Day +5 – Slowing Down

July 21, 2012
Quail Run Lot 15 and Moffitt Cancer Center Room 3715

 

When I arrive this morning he is sitting in his chair.  He has had his breakfast with no incident, been for a morning walk and now seems more tired than in previous days.  His sleep last night was again a series of 45 minute naps all night long but that’s entirely responsible.  His counts are starting to affect him.  I ask how he feels and he says
“Like my brain is in slow motion.” 
I actually noticed this a tiny bit on Thursday and more yesterday. Later in the day he says
"My mental acuity is down, my energy is down, my stamina is down.”  He is considerably different in one day.  The downward spiral seems to have started.

And no wonder, look where his numbers are.  In one week his white cell count is down from 8.02 to 0.21.  He’ll be at zero possibly tomorrow but for sure by Monday. 

 

 

 

His nurse Michele comes in to start another saline drip.  He is still not drinking enough fluids.  He has a hard time remembering since with the saline infusions he isn’t thirsty but unless he drinks more they can’t stop the saline infusions. He also worries that so much fluid especially in the afternoon will wake him in the night.  Although this issue of water intake is something we have had “discussions” about for years.  They are making sure with these infusions that his kidneys are taken care of so they can take care of flushing his system of the toxins.

 

 

 

Shortly his week-end care team comes for rounds.  He talks with his Doctor about the decline in his mental facilities and his tiredness.  She says he’s right on target.  Not sure that makes him feel much better but it is the fact.

 

 

 

After they leave, I am on the phone with my father assuring him that I’ll get his doctor’s appointment transportation for next week arranged and get someone to come out and look at the leak in his roof.  At 92, and with macular degeneration, he gets very worried since he can no longer see to do the things he’s always done for himself.  He doesn’t want to go into assisted living and I don’t want to force the issue unless there is no other choice.   I pass the roof problem off to my sister-in-law who has it set up for 9am in the morning in no time.   Thank you Cindy!

While I am talking to to my father I see a call from Carrie come in.  I call her back, we chat shortly and then has a pleasant time as always talking with his daughter until just before his lunch is delivered. 

This is a very busy place for a tired guy.  When Michele hooked up his 4 hour IV drip earlier she also gave him some IV Zofran which works much better than yesterday’s medication and he has no nausea for either lunch or dinner.   That’s a great thing!

 

After lunch Christine comes to take his vital signs.  He naps a little bit more and then we go for the walk around the park.  He’s walking slower.  Not dragging but he’s breathing more heavily by the time he gets to lap 4 than he was yesterday.  Still he does all six laps.

He rests after the walk and then does the Spirometer lung exercises.  Usually he can take it clear to the top pretty much every time.  Today out of his ten tries he is still able to do that twice.  For the rest he gets “almost” all the way but he is clearly aware of the difference in his lung capacity.  He knows the exercise is important and he’s giving it good effort.

 

 

He’s also doing a good job of pacing himself around all these things they want him to do: drink more fluids, eat 3 meals, take 3 at least four lap walks, use the spirometer, do the PT exercises, take a shower, get the infusion, have your vital signs taken 4 times a day.  WHEW!  Just typing all that out is enough to make me tired.

He wisely does one thing and then rests or naps before doing another. 

Time now for the shower where he has to make sure he does not get the dressing around his line wet.  This is pretty difficult.  We try to cover it up with a plastic shield of Glad Press n’ seal.  When he finishes it doesn’t seem wet to me but a tad damp as though the humidity had settled on dry clothing.  We’ll have the nurse check it to see if it needs to be changed.  He feels better with clean clothes.  Back to green sox.  He has 3 pair of those now.

 

 

Dinner shows up at 5:45 and goes off without a hitch.  I heat up mine too and we eat together.  Afterward he lays back in his chair, the lights dimmed and I read to him until it’s time for me to leave.  As with many other times today, he isn’t sleeping, he isn’t sleepy.  He’s just tired and resting.

 

After I leave he will do his exercises and take his last walk of the day.  I’m hoping tomorrow he can do his exercises earlier in the day.  With his decreased energy everything seems to take longer although he says that this slow down he feels make the days seem longer.  For me it seems like he was constantly needing to do something, people in and out all the time.  He closes his eyes for 10 minutes and someone opens the door.  Sometimes just to see if he needs anything.  This is very attentive and I don’t want to discourage it but tomorrow I’m going to open the blinds of the window by the sink so his caregivers can look in from the hallway and put this sign on the door until I leave.

Please check in the window to see if he is Sleeping.
If so, Don’t Disturb unless you Must.

Hopefully this way, if he is awake they can check and if not they can check later.  I must give Moffitt very high marks for their efforts to accommodate anything the family wants or needs.  I could spend the nights on his couch if we chose.  But we think it is more important for me to get the highest quality sleep I can while he has such good overnight care.

We’ve been expecting this turn of events, and now it is here.  I’m not sure he’d say he’s glad but we’ll both be happy to get beyond it and he has to go through it to do that.   Tomorrow is another day in that direction.