Friday, December 24, 2010

Christmas Eve

Last night was awful.  John woke up about 2:30 and couldn't go to sleep.  He got up and went to the couch.  That didn't help so he started his laps around the inside of the house.  He had taken ibuprophen or tylenol p.m. or something around 12:30 and didn't want to take anything else.  I walked laps with him, talking all the while, for about 15 minutes.  He tries to wear himself out doing it.  Then we went in the kitchen and he ate a bowl of cereal; back to the couch.  Tummy full, tired from walking.  It took until 4:30 then we slept fairly well.

Today John had even more trouble holding his spoon and fork.  He can't see what he's putting on the utensil when he uses his right hand, plus it's getting lazier.  It's equivolent to using his left hand; the right is weak and the left is not used to being utilized.  It takes him a long time to eat a meal.  But eat, he can.

One of the 'grandmas' down the street came over with a couple from church.  They brought pound cake, 2 kinds of fruit cakes, [about 10 slices total], candy, fudge, cookies, pecans, pickles, and chicken tetrazini.  Oh, and oranges.  I think that's all!  John hit the chicken tet 3 times today.  He loved it.  And has eaten 3 oranges, although I have to peel them.  We had a good visit with the trio.  "Grandma" has lived here a long time and knew some history on our house.  The man who built it was Jefferson, so it's called the Jefferson House.  He owned a furniture store; had a wife.  The sun room used to be an open front porch.  The rest of the house is original, one of the largest in town at that time.  

I spent several hours in the yard today for the first time in a while.  It felt wonderful to cut limbs, pull weeds, mulch leaves and put them in beds.  The weather was cool and slightly overcast...perfect for yard work.  The neighborhood animals all passed through at some point.  The dogs were looking for John because he gives them treats, and gave up on me pretty quick and went home.  

Had my first really good cry.  Hospice gave us a book about the steps of dying, and at the end is a short piece about how death is like a ship disappearing from your view.  It's still there for someone else to see, carrying its cargo just as it was when you last saw it, but it's now out of your sight.  John keeps telling me that, and I know it, because all people will live forevermore, either with God or separated from him, but living nonetheless.  I will see John again one day.  But I really don't want him to go at all.  He's snoring on the couch right now and it's music to my ears.  Looking forward to going to my parents tomorrow for Christmas and spending the night with everyone.  Won't be spending the night with Marshall tonight as I always have, but that's ok.  Next year.  

Merry Christmas to all and to all a good night.

Thursday, December 23, 2010

I'm bored out of my mind

John's favorite saying today.....I'm bored out of my mind.  Can't read, can't write, can't keep up with conversations on tv.  He took out some of his Bible commentary books and looked at the pictures in them.  I asked if he remembers the stories when he looks at the pictures.  He said pretty much, and pointed to a map of Israel and a particular place on it.  He remembers that Paul and Jesus spent time there, and in his head, he can recall this and loves those stories.  The sections of the books have large headings and I asked if he could read them.  Yes, in his head but not out loud.  The brain is an amazing thing.

We played checkers and I finally beat him!  Mama was our only visitor, and only because she left her jacket yesterday.  John's niece called.  He knew she was going to because his brother told him yesterday.  He got up expecting a call.  With the 2 hour difference, I wasn't sure how 'early' she'd call, but around 11 our time, I heard the phone ring and him say, "Oh, goodie."  They talked for a long time.  The highlight of his day.  We took pictures of ourselves outside under the gorgeous Bradford pear tree.  He wants the kids to see the beautiful colors of the leaves because all they have now is evergreens covered in snow; no colors.  

John and I changed his patch tonight, & I really think the tumor area is not as protruding.  I mentioned it to him and he said "good.  Maybe it's growing in now and it will end."  I just roll my eyes at him.  I know what he means but don't like it.  He got around well today.  Would do an activity then rest; do another activity and rest.  He stayed up until 10 p.m. and is snoring in bed now.

Talked to the accountant and lady who is buying the business.  Told them to talk amongst themselves because it's stressing me too much to deal with business-selling language I'm not familiar with.  I trust him to make sure the paperwork is correct, keep her protected, and get this done.  Although I'm sure once it's finalized, John will be at peace that everything in his life is complete and it will be the true beginning of the end.  

John had me buy him depends today.  He doesn't need them yet, and Hospice will give them to us eventually, but he doesn't want his first accident to be at my parents' when we spend the night there for Christmas.  Bless his heart.  He thinks of everyone and every thing.  I've never purchased them before, so I wasn't sure what size to get.  Hasn't tried them on yet to see how I did.

Almost Christmas Eve.  Mailed class drawings and a flag to Snowball at Glacier, and {finally} a copy of my book to the agent who asked for a copy back in March.  Should've done it a long time ago, but you know, life.   

Wednesday, December 22, 2010

wild wednesday

All of the sudden I have 19 posts.  How did that happen?  Have I written that much?  Have at least 19 days passed since I began this blog?  Time is going too fast.

Today was a BUSY, busy day.  One of our friends from high school came over this morning, and brought his son, the aspiring film school student, to film John talking about his beliefs.  We waited a week too long to do this.  Last week John could still talk my head off about God and apostles and details, but this week, he's lost a little more language and comprehension.
The filming lasted almost an hour and a half.  A lot of it was repetitive, but he got across the main points:  all you need to know about God is in the Bible; Jesus and his sacrifice redeem us from sin; miracles and tongues are not for today; it's our responsibility to study the Bible.  It's his trust in God and knowing he's redeemed by Christ, that gives John the peace to be ready to die.  "I hate to say it but I'm looking forward to going."
The tape will be edited and uploaded to John's youtube account. 
This was one of the last things he wanted to do before dying.  It is all-important for him to leave behind writing and video of him sharing God's message.

After these friends left, we ate lunch, John rested, then Mama came over.  The hospice social worker came back with more info on payment options.  We all feel much better after coming up with a gameplan.  There are still unknowns, but we can let it go until after the first of the year.  

A guy John has worked with for years and years came by with his baby girl.  She is a doll.  They sat in another room and visited and played with the baby while Mama and I talked with Hospice.  It was a nice diversion for John.  The friend is going to come back later in the week.  

Talked to a couple of friends/family today.  It's so nice to be off work.  But.......I find myself frustrated with John from being around him all day and night.  Mainly because he gets ornery if decisions are made that he doesn't understand.  He still doesn't want me to get him on disability yet, and when we talk about it, we fuss because we see it differently.  Sometimes I want to throw my hands up and say 'whatever' but I let it go and try again later.  
I can see clearly when he's tired and should lay down, but he fights it because he doesn't want to be up all night.  That's when he gets really irritable.  But all in all, there's not much to complain about.  He's handling everything well and for the most part, does listen to what I say.  Maybe I'm tired and don't realize it.

Tried to talk to his health insurance company today but they won't tell me anything because I'm not attached to the policy, so tomorrow I'm faxing a durable poa so they can tell me what the policy covers and doesn't cover; costs; copays; etc.

Another warm day.  We walked a little, and John went out by himself to walk twice.
The Bradford pear tree outside our windows is a spectacular unbrella of yellow, gold, orange, red, and every color in between. 


Tuesday, December 21, 2010

nothing in life is free

lost original of this due to crummy internet connection

Substitute hospice nurse came by and brought bandages; was shocked at John's tumor/incision site; is letting dr know it's leaking yellow & has one spot dripping blood.

Last night he had trouble getting up off the couch but today he's been very mobile.  Right arm, hand, and leg are getting weaker.

A management company he's done lots of work for for years brought a feast over today.
Thankful for everyone keeping us fed.

Was warm and sunny so we went walking in the street twice.  Our neighbor who also battles cancer met us on her walkway.  We're all taking one day at a time.

Still working with Hospice to find a way to pay for services once the new year begins.
nothing in life is free

Monday, December 20, 2010

errands, naivate', and meltdowns

Ran lots of errands today, saw friends, made phone calls, met Hospice social worker, cousins came over to bring food.  Makes me wonder how I work and get anything else done!

I am so naive to think Hospice is free.  I know I posted earlier about this, but I'm amazed that their services "require" insurance or the family pays.  They don't hound you to pay but nevertheless, the bill is there.  There's going to be a huge gap when John's deductible starts over at the beginning of the year.  Plus, his insurance's end of life care will only cover about 38 days, which unclear to us, began 5 days ago, at the time of admission.  And the days are spent/used/claimed consecutively whether you use their services or not.  Which means we just wasted 4 days.  Unfortunately, the days are not service days.  Which means we'll get 16 days in 2010, then come Jan. 1st, we'll pay because the deductible hasn't been met.  So, does that mean we lose the other 22 days?  Do we get 22 days before the deductible has to be met?  They are thinking about putting John on 'self-pay' so he can get medicaid to pay for it, provided I get him on SSdisablility by then.  [friend in high place can make it happen]

We had long discussion of this with the social worker and the financial lady on speaker phone trying to sort it all out.  Still isn't sorted out.

John was his usual jovial self while the social worker was here.  The guy asked if this was his usual demeanor.  "Yes," I said.  "He's a laugh a minute."  By the time the session was over, John and I were so stressed, we almost had our first fight.  He says I don't tell him things I do; that I make decisions and have conversations with people and don't tell him.  He even cussed.  I do keep him informed and let him know what I do and what's said.  He truly doesn't always hear me.  What he was mad about was the disability.  I told him I haven't told him anything about it because I haven't gotten it done yet.  It seems to be the one thing too much.  We have the letters from his drs.  After we talked a lot about it and got it clear, then we cried.  It was a stressful afternoon.  I'm SO glad I'm home with him these 2 weeks. 

Hospice nurse will be visiting for the first time tomorrow morning.  I'm so tempted to get every service I can before the end of the year, but I don't want to be spiteful.  Our 'team' is very nice and helpful and have gone out of their way to see to our needs.
The tumor bulge has a spot that drips blood.  I think it's where a stitch is.  Hopefully the nurse can make some sense of it, and help us bandage it better.  The ace didn't work too well because in the night, when John would roll his head, it would slip off.  Right now he's using an old stretchy headband of mine.  I told him he looks like he's ready to run a race.  Looks like a sweatband from the '80's.

Also tomorrow, one of the management companies John has done tons of work for is bringing dinner/lunch/food.  I'm learning to accept. 

Sunday, December 19, 2010

perfect present

Had a great time at the mall yesterday singing the Hallelujah Chorus with a big bunch of strangers.....and some old choir friends I haven't seen in years.

John's friend, Mike, was at the house and they were eating wings when I got home from the mall.  I left them talking, and walked around downtown Havana for a while.  It was drizzling, cold, windy, and depressing.  The Christmas music was slow and and unexpected downer.  Not many people were shopping Havana.  Everyone was at the malls.

John went to bed about 7:30 p.m., which meant he woke up around 2:30 and couldn't go back to sleep.  He walked laps around the house until he wore himself out, then went back to bed.  His morning was emotional.  He was still tired, the incision had leaked yellow again, and he was weepy. 
I never know what to expect with John because he is just like a kid when it comes to gifts.  He gave me my Christmas present after we finished breakfast.  It was an enlargement of a picture I took on our honeymoon to Cumberland Island in September!

A little backstory and explanation:
When we decided to get married, my friend, Kelly, gave us a set of little rubber duckies; a bride and groom.  I sent them on a honeymoon to Kiev at spring break with my friend, Cheryl.  They ride in my car; were at our wedding ceremony at Oven Park, went on our honeymoon to Cumberland Is.  John made fun of me taking their pictures....with horses in the background; with the Dungeness ruins; with the marsh as a backdrop; on the rail of the dock where we caught the ferry to the island.  This is the picture he chose.  He wanted a gift that was perfect and personal to us, and saw the picture on his computer recently.  Perfect.  "You've had them with us all the time," he said.  And it's a great picture.  No one else would 'get it' but we do.  Well, family and a few close friends know about the ducks. 

and here it is!

We're putting the gauze pad over the tumor, and now using an ace bandage to wrap around John's head to keep the pad on.  The sticky bandages don't work anymore, partly because the tumor is so big, and partly because a bigger pad is in his hair and pulls when you take it off.  He feels more secure with the ace.  Today the gauze had quite a bit of yellow drainage on it, and the incision had a nickle-sized dried yellow glob of drainage.  John wants me to call the Hospice nurse tomorrow and let them know.  Not that they need to visit, just let someone know.  Not sure if it's brain fluid or infection. 

The preacher's sermon this morning was on Jesus and how he gives life.  Ironic on the surface, if you took it to mean just a fuller life on earth.  And I remember what John is always telling me; I'm not really dying.  I'll be alive forevermore with Christ, which is the life Jesus gives.  Eternal life in him.  I found my mind wandering to death certificates and how many copies I'll need.

Have a list of errands to run tomorrow so I can be home (!) the rest of the holiday/vacation.