Friday, January 14, 2011

cussin' kind of day

It began around 1:30 a.m. last night. 
I was awakened by a loud **sigh**.
Just when I doze off:  **sigh**.
This happens when John can't sleep at night.  The last couple of weeks he had gotten good about taking a p.m. or ibuprofen or something to relax him to fall back asleep.  For some reason, he wouldn't last night.  And just when I'd doze off:  **sigh**.
Around 6:30 a.m. I asked if he'd like to go to the couch because sometimes he sleeps better there.  He must have thought I was sending him to the couch because he had a little attitude about it, grabbed his pillow and headed out.  Not sure if he slept or not.

Which means he had a rough day.  He ate b'fast then laid back down, got up, laid back down, back and forth until around 11:30. 
For about 2 weeks, John has been trying to get me to make an appointment with his accountant to get quarterly tax info to him, and to ask questions about what is business/what is personal now that the business has sold.  I called the accountant Wed and he said come Friday [today].  I did all this in front of John, plus explained it to him after I got off the phone.  He gave me the 'thumbs up.', when he reminded me of the appt, and the time grew closer, he lit into me about 'how could we expect the accnt to drop whatever he was doing to get his quarterly done while we waited.'  I explained that we were only dropping things off and asking questions, NOT waiting for him to do the report today.  That appeased John for a few minutes, then he started in on the 'I never tell him anything' and 'we shouldn't drop in on the accountant.'

The lady from his health insurance company called for the fifth time wanting to know if he wanted the new program that waives a limit on Hospice coverage once your deductible and out-of-pocket are met.  I have explained this to him a gazillion times, and how we need it now that we're paying for Hospice.  He kept saying we didn't need it.  This, piled on to him being mad about going to the accountant put me over the edge.  I told John he was "frustrating the hell out of me." 
His reply,"You're always right; never wrong. blah, blah, blah"  He went to the living room and put his head between his hands and sat for a long time.  Wouldn't eat lunch before we left for the mtg.  I told him I was sorry.  I really did feel guilty for telling him he is frustrating because I can't imagine how frustrated HE must be, not being able to communicate.
He took bananas, water, crackers, and an orange, and ate in the car on the way and back.

The mtg with the accountant went well.  I have a few assignments to follow up on.  John insisted on paying him for the work he's done this year, to make sure he's taken care of because the accountant has been such a big help to us.  The accnt asked his secretary to pull John's file and see what the balance was.  She came in carrying a folder and said he didn't owe anything.  I looked at the accnt and he nodded and said that sounded right to him.  The secretary winked at me.  Not sure what's going on, but I KNOW he's owed for this past year.  John accepted his word and went on to the next subject.

On the way home, we went by the bank and the bank girl said John had some mail returned from them.  I confirmed his mailing address, but she said an account manager would call.  The lady did call later in the day and insisted on talking to John.  [I have already been to the bank and filled out a POA and told them what's going on with him and that he can't communicate very well.  If she can't see this in his 'file' then let her talk to him on the phone!]  I handed it to him when she called and they chatted.  Not sure how it went but I'm sure she came away from the conversation very confused.  too bad

We also stopped at the PO box and Publix.  Going north on Monroe, if you turn left onto the truck route, there is work on the road on up at the railroad.  Sign-holders have traffic stopped and it's only one lane traveling at a time.  There wasn't a sign telling you the street is blocked if you're going north turning left, so I did it.  Of course our lane was the one stopped.  They let oncoming traffic thru, then traffic coming out of Publix, which was where we were headed to check on John's meds. 
While we waited for our turn to go, the first car in line, about 4 cars ahead of us, asked the sign guy if he could turn into the Publix parking lot.  No one was coming, and cones divided what looked like a lane going to the shopping center from the one lane for traffic on the left side of the road.  A trooper sat on the side of the road where we waited.  The sign guy wouldn't let the first car scoot on.  Well.........once it was our turn, the sign guy on down the road motioned for us to go on the left side of the cones, but the first car went by one cone, then got in the right lane to go to Publix.  All the cars between us did the same.  The sign guys were having a fit because we weren't in the 'correct' lane.  But we all had on our right turn signals.  I knew where I was going. 

About that time, the trooper flipped on his lights and siren and was coming up behind me, the last car turning right.  The monologue in my head went something like this, "Bring it on, buddy.  With the day I've had, I'll win.  I'm not stopping."  I looked in my rearview again and he had turned off his lights and started backing up to where he sat before.  Ha!  We were doing NOTHING wrong.  I guess the cars behind us got in the left lane and did it right. 

John's medicine had no more refills and they are going to call the dr for more.  Like John said, it's on automatic refill.  They should have already done that.

Finally got home, ate, went to town to fax John's insurance permission to opt-in for the extra Hospice coverage because the accnt told John it sounded good to him.

Now John's head hurts but he's been asleep since 9 or so.  He went to bed around 6 but couldn't sleep.  I laid with him and while we talked, he said,"I know you're hurting.  Tell me what you think."  I told him again that I don't want him to go and I'll miss him a lot.  He likes it when I tell him that. 

Thursday, January 13, 2011

guys surprise

I'm so surprised at how many of John's guy friends call him and come by.  Where are all the old girlfriends who still chased him until recently??  Who cares.  I am impressed and kind of surprised that the men have faithfully emailed, called, and visited regularly.  You would think men are unemotional and non-relational, but quite the opposite has been proven around here.  Also shows the quality of friends and deep relationships John has.

Yesterday and today, John has had less words than before.  He is more frustrated that he can't communicate well.  He showed me several things today when I couldn't understand what he meant.  He walked laps around the house tonight, which he hasn't done in a long while.  I read an article to him about the essential doctrines of Christianity and it got him wound up thinking about God.

Wednesday, January 12, 2011

catching up is hard to do

Seems like forever since I've written.  Looking forward to getting in the groove again.

My first day home on leave and it was a busy one.  Mama and Daddy came by, and the Hospice nurse and Hospice social worker.
John's vitals are still strong.  He does drag his right foot more and he has less control of his right hand/arm.  His right eye is droopy and puffy underneath.  But he eats good, rests all night usually, and still cracks wise.  Lately, every noun is the word 'internet' so it's hard for me to follow some of his statements.  Such as, "If you go to the internet, we need internet on the internet".....literally how it goes, especially when he's tired.

The social worker came bearing bad news.  We hoped the Hospice higher-ups would let us be 'self-pay' and help us out with our bill, but since John has insurance, we can't.  This means we have to meet the deductible & out-of-pocket, then insurance will cover  up to his lifetime limit, which is about 1/3 already used.  There is a new part to his insurance, if we opt in, that would raise the limit for Hospice care--actually make it unlimited....after deduct/o-f-p.  Either way, we don't have the thousands a month Hospice costs, so we'll make payments.  Unless I can get him on SSDisability, which will enroll him in Medicaid, which will cover Hospice  totally, plus meds, I believe.  Will try to finish the SSD stuff tomorrow.

My replacement, Rebekah, did well yesterday.  She taught while I watched and tried not to interfere too much.  It was hard not to jump in when every little noise was made or kid got up or talked too much.  She will toughen up and do great.  Mama is going to keep volunteering. 
Sent a letter to the parents explaining briefly why I was taking a leave.
The bookkeeper helped me place the days for each pay period and my last leave day would be used up on May 8th.  It is such a relief to be home with John. 

One more broken item:  a glass bottle of makeup remover.  John was putting it back on the little bathroom table after his parents left Saturday.  I move most of our things out so they can have easier access.  It was a sticky, gooey mess on the tile but it came up for the most part.  Still finding little pieces of glass in the corner of the bathroom.

Rushed to get my report cards done last Friday.  Lame comments on most of them!  Managed to get several days sub plans done for Rebekah, loaded the treasure box and soap dispenser, updated the web page, ran off a gazillion worksheets, checked out books from the library, unrolled cotton balls, graded tests and uploaded scores, filled out paperwork on a troubled child, all since Friday.  Even taught a little in between.

John's tumor bulge is weirder and weirder.  It's getting longer, swelling at both ends, with more fluid pockets and one area in the middle of the middle that bleeds when I take the bandage off.  Today it looked like there were fewer fluid pockets and that one possibly leaked and is now a caked mess at the bottom of the bulge.  Sharon cut his hair Sunday and it's MUCH easier to wash his hair and pull the bandage off.  The last time she cut it, he thought that would be his last haircut ever.  nanny nanny boo boo  it wasn't

I'm taking pictures of the bulge every few days.  John says I need to sell them one day and make money.  I'd like to take my blog posts, email updates, and pictures and write a book about this experience.  We've had a lot of questions along the way, most of which received the answer 'everyone is different.'  No one, not even the doctors, would commit to a definite answer of what to expect or the order of decline.  Friends who have been through similar experiences with cancer are more help with information.  Imagine a book that walks people through the ups and downs and stages of decline, as well as services available, and what to do and not do.

John enjoys getting phone calls. He's so bored, even with me here.  He especially loves it when his niece calls. 

It's frigid again, in the 20's at night.  Tired of it and ready for spring.