The Scott Times

Benny beat me down the hall, but not by much. Lew’s legs were in the hallway, his body in the bathroom. He said he wasn’t hurt but couldn’t move at first. After resting a few minutes, he managed to sit up on the floor. After a few more minutes, while I yanked up on the back of his pants he pulled himself up onto the throne. When he seemed steady, I went after my old manual wheelchair — he couldn’t walk himself back to bed.

Sunday morning, we sat on the patio enjoying the sunshine and the birds chirping. The hummingbirds buzzed around us. Benny was stretched out in the grass.

Lew grew tired and wanted to nap. He was shaking from weakness. Back in bed, he said, “I’m scared.” I held his hand while he fell asleep. I sat watching as his breath grew shallow. At 6:30, I put my hand on his chest, feeling for just one more breath. He was still.

Benny sat in the doorway, smiling, looking relived and relaxed.

The Hospice nurse arrived, struggled to remove Lew’s jacket to check his blood pressure. She listened to his chest.

7:43pm, Sunday, June 7, 2009

I watched and made small talk as she went through Lew’s basket of drugs, removing many of them. She poured vinegar over them to “neutralize” them. Then poured the mix into a zip-lock bag with kitty litter. She kneaded the bag to ensure the kitty litter absorbed all the drugs. I protested the waste of expensive medications. Surely the Hospice nurses knew of many people who would be very grateful to receive Lew’s left-overs. As much as they would like to recycle, they can’t be caught with drugs in their trunks.

I was surprised by the hearse, a small SUV, Robin’s egg blue. They try to be “inconspicuous.” (A slight reminder, I made Lew’s “arrangements” a while back. I’m really glad I did and highly recommend it to everyone else. It made this week much easier.)

I didn’t make any calls Sunday night. I didn’t ask Hospice to make any calls. I wanted some alone time before the hustle and bustle began.

The phone rang early Monday morning. I let the answering machine get it. Lew’s CNA hadn’t gotten the word — she was on her way to help Lew with his bath. The doorbell rang. It was Lew’s regular nurse. She had gotten the word and stopped in to pay her respects. She called the CNA to tell her. She was about to pull in the driveway. I thanked them both and said good-bye.

The medical supply company picked-up the hospital bed. Lisa rushed over and filled the gaping space in the bedroom with our Queen sized bed. (The junk room looks so much larger without the bed in it.)

My brother’s younger daughter helped me eat a dozen chocolate glazed Krispy Kremes while we discussed her next tattoo late into the night. The rest of the family came to visit after they got their car back.

Lew was cremated on Tuesday. His ashes will be scattered over a lake. He didn’t want a service.

If you would like to make a donation in his honor, Habitat or the MS Society will take your money. I won’t slam the door if you send flowers.

Lew's obits are at:
http://www.legacy.com/obituaries/Charlotte/obituary.aspx?n=George-Lewis-Scott&pid=128210520
http://www.legacy.com/obituaries/Charlotte/obituary.aspx?n=George-Lewis-Scott&pid=128282562

I don’t know how I’m doing. I’m relived and glad its finally over. But I can’t say the “D” word without falling apart. I seem to forget sometimes and go to the bedroom to repeat the neighbor’s news to Lew. I don’t think it has hit me yet. Benny seems to be doing about the same. Occasionally, he looks at the bed expecting to see Lew and then he goes, “Oh yeah.” There’s no sign of distress.

Yes, I’m planning to stay in the house — always have. I can’t imagine living anywhere else.

Yes, I’ll start a new blog at some point in time. It’s likely to be “Adventures with Benny.” I’ll put the link on this site’s main page (http://RideMaps.com) when I’m ready. But right now, I think I want to sleep for about three months.

Lew cries a lot. He apologizes for what he’s put me through. The evil being inside me wants to sew him up inside the bed sheets and take the cast iron frying pan to his sorry self. I thanked him for the two and a half years of guilt-free chocolate consumption.

Lew weighs less than 100 pounds now.

My brother called, concerned that the sheriff would answer the phone. He didn’t say, but I assume he wasn’t too thrilled with the possibility I’d ask him to put up my bail money for going postal at the DMV.

I woke to the 5:00am alarm, gave Lew his meds and couldn’t get back to sleep. I wasn’t unhappy about it. I got up at 7:00. Fed Benny. Had breakfast.

After what seemed like seven years of listening to the recorded message telling me to stay on the line, a real person answered the phone in Raleigh. And I do mean, a REAL person. And, amazingly, she believed me when I told her that I hadn’t gotten their previous mail. She is sending the form again and she extended the deadline to July 1. AND, she said if I didn’t get the forms this time, they’d fax them directly to my doctor. I couldn’t believe it! That’s it. Here on out, its just a matter of forwarding the form to my neurologist. He’ll fill it out, basically the same way he did two years ago, and send it to Raleigh. Then I’ll get a letter from Raleigh saying I still have the “privilege” of driving for another two years.

For those of you who haven’t followed my previous adventures with the DMV . . . A while back, the state legislators decided that there needed to be a way to get the old codgers off the roads when they no longer should be driving. In an effort to make it fair, and not be accused of age discrimination, they wrote the law saying the DMV could require any individual to have their doctor say they are capable of driving in a safe manner. The form that was designed for the doctor to fill out ended up being seven pages! (Find a doctor who isn’t going to charge for filling that out!)

While the legislature was well intentioned, unfortunately, they left it up to the individual DMV examiners to decide who needed to fill out the forms. The reality of the situation, in my opinion, only people with obvious impairments are required to jump through the medical hoops. I really don’t think that its done anything to make our roads any safer. And yeah, maybe some day (when I’m feeling self-destructive), I’ll force the DMV’s hand and they’ll have to come up with some statistics proving that they require the average Joe to fill out the forms too.

In the meantime, I’m very thankful I’ve been seeing the same doctor for years and he doesn’t have a problem with filling out the form for me.

Poor camel, broke her back.

The mailman brought the last straw today.

I was out in the driveway, just moved my van out of the garage so I could get to the wood scraps.  The signs we had with our house numbers could barely be read — if you knew what they said.  It was past time to replace them with the fire department’s reflective numbers.  I was trying to figure out the easiest way to put the new signs up (anything but drilling into the brick), when the mailman pulled up.  I tucked it under my arm and looked around the garage.  Realizing that I’d loose the mail if I carried it around much longer, I took it inside.

Some time later, after drilling holes in the signs to match the holes from the old signs, I opened the mail.

I didn’t think there was anything special about the letter from the DMV, had to be paperwork for my van.  Turned out — my driver’s license is being revoked effective June 11.  The reason — “Failure to submit medical report.”  Uhhh . . .  What medical report?  The form they’ve sent me before renewing my license?  Maybe.  Probably.  But they didn’t send me a form.  Or, I didn’t get the form they sent.  Doesn’t matter what happened.  The result — I’ve got to jump through hoops for the DMV.

I stayed as calm as I could for as long as I could — until Lew fell asleep.  Then I quietly slipped out to the kitchen.  That was it.  I had finally reached my limit and came unglued.  I was still crying when Lew came out, “Are you okay?  What’s wrong?”  He had already forgotten.

“I can’t take any more crap!  I’ve had enough!  I can’t handle any more shit!” and I ran away from him to close the world off in the bathroom.

I can’t believe I said that to Lew.  He was trying to comfort me when I left the room, shutting him out.  Later, I told him that he better not die tonight.  I don’t think he heard me.  I’ll probably stay awake all night listening to his breathing.

Oops.  Things are back to normal (our normal).  Lew just got up to look for the “big guns.”  Seems he’s building cannons in his dreams.  He couldn’t tell me who he was selling them to, though.

Lew was standing in the kitchen doorway when I backed into the garage.  I had just done a drive-thru at the grocery store.  “I’m confused,” he began.  My heart soared.  Lew has started beginning a lot of questions with that phrase.  And it makes me happy.  Just a few weeks ago, he argued with me every time I tried to talk about with him about being a little “off.”  Now, he knows that he gets confused and is accepting the idea of having someone looking after him all the time.

He continued, “The mailman came while you were gone.  We were supposed to ask him something about the tabs on the chicken.”  Yes, he was confused.

The hospital bed was delivered Monday afternoon.  The junk room looks much smaller with the Queen bed on edge against a bookcase.  Unfortunately, the bed arrived after Lew had had a bath and his nurse had been here.  He was tired and stressed from the day’s activities.  So . . . he didn’t understand how to work the controls on the bed.  After a bit, I realized that he couldn’t see the pictures on the remote and put big labels on it.  That helped.  But he still confused the head of the bed with the foot.  (Yes, I tried telling him that it meant his head and his feet.) He caught on the next day when he was more rested.

A few days ago, we went around and around about the temperature in the house.  Lew wanted to turn the heat on.  I asked him to tell me what he thought the temperature was in the house.  His reply, “10:53.”  When I asked him what time it was, he said, “Its the same.”  I told him that it couldn’t be the same.  He looked at his watch and told me it was “Twelve degrees.  No, its 15 degrees.  It keeps changing!”  He was looking at the seconds on his digital watch.

No, he’s not like that all the time.  Most of the time he’s totally together.  I know when he’s just waking up, he may confuse his dreams with reality — he’ll be fine in a few minutes.  But if something sets off his confusion the rest of the time, I don’t know what it is.

Other than that, he’s doing pretty good.  We seem to have gotten a handle on his meds and have his pain and nausea under control.  Something I’ll pass along that worked — instead of taking drugs on an “as needed” basis, he’s on a schedule — around the clock.  I have three alarm clocks in the bedroom set for intervals during the night.  His most important time of the day — 5:00am.  He was getting up with the heaves every morning.  Now, I wake him at 5:00 and pour a bunch of stuff in him and let him go back to sleep.  When he wakes later, he’s fine — no nausea!

They had digital alarm clocks on sale at the drug store.  I bought two.  And I bought an analog alarm clock to replace my travel alarm that I broke a week ago (It was an accident, I swear.  I knocked it on the floor while I was trying to turn it off.  I didn’t throw it.).  So, with all these alarm clocks, I’ve decided, contrary to what you hear on TV, analog is better than digital.  With an analog clock, I can set the alarm to go off at 5:00am and 5:00pm!  I don’t need two clocks to do the task of one.

So . . . there’s not a whole lot more.  I’ve taken Benny to the park a few times.  Unfortunately, I kicked up enough dirt that my chair is squeaking now.  So, now I’ve got to learn how to get the dirt out of all the joints and bearings.

I haven’t been making an effort to get out of the house.  This week I had a doctor’s appointment.  Hospice arranged for a stranger to “visit” with Lew while I was gone.  He did exactly what his nurse told him not to do — he sat in the living room and visited.  Since I was gone so long, he finally pooped out and went to bed.  But he was really tired that evening.

Don’t bother, everyone else has already lectured me about “taking care of myself.”  I’ll work on it.  I promise.

If I hadn’t seen it, I never would have believed it.  Lew enjoyed his bath this morning!  It was like a day at the spa — only shorter.  He said his lower legs haven’t been so clean in ages.  He got to sit down and not move a muscle while in the shower.  He got dried while sitting down.  And he got his hair blow dried and combed (but not just right — he had to do something for himself).  Even shaved.  And he enjoyed every minute of it.  And he made plans to get a bath three times next week!

I’m thrilled!  I don’t have to worry about him while he’s trying to do it himself.  Last time he showered, he had to lie down and rest before drying his hair.  He was exhausted by the time he finished shaving.  Today, he looked refreshed, relaxed, and very happy.

Today was also a day of realization.  I told the CNA that Lew could explain how to work the shower controls or work them himself.  A few minutes later, I was saying, “Turn the top one clockwise.  Now turn the bottom one counter-clockwise.”  I assume that it was because he was in a new situation and a bit overwhelmed.

Then Lew got all worried — a screw fell out of one of the shower knobs.  I told him not to worry about it, that I’d take care of it when he was all done in the bathroom.  Well . . . there was no screw on the floor.  No hole without a screw.  Teasing, Lew asked, “Okay if I show you where the screw came out?”  He was flabbergasted when he couldn’t find the hole missing a screw.

“Honey, I guess now is a good time to have a conversation.  I have a doctor’s appointment on Tuesday.  I’ve asked Hospice to ask a volunteer to sit with you while I’m gone.”  Lew agreed that it was a good idea to have someone here with him while I’m gone.  I’m okay with leaving him alone while I drive through at the drug store or grocery store.  But if I’m going to be anywhere where I might be gone more than a few minutes . . .

I had to go over to our car insurance office to get photos taken of my van this afternoon.  Before I left, I asked Lew what his name is and where he thought he was.  He answered correctly.  Then I asked him how he would call me if he needed me.  He answered correctly — he would get my cell phone number off the refrigerator door.  (He doesn’t remember how to use the memory buttons on our home phones.)  But, I have to admit, I was in kind of a hurry to get back home.

So, gang, you’ve been offering to help — its time.  If you’d like to sit with Lew while I get out of the house, bring a book or your knitting or whatever.  Lew will likely sleep most of the time.  He may want to get up — its okay.  He can make himself a cup of tea.  If he wants to eat, I’ll be amazed.  He just doesn’t need to be repairing anything.  So, if you’d like something easy to do, please drop me an email and let me know when you’re available.  Thank You!

Nurse Hospice has been asking Lew if he wants a hospital bed.  While trying to arrange his pillows just right this afternoon, he told me he was ready.  Now, what to do with the queen sized bed?

I know I’ve quoted Garrison Keillor before:

Nothing bad ever happens to a writer;
Its all material.

And I’ve probably written the same thing:

I could do with a little less material.

This last week has been fairly quiet.  Lew has been himself, mostly.  But he’s sliding quickly.  He’s in bed, sleeping most of the day.  Adjusting his meds has helped straighten his head immensely, but now he feels the nerve damage left by the shingles.  Walking is very painful.  He hasn’t had the dry heaves for three days — a tremendous blessing.

I left Benny with Lew this morning, confident that Lew wouldn’t get into trouble as long as Benny “need looking after.”  I thought I had stepped into the Twilight Zone — there were only two people at the counter when I got to the DMV office to register my new van!  Six clerks and only two customers!

Back at home . . .  I’ve arranged for someone from Hospice to come tomorrow to help Lew bathe.  I flooded the bathroom yesterday, so I set out to clear the clog this afternoon.  After asking Lew where the hose was to hook up to the faucet, I retrieved it from the garage.  While out there, I went to set the garbage cans back upright (they had just been emptied) and I heard Lew in the garage — he was looking for the hose.

Back in the house, with Lew back in bed, I took the screws out of the doohickey and fished out a big glob of my hair.  A few minutes later, Lew decided I wasn’t making the appropriate noises and came to look over my shoulder.  Next thing, he was down on the shower floor “helping.”  I watched as he struggled back up to his feet.  And I lost it.  I blew up in his face.  My “forgive the dying man” attitude was completely shattered that instant.  Lew was freezing cold and shaking from weakness and not understanding why I didn’t want him helping.

A few minutes later, after slamming a few doors, I was lying in bed, my head on his shoulder, sobbing and telling him how much I hate him for getting so sick.  He felt terrible and apologized for getting in the way and for being so confused.  Then he started telling me how much more work it was to have to fill out all the forms to get a plane ticket.  He was gone again, back at work again.

I had convinced myself that the confusion had been from too many drugs.  Now I look at him, his skin hangs in folds — he weighs less than 110.  He walks, shuffling.  His voice is weak and scratchy.  His arms brush against something and he bruises and bleeds.

But, tomorrow is another day.  And tomorrow will bring new material — Lew’s first time bathing with someone other than me.