Saturday, February 12, 2011

roller coaster

Today is Saturday.  Yesterday was Friday.  Rough Thursday night, early start to Friday.  Back to bed after b'fast.   Home health lady came.  We enjoyed her very much.  She spent a long time working on getting the gunk out of John's hair.  Marvin visited again.  John always enjoys when he comes.  Mama came, then Miss Kathy from school, and her sister, Pastor from Havana and his wife.  She made chicken and dumplins and brought a warm bowl for our dinner. 

And it began again.  Fidgets, mumbling, leg jerks.  Took a pill, then another.  Fought the battle for three hours.  I called Hospice at 11:30 and within 10 minutes, John was finally asleep.  The nurse came and took out a relaxer from our "comfort kit."  Gave John 2 doses during the night.  He fussed with his legs again during the night.  Has now slept almost all day.  It's 4 p.m. Saturday.

"Grandma" Causey from down the road brought him a burger and Valentine balloon, and me a flower to put in the yard.  Mama is back, and Sharon came to cut John's hair, but he's been asleep the whole time.  John's "pull-ups" are not holding the flood of urine.  Mama and I changed his clothes and sheets.  His home health lady would laugh at the time we had getting the sheets changed.  Keeping the relaxer in his system so he'll stay relaxed.

PooPotpouri is a great product for "that" smell.  I put it in the bedside potty and it covers odors. 
John finally woke up tonight around 6:30.
wide awake
He fussed around until time for his med.  With it he ate a hamburger, banana, cookie, and diet coke.  Mama picked up the namebrand Depends, and it worked much better tonight.  He lets out such a flood that the pull-ups are not holding it all.  Hopefully these will work better.

John has spoken very few words today.  Even awake he isn't talking voluntarily.  The responses he does give are quiet, short, and his usual weird language.  His eyes focus for the most part, but when he's about to drift off the sleep, the blank stare comes back.  He hasn't even tried to get out of bed today.  This is the first day he's never gotten up.  Mama and I decided to not put pajama bottoms back on him.  It wears out John and me trying to get them under his bottom after having done the same with the pull-ups.  He hasn't complained or acknowledged that he notices.    Will talk with the nurse about getting him a catheter.  She offered it as an option for "one day" and I know John hates them, but it would save a lot of grief for us both.  The nurse can break the news to him!

It's been a quiet, sort of sad day.  Another major marker passed. 

Friday, February 11, 2011

boxers or briefs? depends

woo hoo
We slept until 4:30 a.m. then until 6:30.  It's 9 a.m. now and it's already been a full day.  At 6:30, John needed to potty.  He sat and sat again but nothing happened.  When I started pulling up his pants, he touched them and said something was *jibberish*.
I felt of them and they were wet. 
oh we go
We changed into dry stuff.  I asked him if he'd like to try one of the depends we had from Christmas.  He said we might better.
He got back in bed and needed to go again.  I could tell an urgency so we got him up quickly, and as he was pulling down his pants, he was saying oh, oh, oh.  He was urinating a steady stream as he stood there.  Luckily, almost every drop landed in the depends.
Cleaned him up again, got back in bed, ate 2 pieces of toast and rolled over to sleep.  I started on my valentine cards for the kids but could hardly keep my eyes open.  Took a nice nap.  John's still snoring. 
waiting for the home health lady to call

Thursday, February 10, 2011

two week notice

John slept until 4:30 this morning!  He slept most of the day.
A lady from the Dept. of Revenue came to audit and certify the sale of his business, another Hospice nurse made a follow-up visit, Havana pastor, Sarah from school, and Mama and
Daddy all came by today.  Plus, the hospital bed was delivered.  I put it next to our bed.  Now I can be in the same room with John during the night.  He's taken only one muscle relaxer today.

His eyes aren't focusing on much and he's urinated once.  He's tried 3 times unsuccessfully.
victory on the 4th try

The Pastor had another good suggestion.  If I start John in the bed with the rails up, he won't wonder later why I start putting them up.  If that's the way at the beginning, there won't be a change later.  John only complained about the rails once during the tries to urinate.  He would sit on the pot for 5 minutes, get back in bed for 2 minutes, get up again to try.  After the second time of trying to get up with the rail in the way, he shook it and asked why.  I didn't answer him, just put it down and helped him up. 

For me, there will be two dreaded markers.  The first is when he can't say "I love you" anymore.  In the past week, he has said it correctly about 60% of the time.  When he messes up, it's "Good morning" or "Thank you".  Most of the time he knows he's said it wrong, and will grin or roll his eyes.  I'll say, "Yeah, that, too."

The other marker is when he won't remember my name.  He's called me Mom several times, but it's usually when he's tired.  One time I was trying to help him do something and he said, "Mom, Mom, Mom."  I replied, "Laura."  He said, "I meant please, please, please."

good answer


Last night was some better.  John slept until 3:30 but was up the rest of the night with leg jerks.  Our Hospice nurse called this morning to say she was trying to get up with the doctor to get the muscle relaxer ordered.  I went to lunch with my two teacher friends, and Mama stayed with John.  He unloaded after almost three days of no bowel movements.  He urinated less today.  When he does go, the color is almost orange.

One of the ladies at lunch experienced the loss of her husband to cancer.  It was encouraging to see someone who survived the ordeal.

I ran errands.  Mama called to let me know John was in extreme pain with his legs.  She rubbed them, held his hand.  He cried.
I picked up the new med.  I fed him, literally, and he took the pill.  It helped with the pain, but he still jerks.  And his hands shake like crazy. 

My friend, Cheryl, came bearing key lime pie.  John was in bed but about anhour into her visit, decided to join us in the living room.  He didn't want help coming in but with me beside and Cheryl behind, about five minutes later, he was on the couch.
John was restless the whole time.  Couldn't get still or comfortable.  We put him in a rolling chair and took him back to bed.  I noticed his bandage was quite bloody.  I decided to call the Hospice on-call nurse.

The nurse was wonderful.  I told her about the hard time John has trying to walk, he gets hot often, his urine color, shaking hands and jerking legs.  She said he is transitioning.  The word hit hard, but with relief.  It was good to know.  When I asked her about how long, she said probably two weeks.  She watched me change the bandage.  The bleeding had stopped but he still jerked and shook.  We gave him one more muscle relaxer.  I asked her if I should tell John that he is transitioning.  She said if he asked, tell him what I thought he could handle.  I heard him get up and went in the room.  He used the bedside potty and wanted to know why "she" was here.  I said mostly for me but to check his head and legs.  He reminded me that he  wouldn't be here much longer.  I told him that was what the nurse said, too.  "That's good news," he added.

I'm relieved to know and have a timeframe, even if loose.  So thankful Cheryl was here.  Her dad died from a brain tumor and she could see "markers" in John.  He's in bed now but still jerking.  Doesn't seem to be in pain though. 

The nurse is going to talk to our regular nurse about getting John a hospital bed and home health care to bathe and change his clothes; etc.  I'll be glad for the help.
think he will be, too

Tuesday, February 8, 2011

forgetting to remember

How do you forget how to walk over night?  John pulls up with his walker and stands there, looking at his feet.  I ask him what's going on and he says he's thinking about what to do.  I tell him to take a big step.  Sometimes he does.  Sometimes it's a short shuffle. 

Last night was awful.  John didn't sleep at all, which meant I didn't sleep much.  His legs jerked, jumped, kicked, and spasmed all night.  He would sigh and roll over.  He even took a total of 4 p.m.'s throughout the night and they didn't phase him.  At 4:30 a.m. I finally went to the couch thinking if I gave him the whole bed, he could stretch out and relax.  That didn't happen either.  He would sit up on the edge of the bed and pull the walker to him.  The sound would wake me up.  I'd go in and check on him and he'd say he wasn't getting up.  This routine went on until daylight.  Finally he fell asleep, in time for breakfast.

He can get to the bedside potty ok by himself.  Drives me nuts but he does it.  He sits there, waiting.  Takes about a minute or so for him to get the flow going. 

After breakfast he rolled over and slept soundly.  Woke up once or twice.  Ate lunch, back to sleep.  Maybe he was so worn out from the night, he didn't twitch.  I took a LONG bubble bath.  Phone rang 4 times and John never woke.  His Hospice nurse came around 2:30.  We woke him up and changed his bandage.  John is having a hard time sitting up.  It's as though he's lost his stomach muscles/core and sways and bobs like a drunk.  The nurse was surprised at how large the bulge is.  She measured it at 6" long and about 3" tall, but it sticks  out an inch at least.  His bp was high for having just woke up.  The bottom number was 90.  Don't remember the top one. 

I bathed him and that was another ordeal.  John could hardly sit up on the bath chair.  Again, the whole core muscle group almost non-existant.  I did a hurry-up bath today.  nap

dinner in the living room
I talked to Sharon on the phone, telling her about the nurse checking with the doctor on getting John something to help him relax to sleep.  I went to the dining room so he didn't have to hear it again, and when I headed back to the living room, I heard the walker, looked through the doorway and John was on the floor in front of the couch.  Got him up fairly quickly and easily.  He gets so aggrevated with himself.  He wouldn't tell me what happened, but I think he fell asleep and rolled off the couch, or either he was reaching to put his water bottle on the coffee table and fell off the couch.  The side of his pajama pants and a spot on the rug were wet.  He stayed and watched tv with me until almost 10 p.m.  His legs were beginning to twitch and move a lot while we sat there.  It was a slow process getting back to the bedroom.  I'm probably not even going in there tonight.  He landed crossways the bed anyway.  I can hear him sighing.  Not sure if he's asleep or not. 

Tomorrow I'm going to lunch with Ann and Ginger, two retired teachers, then Walmart and other errands.  Mama will be with John.  I've told her if he falls to call the local police and they'll send someone to pick him up.   not in the usual police way tho

Monday, February 7, 2011

small world

Before John got sick, we would beebop to J'ville to the discount Christian bookstore, Daytona, the beach.  When he got sick, Daytona was as far as we went--6 hours--and Cumberland Island @ 4 hours, for our honeymoon.  We'd go to Monticello, he'd come to Havana.  Then it was only Havana to Tally, and eventually, staying home but walking the neighborhood.  Yard, down to driveway, inside only, and mostly the livingroom and bedroom.  I know it will one day whittle down to only the bedroom.  our world is shrinking

The last few nights, John has kicked, jumped, marched, wiggled, moaned, and not slept well.  It's been hard to tell if he's doing this in his sleep, too, or if he's awake when it happens.  He said he slept well last night, but he moved the whole time.  I didn't sleep well because every time he moves, I wake up.  On the way to the dining room this morning, John got mad at his walker.  He was grumpy and still tired from the restless night.  At one point, he banged his walker on the floor several times.  I told him not to do that.  He could be mad but don't do that.  He later appologized for it.  We BOTH took a nap after b'fast!  He sat with me in the living room off and on all day.  Mama came over and we watched a movie. 

Daddy sent over some big boards to put under the cushion of the couch where John has wallowed out his side.  He loves the addition.  Gives him more support when trying to get up. 

I got an invitation to my class' Valentine party Monday.  Sent back a favorable reply. 

John watching the Superbowl.  He uses a patch sometimes because he ends up closing his right eye to use his left.  Must be some kind of distraction in the right eye.  Propped up in bed, diet coke in hand.  We enjoyed the commercials especially.