The Scott Times

When Sammy’s mom dropped off our requests from the warehouse store, Lew was eating a bowl of soup.  He struggled to his feet for a hug and was pleasant for a moment.

Later, when another friend called to ask if she could come by for a short visit, Lew quickly said, “Yes.”  When she arrived, Lew came out wearing two pairs of jeans.  He greeted her with spread arms ready for a hug.  Then he began wandering around the house looking for something.  When he spoke, he mumbled, his words slightly slurred.  He didn’t always make sense.

A few hours later, I was on the phone to Hospice, hysterical, wanting help with Lew.  I had just stopped him from peeing in the closet.  He was genuinely surprised that we had moved the bathroom.  I took the clock away from him before he filled it with water.  While I was on the phone, he was sitting on the bathroom floor playing with the toilet.

It seemed to take forever for the nurse to arrive.  Probably because we were no longer in Mint Hill.  We were at a Comfort Inn in Tacoma, WA.  Three of his co-workers were with us and they were having a spirited conversation about whatever it was that they were working on.  They closed themselves up in the dark closet for a few minutes and seemed relieved when I opened the door and let the light in.

By the time the nurse arrived, Lew was wearing only his t-shirt.  He changed his underwear several times.  I found one pair in the shower.  Another was in the bathroom trash can.  Three were in the hamper . . .

The nurse gave Lew a sedative.  While waiting for it to take effect, he explained “Terminal Restlessness.”

From  Hospice Patients Alliance:

As the terminally ill near death, body organs and systems begin to fail to a greater and greater degree. Kidneys stop producing as much urine and function poorly, the liver and other organs also start to shut down. Waste products from the cells and tissues of the body begin to build up in the tissue spaces and blood stream. Biological and chemical balance is lost. The pH in the blood and other areas may change dramatically. In many patients, these changes alone may account for restlessness and agitation that may be quite severe.

And from Clare White, Mary Ann McCann, Neil Jackson. Journal of Palliative Medicine. April 2007, 10(2): 345-351. doi:10.1089/jpm.2006.0112:

The symptoms of terminal restlessness include irritability, anxiety, unease, distress, inattention, hallucinations, and paranoia.  The signs include restlessness, fidgeting, purposeless yet coordinated movements, tossing and turning, trying to get out of bed, moaning, grimacing, jerking, twitching, myoclonus, confusion, picking at sheets, cognitive impairment and aggression.

It seemed to take a very long time for the sedative to kick in.  By the time Lew got into bed, the nurse had to lift Lew’s legs onto the bed and move Lew’s head onto the pillow.  He was picking at the sheets.  I crawled in beside him and held him as he tried to get back out of bed.  His arms jerked and twitched.  You would think that after two and a half years, there would be no tears left.

Lew woke around 3:30am needing to go to the bathroom.  I helped him up.  He seemed light as tissue paper as I helped him into the bathroom.  I neglected to notice that the toilet had been jammed with much too much toilet paper earlier in the evening.  When he was done, he wanted to shave.  I played upon his feelings of guilt and pressed him to go back to bed, that I needed the sleep.

I didn’t sleep much.  My blood pressure was high enough for me to be aware of it — I was afraid if I laid my head on the pillow, I’d have a stroke.  I sat listening to Lew’s breathing, as it slowed, pausing for long periods of time.  Just the same way Mom’s breathing got just before she died.

By the time Lew’s regular nurse and doctor arrived, Lew had gotten three doses of the sedative and nothing else.  Lew woke and was alert during their visit.  He knew who he was, where he was, and could answer complicated questions about his health history.  He said he was in no pain and wasn’t the least bit nauseous.  The three of us (not including Lew) decided that Lew was over medicated.  Almost everything was dropped and only the sedative remains (along with his blood pressure meds, etc.).

As I write this, its eight hours later.  Lew is sound asleep, stirring only for quick trips to the bathroom.  He is walking as steady as possible for a person who hasn’t been out of bed in 24 hours, hasn’t eaten or had much to drink.  The doctor and nurse stressed that Lew needs to be kept on the same dosage of the drug at regular intervals so that he doesn’t have a rebound effect and go into intense pain.

For those of you who have a particular interest — one of the patches has been removed.  Its safe to nibble on his left ear now.

Its not fair!  Its just not fair!  How come Lew gets to spend our Anniversary traveling the world in a yellow submarine while I’m stuck landlocked?

Okay, I’ll admit it, I’m not willing to trade places with him.  He was still tossing his cookies this morning.  A week ago, we kept track of his meds via a marker board on the refrigerator.  It worked well with the box that held a week’s worth of pills in small dividers.  Then earlier this week, I had to stop using the dispenser because his meds were changing too frequently.  A few days later, the refrigerator list wasn’t good enough to keep me straight on when Lew needed what.  I needed the computer when his meds changed daily.  Yesterday and today, his meds have changed during the day.  Depending on how he’s doing in an hour, they may change yet again.

Lew did great for about an hour and a half this afternoon.  I just ignored him while he chatted away, apparently asleep with his eyes open.  He felt good enough to eat about a third of a bowl of chicken soup.  And, he chatted away about the group of men outside in the yard.  (Nope, not there.) Then he alerted me to the hummingbird on the bedroom window feeder.  “Is it still there?”  (I didn’t see it.) But it didn’t take long before he started complaining about the nausea increasing.

A nurse will probably need to come by to evaluate him again this afternoon and jack up his meds some more.  I’m really glad that Hospice considers nausea and dry heaves to have a significant impact on quality of life.

Later . . .

Lew decided that he could wait until Monday to see a Hospice nurse.  I’m keeping my fingers crossed that he’ll be okay in the morning.  He seems to be trying to take on more responsibility for his own care.  Humm . . .  I’m not sure how I feel about that.  His mental state has improved enough that he is aware of how messed up he is.  That’s a big help!  I just need to remind him of it every once in a while.

I’ve just got to giggle.  Lew’s asleep and talking away.  Just chattering.  He was talking about hard drives for a while.  I’m not sure what he’s talking about now.  Just chattering away.  I do have to admit though, I didn’t find it so cute at 3:00 in the morning when he wanted me to participate in the conversation.

Thanks for all the anniversary greetings!  We really enjoyed them!

Again, this morning, I woke to the sound of Lew in the bathroom.  He’s got a patch behind both ears now.  A pill goes under his tongue on a schedule.  And one gets shoved . . .  At one point, he just sat up in bed and had the dry heaves without trying to get to the bathroom.

Lew has developed this very strange habit.  When he wakes up, he asks me what day it is.

Me:  Friday.

He:  No.  Is it the 30th?

Me:  No, its May 1st.

Then he said something that absolutely shocked me!  He said he was holding out for our anniversary.  I really was surprised.  I would have bet the farm that he had no idea when our anniversary is.  That’s the most romantic thing he’s said in 34 years!

Our 34th anniversary is Sunday, May 3rd.

Yesterday, Lew seemed more tired than usual.  He took a short cut to end our walk in the park in the morning.  He was back in bed shortly after we got home.  After a visit with his Hospice nurse, he was back in bed for most of the afternoon.

I woke at 4:00 this morning to the sound of retching.  It continued until around 10:00.  A phone call to Hospice and Lew’s nurse called back within just a couple of minutes.  Nurse Amy rushed out with a patch for behind Lew’s ear.  We learned that a prescription we’ve had in the house for years, also was good for settling the stomach.  That gets stuck under Lew’s tongue every few hours until the patch kicks in.  She left another medication, that Lew can’t throw up, to use if he needs it.

He’s slept all day.  I woke him once to give him his other meds crushed and dissolved in water.  They tasted so bad he almost . . .  I’m not sure how I’m going to get his evening meds in him.  He doesn’t want to be going cold turkey while he’s already so sick.

And, I have to get his anti-Shingles pill in him.  Yes, he’s been healing very nicely.  Other than scratching at his scabs in his sleep, he’s done better than expected.  According to Hospice Nurse Amy, they see a lot of Shingles with cancer.  (Like cancer isn’t enough misery on its own.)

Its now late at night.  I managed to catch Lew on his way back from the bathroom and asked him to take his pills.  He said, “More pills?” like a small child who doesn’t want to take any more pills ever again.  Sometimes this caregiving stuff gets really hard.  I know he’s tired.  He’s been through so much.  He’s been so sick for so long.

I’m sorry.  Its late.  I’m tired.  I get this way at night sometimes.

This is a post I started days ago, but never finished.  Things are changing, but until I write another update . . .

Lew thought he was being thoughtful early Sunday morning.  He got up quietly.  He dressed without waking me.  And he and Benny slipped out to the park, letting me sleep in.

I woke with a start.  I heard a key in the front door lock!  Holy cow!  Lew’s trying to sneak out without me!  Can I throw some clothes on fast enough to stop him?!  I looked at the clock.  (Expletive deleted!) He’s coming home from the park.

I went out to the kitchen.  Lew was stirring sweetener into a cup of McDonald’s coffee.  I spun around, holding my anger.  After I had dressed and calmed down slightly, I said, “I’m furious with you.  We agreed that you weren’t going to drive for at least another week.  I want your car keys.”  Much to my surprise, Lew was totally cooperative.  He had forgotten.  We had had a great week — Lew getting chauffeured everywhere in the big fancy new van.  I was delighted to meet his park friends (even though it was obscenely early in the morning).  I got slimmed by King (a BIG bull dog), made friends with Newman (he has coloring similar to Marley’s), and was delighted to see Kaska remembered me (much to her Daddy’s dismay, she left muddy footprints all the way up my front).

We’re still in shock — the difference Hospice makes.  Within days, they had Lew’s nausea under control.  Both it and the pain are now just background noise.  In the first five days, nurses had visited three times and a social worker once.  The days in between, they called to see how Lew was doing.  Meds and supplies are delivered.  And, they call back within 15 minutes!  Even over the weekend!  And nights too!  Man, am I going to be spoiled (I almost feel sorry for any doctor who has to deal with me after this.).

Speaking of doctors — I had to call and cancel all of Lew’s scheduled doctor appointments.  Some were easier than others.  Dr. Kidney-Prostate has a large practice and more than likely won’t notice that Lew won’t be in for another girly-man shot.  Dr. Dentist’s office didn’t ask why I was canceling, but her voice told me that she knew the reason.  Dr. Radiation’s appointment secretary sounded like she was about to cry when I told her that Lew has gone Hospice.  I’ve lost track — there have been so many doctors.  Sooner or later we’ll get an appointment reminder for an appointment I’ve forgotten to cancel.

Oh, I’m skipping around, aren’t I?

So, Lew doesn’t have a firm grasp on why he shouldn’t drive.  He keeps telling me that he isn’t very drowsy anymore.  But, he’s starting to know that he’s really messed up in the head.  While we were eating dinner, I watched as he repeatedly tried to stab a piece.  When he realized what he was doing, he complained that his fork wasn’t long enough (No, he wasn’t serious.).  Earlier, I had held the back of his waistband to steady him while he made himself a cup of tea (He knew he was off balance but couldn’t get himself straightened out.).

When Lew grabbed the oven door handle to balance, I held my breath.  The door swung open and closed as he staggered one way and then the other.  I was on the other side of the counter and knew there was no way I could get to him in time if he began to fall.

After dinner, he apologized for leaving all the dishes for me to clean up.  I tried to assure him that its easier for me to clean up than it is to worry that he’s going to fall.  “If you fall and break your hip . . . “  I didn’t have to finish the sentence.  I promised Lew a long time ago that I would do everything that I could to see that he gets to die at home.  But Lew knows that if I can’t take care of him, we won’t have a choice.  Now that Lew’s signed up with Hospice, I’m a lot more confident that we’ll be able to make that happen.

Okay people. Calm down. You’re freaking out my husband. Just because Lew has signed on with Hospice doesn’t mean he’s dying any faster than he was a week ago.

Those of you who have been along with us on this awful roller coaster ride for the last two and a half years can skip this post. You know what its about — you could probably even write it.

On the other hand, if you’ve just figured out that Lew has terminal cancer . . . well . . . you need to know that there are rules around here.

1.  Don’t drop in! Use your mobile phone and call before you pull in the driveway and get Benny to barking.

2.  Don’t ask if you can come visit two weeks from last Thursday. My Magic 8-Ball won’t tell me if Lew will be up for visitors two hours from now.

3.  Call as you are ready to walk out the door and come directly here. Don’t run a few errands on the way — Lew may be too tired by the time you get here.

4.  Don’t come to pay your last respects. Besides being too creepy for words, Lew won’t believe that you respect him now if you haven’t in the past.

5.  Don’t come to say, “Good Bye,” unless you are dying and feel an uncontrollable need (There are drugs for that!).

6.  Guys — no shaking hands! You’ll crush his. Gentle hugs are always welcome. (Don’t forget to hug Benny too, he gets jealous.)

7.  Don’t tell Lew that he looks so good. He hates that almost as much as I hate being told I’m courageous. Anyone who says to me, “I know how you feel,” will be brusquely shown the door.

8.  Remember, I get tired too. I’m not tidying up for you. I’m not going to entertain you. I’m not gonna get you a glass of water.

9.  In case you haven’t figured it out — come healthy. Lew will catch any bug you bring into this house. Don’t make him more miserable than he already is!

10.  Bring a joke. Tell a story. Gossip. No crying. No sobbing. No bawling. No wailing. No beating your breast with grief. No rending an outer garment. No outpourings of grief.

With all the goings on around here, we forgot about something very near and dear to us. Its Hummingbird Season! We’re weeks late in putting out our feeders. I made up a batch of nectar and Lew hung two feeders yesterday morning. Well . . . they must have been in the trees watching. We saw at least three hummingbirds in just the first couple of hours.

If you’re looking for the link to more links, click here.

Lew signed the papers for Hospice Friday morning, so its official.  Hit us both hard.

And from the “Its Always Something” file — Lew came down with Shingles this morning.  So, if you haven’t had Chicken Pox, stay away!