Sunday, April 10, 2011

The reality of Dad's situation...

Saturday's have started to totally blend with every other day of the week.  Much time spent at 180 E. State with Dad happens just like every other day, so I was there for most of the day yesterday and I actually had a sleepover with Dad last night so that Anne could go to dinner and to see a favorite band with some friends and then get some sleep!  I'm glad she got to go out and have fun and a break.

We were watching some Monk episodes on Roku with Nana Pat when Dad said that he thought he would like some fried chicken from KFC.  After I got back with the two drumsticks requested, Dad ate them like a champ!  YAY! Oh, no, wait, here they come.  Right back up.  Poor guy.  Which then threw Dad into an incescent and desperate coughing fit, prompting my call to the Hospice Emergency Line.  For those of you unaware, when people go on Hospice, you no longer call 911, you call the Hospice Emergency line for the on call nurse.  Somehow poor Terri, our Angel and great family friend, who was out to dinner with Anne got the on-call call though she wasn't the nurse on-call any longer.  She rushed down from uptown to see what was going on and in the 10 minutes from when the terrifying coughing began, Dad finally was able to get his breath again and relax at least a little.

Here's my predicament:  Dad is still such a proud man and no matter what I do, I don't want him to feel any humiliation, though at this point it's kind of inevitable.  I have a hard time transcribing his blog for him, because a lot of the stuff he wants to say isn't exactly the truth anymore, such as "I have a hard time walking."  Understatement of the century.  I feel like I owe it to myself and all of the people that care and have cared about him over the years to tell it like it is.  I hope that's okay.

Bedtime came, and it was hell to even get him into his hospital bed.  He has lost control of pretty much all muscle function and so he is totally unable to get his legs into bed or move them when they are there.  He is unable to flip over or even slowly turn in bed.  Luckily he can still tell people when he needs to go to the bathroom, but getting him into position to do so is back & heart wrenching.  Okay, so back to our sleepover.  I think maybe between 10pm when we went to bed and 7:45am this morning I got about an hour maybe a little more of sleep.  He's constantly uncomfortable and needs to pee a lot; between those two things bedtime is actually a full time job.  Dad can get a little confused at times so at one point when he asked me to turn him onto his side and I did (a 4 part process at least) he told me that I had turned him onto the wrong side!  AHHHHHH!!!!

Anne woke up this morning and relieved me.  I was supposed to have brunch with them at 10am but had to limit myself and tell Anne and Dad I couldn't do it.  So I slept until 12pm and am still pretty groggy and exhausted.  This blog may not make any sense!  I'm signing off for now and going to sleep.  Again.



  1. Oh Lily. This is the hardest part. The loss of dignity and independence. He is so lucky to have you!

  2. Hello Wil, Lili, Josh, Anne and others. We have the latest news,Wil and are resigned to the inevitable and making decisions and plans to come see you and the family as soon as possible. Sending you warmth, love, and light and wishing you peace. Jean Ann, Keenan, Ryann, Ian, and David.