Friday, April 29, 2011

A blessed day!

Chalk this one up as a good day.  No excruciating pain.  No surprises.  No ambulances.  I even stayed in my jammies until 5:00p.m. when I decided to go get the mail.  Didn't want to get arrested, so got dressed to go outside, but only for 5 minutes!

Today was bath day for Paul, and our precious hospice aide/angel showed up this morning just like she has for the past 6 weeks.  She is such a shining example of God's love.  She is originally from New Orleans and has the most beautiful accent.  Seeing her always smiling face begins my day on such a happy note!  She treats Paul with so much respect.  I love watching Shaneen's gentle and caring attention to Paul.  I can tell he really likes her too.  She always calls exactly 10 minutes before she drives up in the morning (Mondays, Wednesdays, and Fridays).  That gives me time to medicate (morphine) Paul so that Shaneen can move him around in the bed without him being in so much pain.  (And since we NOW know about the new clot in his right leg, they are letting me double the dose.)  You should hear how she talks to Paul throughout his bath with such tenderness and respect.

Shaneen has taught me that for a bedridden patient, a huge concern is bedsores.  You have to really stay alert and make sure he never lays for very long at all in a soiled bed.  Plus it's important to change his position from side to side by rolling him and propping him up with pillows every 2-3 hours.  One day, as I assisted Shaneen when she was spreading cream on Paul's backside, she said, "Mr. Paul, I hopes you knows that Miss Carleen here really loves you, cuz you got da best butt of all my patients!! Yo skin is so pretty on yo behind!"  Never thought anyone would rate how much I loved Paul by how nice his butt looked.  Duh!

Here's our precious Shaneen brushing Paul's teeth.  See that loving glowing smile!!

This evening while Paul was enjoying an ice cream sandwich I discovered a big box by "Harry and David" left on our front porch.  It was a fruit and goody basket from Paul's family:  Woody, Pud, Martha, Sally and Bob!!  Yummmeee!  Thank you!  We'll be having these goodies as "afterschool snacks" for the next couple of weeks!
A good day was had by all.


Learning How To "Blog"

Today is Thursday, April 28, 2011.  I have been sort of keeping a daily journal hoping to send the usual "Paul Updates" to my ever-growing email list of our friends.  Since I get time to do this at such unusual and unpredictable times I have decided to create this blog.  I'll do my very best to keep it updated and leave it up to you to read/react/respond as you need.

In this first post I'll try to include the last few email drafts that have been accumulating without being sent.  Hope I'm savvy enough to "copy" and "paste".  Don't know how often I'll be able to sit here and do this but will try.  Eventually I'll send a link to those of you who have been on my "Update" list.  Hope I can learn how.  So here goes.

Monday, April 25
I can't believe it's been almost a month (March 28) since my last update.

Paul's Mom and Dad are driving here from Lexington, Kentucky and should arrive mid-afternoon today!!  WoooHooo!  

Paul has had NO MAJOR MEDICAL problems this whole month!!  A true blessing, since 911 had become one of our speed dial numbers.  Has good vital signs and still eats pretty well.  Still avoids drinking enough water so I have been tempting him with all sorts of exotic juices/nectars which seems to be working!  The move of his hospital bed from our bedroom into the den has really seemed to improve his spirits.  I bought him a really big TV which fits perfectly into the built-in entertainment center.  It's ON constantly, however, since he has become unable to work the remote-control he has become a "sitting duck" and has to endure whatever channel I choose!!  [Prior to this, "Dancing With The Stars" had NOT been on his list of favorites, but it is now..., I think!]  He does continue to struggle with his speech, causing frustration.  But he's still in good spirits and enjoys visitors.

This month we had a wonderful visit from Paul's Uncle Sym and Aunt Marj!!

We also had visits this month from Clark Nielsen, Jim Patton, and Larry Thompson who stayed with Paul while I got a very enjoyable pedicure (upon Larry's insistence)!!  Thank you guys for being such loving and caring people.  I very very much appreciate all of your help.  

I even got our paperwork to the CPA to get our 2010 IRS taxes filed.  Yuck, how I detest that chore, especially since that was something Paul always handled.

In early April my wonderful friend Patti Davis helped me plant about 10 gazillion flowers finishing way after dark!!  Aunt Marj took this picture.
 In the foreground of the previous photo, those are "ancient" Amaryllis bulbs from my dear mother that Patti dug up from the old house in the final moments of the move and that I had then transplanted at 3:00a.m. in the freezing cold sleet on our very first night in our "new" home.  (NOW I wonder where THAT energy came from after the previously exhausting 16 hour day of moving?)  They lived!  All 18 bulbs finally burst out into triple blooms just the week before Easter!  Took pictures so Paul could see them.
Later on during the month Patti reacted to her "Caregiver Burnout Radar", kenneled her puppy and 3 grandkids, and just showed up with her suitcase to spend 3 valuable nights here, giving me a very much needed break.  Bless you, my dear friend.  You saw the signs probably just prior to my total energy collapse and came to the rescue "in the nick of time".  And the "Rescuer" was "Rescued"!!!  Always thought I was pretty savvy, but I just didn't SEE that I really needed help.  Again, bless you, my dear friend.  Then she came to the rescue again (just last night) Easter Sunday evening at 9:00p.m. after my frantic call needing help changing ALL of the sheets on Paul's hospital bed after an "accident".  That is something I know I am just not physically capable of doing alone since he can't get out of the bed.  180 pounds of man, in pain, is not easy to move...

Aunt Marj also snuck a shot of Paul getting a Smooch!!  Geesh, that's one lovable man!!

And here's Rocky's usual spot!!

I had been thinking about the never-used Power Wheelchair we had finally received, so one day I asked our Hospice Nurse (Elaine, a WONDERFUL gal) about her opinion of somehow getting Paul out of bed.  He's been in that bed for the past 5-6 weeks.  Within hours she had a Hoyer Lift delivered!  She returned that afternoon to teach me how to use it.  I was so very excited to be able to get Paul OUT of the bed and out of the house.  He had never even seen our backyard in this new house and I had planted tomatoes and cucumbers and flowers everywhere!  Plus we have inherited 4 fig trees, a huge Rosemary bush, a Bayleaf tree, and a Mexican lime tree planted by our truly wonderful landlord and his wife!  And right now the weather in Texas is as pleasant as it can be, but for only a short time before the HEAT becomes unbearable.  Paul always loved being outside at the old house.

Well, we rolled him back and forth in the bed to get the sling placed beneath him, but as we began to manually-hydraulically-pump him up out of the bed he was in so much pain that it broke my heart and I fell to pieces and stopped the whole procedure.  Elaine was so very patient and consoling and gave him a dose of morphine (which I would have done prior to moving him IF I had known that he would be in so much pain).  She explained to us that this pain was probably muscular.  And that because Paul had been bedridden for so many weeks without any movement his muscles were complaining and that if we would do this more often those muscles would loosen up and begin to cooperate with less pain.  In a bit we continued the transfer from bed to wheelchair, but still he was experiencing lots of pain as the morphine might not have yet taken effect.  But once he was in the chair, he was instantly happy!!  Me too!  I rolled him out the front door, via the thresh-hold ramp I had had installed previously, and then to the back patio.  The sun was shining, the sky was brilliant blue with small puffy white clouds slowly rolling along, birds were singing and flying all about; the flowers, trees and bushes were swaying in the slight breeze, ---and it was heaven!!  Just like our "old" days before the damn brain tumor.  We laughed and joked, and I promised to go online to order a new gas grill so we could "DO" steaks like we used to do!!  We stayed there for about 20 happy minutes until he said he was tired and ready to go back to bed.  Short but sweet.  Oh, the memory of seeing his face as he absorbed all of God's wonderful nature around him; seeing his joy, was such good medicine for me.  That was such a good day and I'll never ever forget it.  Wish I had thought to get a pic of him outside gazing at our lovely backyard.  

 Here's a pic of the "Dreaded Lift".


Ever since then, Elaine or I have been gently suggesting/offering to repeat that day but Paul remembered the pain and has refused our offers.  But today was different.  Elaine came here again hoping to convince Paul that he needed to let us try again to get him up and out of that bed for his own good; stating that moving his limbs would prevent the dangerous blood clots from reforming in his legs again.  She said, "Come on, Marine, suck it up!"  And Paul agreed to try it again!  So early tomorrow morning I will dose him up with his pain killer, Elaine will arrive at 8:00a.m. and we'll go through the "lift" drill again, then she will return at noon to get him back into his bed.  My only hope is that it won't be too painful for him or for me!

Around 2:00p.m. Paul's Mom and Dad "dropped in" from Lexington, Kentucky!  They drove 18 hours after church on Easter Sunday.  Mom brought her famous yummy "chicken casserole" (Paul's favorite) and lots of other good eating stuff!!  My favorite biggest help is whenever I DON'T have to worry about cooking a meal.  Was able to get that chicken casserole recipe!  It's sooo good, will "knock yer lips in the dirt!!"  I love my mother-in-law!  And Dad immediately took care of the huge box that HAD contained our new gas grill ordered online!  He's the garbage King!!  Paul had certainly become my garbage KING but the tumor squashed all that.  This might sound like a silly thing, but it's those "little" things like that which are a VERY REAL help to me.  I've gotten so easy to please!  Don't tell Paul.  Gee, I feel so guilty that I did not really appreciate all the little things that Paul did.  I'm so sorry, darling.

Mom and Dad will be back in the morning and will stay with Paul while I go to the dentist.  It's either ironic or crazy, but I've been looking forward to a 3-hour dentist appointment!!  This is MY opportunity to lay down and have people waiting on me!  LOL    

Gotta go, he's waving at me and needs something.  He needs me, and I need him. 

Tuesday, April 26
7:30a.m. gave Paul his pain stuff.  8:00a.m. Elaine shows up.  We get Paul into the Power Chair.  Lots of pain though...

9:00a.m. Mom and Dad arrive, cook breakfast, yummy.  Paul gets to eat breakfast at the kitchen table sitting up for the first time in over 5 weeks!

Elaine is supposed to return at 11:30am to get Paul back into bed but at 10:00 he can't take it anymore and wants to go back to bed NOW.  So with Mom and Dad's help we miraculously "git-R-done"!!  And I leave at 12:30 for my dentist appointment.  That night we BBQ'd steaks, yummy!  Great day.  Plus I'm spared from kitchen patrol.  Love my in-laws!!

Wednesday, April 27
Having our folks here for support I had excitedly scheduled Rocky for a long-overdue grooming at 10:30a.m. and then a 4:00p.m. appointment for me with a massage therapist (massage courtesy of a Feb. 5 birthday gift from my son Ben and his sweet wife Shanna!!).  As fate would have it's way, neither appointment would be kept.

Paul gets a morning visit on Mondays, Wednesdays, and Fridays, from Shaneen (a precious Hospice Aide) who gives Paul a bed-bath, shave, and general sprucing-up.  Today was different in that Paul was in unusually severe pain upon the slightest movement of his right side.  I made an urgent call to Hospice for assistance with Elaine responding immediately.  It was determined that X-rays were required for a diagnosis of the origin of pain. An ambulance was immediately dispatched to take Paul to the emergency room.  (So we didn't quite make it a whole month without a hospital visit after all.)  Cancelled Rocky's grooming and my massage.  After I had answered all of the ER nurses' questions about the events that had precipitated this ER visit, Paul spoke.  He slowly said, "For the record, everything she said is untrue".  Ouch.  Really ouch.  Really really ouch.  We then spent the next 8 hours in the ER undergoing tests until the doctors decided to admit him overnight.  An ultrasound had found another large blood clot in his right leg.  And also showed that the old clot in the left leg had been absorbed/disappeared.   Chest x-rays showed no other problems.  So he stays overnight.  Unhappily.

Thursday, April 28
Our doctors determined it was safer to let Paul's body absorb the blood clot and for us to simply address the current pain with enough morphine until nature could eliminate the clot.  He was discharged today and returned home by ambulance at 2:30p.m.  Paul absolutely HATES being in the hospital or ambulance, so that's when he must feel entitled to unleash his "nasty" side, therefore he is definitely NOT the nurses favorite patient!  They are always kind, but become gleeful when he is discharged and waste NO TIME getting the paperwork done to get him outta there!!!  Those of you who know Paul KNOW it is so unlike my Paul to be undiplomatic, crude, or downright incredibly rude; but it was all I could do to apologize over and over to the hospital nurses and the 2 young EMT/Ambulance attendants for his behavior.  I was actually ANGRY at him for the FIRST time since we've been together.  And then naturally, of course, I felt tremendous GUILT because of my anger towards my precious husband who is dying.  Duh.  Thankfully Elaine (our hospice nurse/angel) showed up just as the ambulance was leaving. How did she know I was crumbling?  Her timing was impeccable.  (See God working here to get me through this.)  She helped me understand that my anger was normal but to remember that all of this was the "Evil Brain Tumor" rearing its ugliness.  Thank you Elaine.  Thank you God for sending an angel.  I got over it.

Tonight I grilled baby-back ribs, baked potatoes, and grilled zucchini and we FEASTED and CELEBRATED his return home!!