Thursday, January 27, 2011

the days are just packed

John woke up feeling fine the day after the headache.  He didn't use his walker; said he didn't need it.  Bob and Rick came for lunch, and Rick did a look-see under the house, sort of like a check-up.  Things look very good for an almost 60-year old house.  I am going to pursue adding extra supports underneath, especially with the piano weighing so much. 

Mama came over after the guys left.  John enjoys her visits.  Our Hospice nurse popped in with supplies and checked John's vitals.  He was wiped out from our lunch company so she didn't stay long.  I told her I was going to buy a shower chair rather than get one from them.  It's something I can store in the attic easily enough for the next person who may need it.  She suggested we check at Goodwill or another thrift store.  great idea

Walter and Ruby from Havana church brought a big bowl of stew.  Last Wednesday they brought BBQ. 

Today, our Sunday School teacher from Havana came by with diet cokes for John.  He stayed a bit and we talked about computers.  I baked cookies because Sarah was coming by after school.  She stayed for supper.  We had stew and cornbread.  It was great to see her and get caught up on everybody.  I told her we should make it a weekly date.    therapy for us both

Found out for sure that John's dad has leukemia, along with MDS.  If they treat one, the other will kill him.  All they can offer is blood transfusions when he feels bad.  There are no treatments at this point and they gave him 'months, not even a year' to live.  He went home from the hospital today, but has to wear a mask when in public.  This adds another layer to the surreal life we already lead.

I won!  As a 'fan' of Tallahassee Magazine on facebook, I entered my favorite memories of Springtime Tallahassee and they chose mine, along with many others, as a winner.  I get a pass to sit in the reviewing stand for the parade, and my quote and picture will be in the Talla. Mag.  I go to their office for my headshot Tuesday.  hmmmm.....what to wear..........for a headshot :)
My quote was about marching in the parade in high school, then taking Marshall all these years; necklaces, crewes; etc.

Our Godby graduates association has started a facebook page for Cougar Angels; those who have passed away.  The list is too long.  and growing

Tuesday, January 25, 2011

marker day

There will be days when I look back on it all, where I will see turns and changes.  Today will be one of those days.  It started out with John a little weak.  He ate, sat on the couch, then said he needed to go back to bed.  Not sure if he slept, but must have dozed.  My teacher friend, Betsy, called and wanted to drop by soup she made.  We had a good visit.  It was interesting to hear what was going on at school, but more in an observer roll, and leave it at the table when we got up.  Not my problem.  She did have a bit of excellent news, tho.  Our school will be "smart" beginning next year, and phased in over a few years.  Wireless, projected, sound, you name it. 

John wanted me in the room with him.  His head hurt.  I pulled in Sharon's rocking chair from when Marshall was born, a bowl of soup, a book, the phone, and the radio with earbuds, and hunkered down.  I'm learning not to ask him if he wants something or needs anything.  I tell him I'm going to do it or get it.  As with his lunch, when I asked if he wanted to eat, with stomach growling he said no.  I couldn't take it any more and told him I was going to fix him a bowl of soup.  He ate it with several bites of french bread. 

I started reading 2 Corinthians to him.  He enjoys me reading the Bible to him, and I love doing it....for him and for me.  Amazing how many scriptures deal with death, comfort, hope.

I called the Hospice nurse and social worker and asked them not to come today.  John didn't feel like being observed, talked to, or measured.  I told the nurse I think we're ready for a walker.  She said she'd order us one thru the company they use.  Didn't know when it would be delivered.  By then, John was asleep again.  Not much later, I heard a vehicle out front, and there was his walker.  The guy showed me how to work it and suggested I put tennis balls on the legs since we have hard wood floors.  As expected, John said he wouldn't need the walker.

While he was in the bathroom, the preacher from Havana came by.  He and I were in the living room when John tried to get up from the toilet.  He went to his knees.  I called from the hall but he told me to go away, he'd be ok.  I stood there for a while and could hear him trying to get up, bumping the cabinet, wearing himself out.  He wouldn't let me come in and help.  I went back to the living room when I heard him open the door.  John went back to bed, giving his apologies to the preacher.  I told the preacher, "This is where we are right now.  New today, a marker day." 

The preacher had excellent advise for me.  It was probably a good thing John went back to bed so I could be reminded of things I'm learning the hard way.  I told the preacher I sometimes feel guilty for having a friend over or going to town, because John can't go or always enjoy a visit.  He said to give myself permission to take time for me.  If I'm not fed, rested, or well, I can't take care of John.  Take five or ten minutes to pull weeds in the yard or bake something; whatever is therapy for me.  Grab a neighbor walking by and ask them to sit with John for a few minutes while I run to the dollar store or take a walk around the block.  He kept using the word 'caretaker.'  I have always hated that word.  Actually wrote an essay about how I hate that word!  But I am a caretaker.  It was a hard day for me when I realized that.  My friend, Teresa, handed me a card with a caretaker's prayer on it.  I wondered why she was giving it to me because I wasn't a caretaker.  [this was after John's first surgery]  And standing in the hall at church, I realized I was.  The dreaded word meant for old people.  Not me.

At dinner, John and I ate in the living room on the couch.  We watched only a few minutes of tv and he was ready for bed.  His head hurt terribly.  He took 2 p.m.'s and finally fell asleep.  While we were laying there, I reminded him of things we'd done together over the years, like driving to J'ville to buy books and cd's at the discount Christian book store, and eating lunch at the chuckwagon place.  Hiking lots of trails around here; walking the dry lakebed of Cascade Lake, then canoeing it when it filled up again.  Visiting his oldest niece and nephew when they lived here.  John would smile and said he remembered.

He did use the walker to get out of bed twice.  It gives him something to lean on.  The bathroom doorway isn't wide enough to fit the walker thru, dang it.  That's where we really need it most.  I turned it sideways and he used it to get off the toilet.  Not a perfect system but he saw how it helped him.  I took up the rug in the hall, and one in the bathroom.  Hopefully he'll see the support it gives.  I'm not going to give him a choice about using it.  We're there.  Another step down the slippery slope of liquidating life.

Monday, January 24, 2011

and don't call me mom

Learned a good lesson today.  Usually I take my clothes and stuff with me in the bathroom when I get a shower, but this morning.  It was not as cold and I took only my underwear.  No sooner had the shower cut off than I heard a knock at the front door.  I was trapped.  John let them in.  Fortunately I recognized the voice as one of my retired teacher friends--female.  I called her name and she replied.  whew  I told her honestly:  just got out of the shower, running to my room to get dressed.  Take things with you when bathing because these days, you never know.

Went for my 'female' report and it's not great.  He wants to do a procedure that requires 'twilight' [and I don't mean the book or movie].  He wants to go a little further 'up' where he can't see, and take samples.  I asked if we could put it off a couple of months given my 'situation' and he said yes, but not beyond that.  I can't be out of commission.

Ran errands after the dr appt.  Mama stayed with John while I was gone.  The teacher friend who popped in this a.m. came back later with a spaghetti/salad dinner.  She and another retired teacher, Ann, and I are planning lunch in Havana the first week of February.  Can you believe February is almost here??

Yesterday and today John's right side has been very weak.  Tonight he finally went down on his knees in the bathroom.  I knew this was coming.  He didn't fall, just went down slowly.  He told me to go away when I started walking over to him.  I watched from a distance.  He got up and brushed his teeth.  The Hospice nurse is coming tomorrow.  I think I'll call her and see if we can get a walker. 

I used to think in quarters/3 months, because that's about how often John had mri's.  Then it was months; how many months since his last surgery.  And suddenly, how many months does he have left.  Looking back over the last month, I'm amazed at his decline, and now looking at the past week, I'm even more amazed.  I know soon it will be days compared to days.  Month compared to month, week compared to week, days compared to days.  liquidating life

Didn't get any updates on John's dad today.  Must not be anything new. 
When John is really weary, he calls me mom...............
I said, "Laura" when he did it again today.  His reply, "I know.  That's what I said."  At least it's correct in his head.