Those things happen behind the scenes, and need to be tended to daily. There is also the occasional visitor, that drops by, whether planned or spontaneously. All these things need to be dealt with, and take time. There's also cleaning and dusting, laundry, dishes and a whole host of other things. All combine for a long day.

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