Nana’s Notes:

PT two times out of room – had him dressed in T shirt & shorts – he was able to help with shirt, but not shorts.  Had him in depends (he did not like that).

When I came in, he was discouraged.  Came back from second PT & therapist said that Papa said it wasn’t worth it – he just wanted to go home & die.  Didn’t want his grandkids to remember him that way.  

Therapist and I gave him a pep talk & he was better the rest of the day, willing to work with it.

 

Email: (from me to a long-time family friend who’d specifically asked how she could pray):

Prayer requests:  

For God’s will to be done and for the rest of us to be at peace with that.  Right now Dad is pretty uncomfortable & miserable/discouraged.  Not able to talk well, understand well, eat well, get around well, take care of bathroom business well…. can do all somewhat, just not very well at this point & has to be dependent on a lot of other people for help – hard enough for anyone, but I’m sure for men it’s even harder.  Has a long road ahead of him to get some of his faculties back and battle this cancer, so encouragement from above for all of us would be greatly appreciated!  

Mom is doing pretty well, you know how strong she is and how she can take things in stride & depend on God even in the worst of times.  But I know it’s hard on her too (of course!) – Dad isn’t the happiest patient right now… good thing Mom is such a patient person, but I know it’s hard for her to see dad in such discomfort and in such low in spirits.  She was at the hospital the whole time my dad was there after surgery (which = not much sleep).  She’s been home the past couple of nights since Dad’s been at rehab and she’s staying at our place the next few nights (we’re a bit closer to the rehab facility than their place is).

I’m definitely feeling more at peace the past couple of days (thanks to prayers, I’m sure, and also the fact that Dad is more stable now and able to be in rehab).  Could use prayers for discernment to understand what my dad’s saying (can often understand the gist of what he’s talking about, but there are other times when I/we don’t have a clue!).  Also for balance with focusing on my family of J & the boys and focusing on being a support for Mom & Dad (have had wonderful help from extended family and friends watching the boys for me and have been able to get to the hospital/rehab every other day thus far).

Okay, Little M is sleeping and big boys are at the beach with J’s dad & stepmom.  Need to make the most of nap time and get myself ready before somebody decides to wake up!

Take care and thanks for your love and prayers!

Love,

Kari

 

My Reflections:

Nana’s at our place in the morning and makes one of Papa’s favorite meals,  homemade macaroni and cheese:

 

Even though Papa’s still at risk with silent aspiration, he’s being encouraged to eat by his medical staff to get his nutrition up and his swallowing strengthened.  The nurses have encouraged Nana to bring in some of Papa’s favorite (& easy to chew/swallow) foods that might appeal to him more than the standard hospital fare.  Mac & cheese seems to fit the bill perfectly.

Papa is excited to see it when Nana brings it in, but he still doesn’t eat much.  We half-wonder if he isn’t eating due to his lack of will to go on like this….

I come in in the afternoon (the preferred time for visitors since Papa’s occupational, physical, and speech therapists all meet with him in the morning).  This particular afternoon there’s round table discussion available for the families of patients.  All the therapists are present and each family that attends rotates around the room to have individualized time with each.  Even though Papa just arrived a couple days ago and has barely begun his therapy sessions, it’s still a good opportunity for Nana and me to attend, and we do.

The therapists obviously don’t know Papa very well yet, but they each fill us in on what they are, or will be, working on with Papa and their goals for him:  for him to take a few steps with a walker, use a fork properly, identify and pronounce letter sounds correctly, etc. and so forth.  We rotate tables going from one therapist to another, listening to them and asking our questions.  I’m not sure what it is, but as one therapist describes Papa’s current condition and what to expect, etc., I try to look attentive, try to look pleasant, but inside I feel like an annoyed and defiant teenager.  I want to slouch in my chair, cross my arms across my chest and glare her down.  I’m thinking it but not saying it,

“This isn’t my father you’re talking about!  You don’t know anything!  You have no idea how brilliant and capable and independent he is, or at least was, just a few weeks ago!”

My inward ranting is quickly cut short though as Papa’s case worker (or similar representative) who is also present at the table interjects something about Papa being a mechanical engineer and how he’d hopped back from his retirement into consulting work for an important project just a few months earlier.  I don’t know how she knows this, but assume she’s at some point talked with Nana about the pre-cancer-diagnosis Papa.  And I’m so grateful.  I’m grateful that she seems to get it.  That she knows this current version of Papa isn’t who he really is, who we really know him to be.  That Papa isn’t just a man with a brain injury who can’t talk straight or go to the bathroom straight.  He isn’t just a cantankerous old guy who gets annoyed with his nurses and doesn’t realize that there’s food on his face when he’s trying to feed himself.  That this man still has dignity worth acknowledging, right here in a round-table discussion with his therapists who know nothing about him except the limitations they’ve seen in him during one or two therapy sessions.

And I later walk the halls of the rehab, past a girl with legs strapped wide in a wheelchair, head cocked back and to the side, mouth limp and open; past a teenage boy, eyes a bit distant and head wrapped big in gauze bandages being pushed in a wheelchair by his father; past an old man, shuffling his feet in his wheelchair down the hall, looking eccentric and disheveled….

And my eyes are opened wider.  And I realize what I haven’t seen before:  that these aren’t just invalids I’m walking past in a hospital corridor.  This isn’t necessarily the “them” their families know them to be.  Very likely they too have a brilliant, capable and independent past.  And even in this current state that no one would choose for them, they have dignity all their own.  They’re people and they’re valuable and they are loved.

I need my eyes to stay open.  Open wider.