Oxygen For What Ails You

“Where did the cat go?”  Rich asked.  I looked away from the TV to where he was staring.  We had never shared our home with a cat.  “What cat?”

“The one that was walking around the pictures.”  He pointed to the framed photographs lined up on the stone ledge in front of the fireplace.  “It was stepping around all those pictures.  But I don’t see it now.”

“You saw a cat there.”  He didn’t seem to be concerned that he was hallucinating, but I was.  I tried to sound casual.  “So what did it look like?”  Without hesitation he described an agile tabby right down to the paw prints. 

It wasn’t until the next morning that he agreed he couldn’t have seen a cat.  Together we pondered the illusion, hoping there would be no more.  But in the days that followed there were other incidents.  He conversed with people I didn’t see.  He questioned me about imaginary events I was supposed to have taken part in.  

Was this the confusion, I wondered, that rode along with end stage liver disease?  He seemed too normal to be working up to a bell-ringing psychotic meltdown.  Most of the time he was fine.

When Rich’s hospice nurse came on Monday, we had plenty to tell her.  She was such a good listener.  Such great probing questions.  After poking and measuring, she offered a solution. 

“Richard, have you ever used oxygen?”  Ah, if the nurse had only known.  Rich dreamed of sucking up oxygen.  “Just quit smoking” I would scoff unsympathetically whenever he brought it up. 

She wanted Rich to try it at night.  She suspected his brain was gasping for oxygen, while his cancer-struggling body claimed every breath for basic functions, like keeping him alive.  “I’ll order it,” she said.  Rich beamed.  He could hardly wait for her to leave so he could shuffle out to the garage for a celebratory cigarette.

When the delivery truck pulled up out front I had no idea the driver was going to empy half of the truck’s contents into my living room.  Three trips.  Two with a hand truck.  First he brought in the back-up tank of pure oxygen (four-feet tall mounted on a three-foot square metal frame) to be used if the power ever went out.  Then came the bags of plastic tubing and brightly colored hardware that I would string together into 50 feet stretching from the oxygen source to Rich’s nose.  

Then a bulky two-foot square cabinet, like a safe on wheels rolled across the entryway linoleum and came to an abrupt stop when it hit the carpet.  The oxygen concentrator, ready to make my life miserable, waited for a proper introduction.

The driver handed me a 39-page manual and spewed off instructions.  He pointed to where water needed to be added.  The filter needed to be cleaned and replaced.  There was a schedule for maintaining the plastic tubing.  “Oh great,” I mumbled under my breath, “more stuff for me to do.”  The driver slapped a NO SMOKING sticker on the front door on his way out. 

An oxygen concentrator, unlike a passive tank of compressed gas, pulls oxygen out of the air around it.  It’s a working piece of equipment.  It sounds four even beeps, like a truck backing up, every time it’s turned on, then settles into a mechanical drone.  A monotonous compressor noise interrupted with a two step thump followed by a barely audible ehoed chime.

Even with his good ear down on the pillow, Rich couldn’t sleep with the concentrator near the bedroom.  We wanted to stuff the thing in a closet or banish it to the garage, but evidently we were not the first to think of this because both locations were specifically forbidden in the instruction manual.  The concentrator had to be in an open room, no less than three feet from anything.

We tried the kitchen.  Too much echoing off the tile.  The living room was a little better.  Lots of soft surfaces to absorb noises.  I spent the first night moving the little beast all over the room in search of a good spot.  But the cord was short, and using extensions strictly taboo.  I eyed the cozy corner where the monument-like emergency tank sat chained to its metal platlform, but I didn’t want to wrestle with it, especially in my nightgown.

Even with my bedroom door closed, I listened for the thump and strained to hear the chime.  Vroom, thump, thump, pause, ting.  

But Rich was able to sleep and he never saw another imaginery cat.  On the down side, he became increasingly dependent on oxygen until he couldn’t breathe for long without it.  Nose bleeds became a problem in spite of the concentrator’s humidifier system.  Saline nasal spray (like Ocean) worked well.  KY jelly helped with irritations from the plastic nose pieces.  Rich enjoyed his coveted oxygen supply but continuous use left little time for smoke breaks in the garage.  We both got what we wanted, after all.

A Widow’s List

Rich wanted to know what things were on my list.  Not his usual way of requesting store supplies. “You need more mint cookies?” I asked.  He never could say the “d” word so he cleared his throat and rearranged the junk mail in front of him on the kitchen table as I waited. “No, your list . . .things you’ll need. . . later.” 

It took me a moment.  I never used the “d” word either.  “ You mean when I’m a widow?”  I actually did have a widow’s list, a fanciful list of  things to look forward to that kept me going when things got rough.  It had entries like “Learn to tango” with sub-tasks like “price lessons at Arthur Murray” and “shop for dress with above-the-knee slit.”  I didn’t think this was the list Rich was referring to.  I was glad I had never written it down.

The hospice social worker had been busy.  She and Rich had discussed ways he could still be my hero.  Were there things he could do to help me now so I wouldn’t have to do them alone later?  He stared like a little boy hoping against hope, embarrassed by the  absurdity of his own question.  I wanted to kiss him. I couldn’t disappoint him.  I thought quickly. “Well, yes, I do have a list.” 

“You do?”  He brightened and sat back in his chair.

I took an empty envelope from the stack of opened mail and reached for a pen.  “The furnace.  It’s noisy. I’ve always hated it and I can’t change the filters by myself.”

“I know your arms are too short. Let’s get you a new one.”  He beamed.  “What else?”

Within a few minutes we had a list and Rich was all over it.  He couldn’t wait to tackle the first project, replacing our old dangerously-worn, six-foot wooden ladder.  He was eager to check out aluminum ones that would be easy for me to set up under our magnolia tree and lift up to a storage hook in the garage.  He drove to Home Depot by himself to evaluate them. 

It was June 10, 2008.  I know the date because he got a speeding ticket (the kind they mail to your house with the picture of you sitting behind the wheel) for going 32 MPH in a 20 MPH school zone.  A well-known speed trap that he warned me about on a regular basis. 

We went to Home Depot several days later so I could make the final selection. He had me fold them and open them up.  He pointed out the importance of keeping the side bars level and locked.  And, of course, I should never use one in a storm or lean it against electrical wires.  

Years earlier, I would have indignantly reminded him that I am not an idiot.  Instead I listened intently, chose one with his approval (it had a drop-down shelf suitable for holding a can of paint) and loaded it on a platform cart for its ride to the check stand.

Together we worked through the list.  We gave away a stack of fire wood from the backyard that had been moved twice  but seldom used in twenty years.  We put casters on my butcher block in the kitchen. We had two overgrown sweet gums removed from the parking strip so I wouldn’t have to rake leaves or worry about broken sidewalk.  The final item on the list, the furnace which was installed the end of August, is a story all its own.  But one to be told on another day.

My widow’s list was a gift we gave each other.  We enjoyed one more summer together with “things to do” that didn’t involve doctors, pills or dying.  I could have handled all those projects on my own, probably more quickly and more efficiently.  But thanks to Rich, I didn’t have to.

Not on MY Towel!

“He doesn’t talk to me.”  The tiny lady squirmed in her chair and pulled her polyester print dress tightly across her knees.  She hugged herself and continued her story.  She didn’t drive and she was stuck in a tiny apartment with her nasty dying husband who treated her like a maid from a third world country. “  He comes out of the bedroom. Walks outside. To smoke. Doesn’t say nothin’ to me. Like I’m not even there.”  Several of the other caregivers in the room nodded. 

“I know it’s hard.”  The matronly facilitator stepped away from her flip chart and focused on the woman.  “My husband completely ignores me too.”  I thought she might burst into tears.  I could not believe what I was hearing.  And all that nodding of approval and understanding.  Could she be condoning bad behavior? 

So uncool for a facilitator.  She was  supposed to be our leader.  The rest of us came for support and direction and to cry during our allotted turn.  I was not prepared to listen to how I should grin and bear the meanness of my patient.

“Why do women put up with this?”  I wondered.  A guy is dying of cancer and the woman who is busting her tail keeping him alive and comfortable gets treated like a fly-infested plough horse?  What is wrong with this picture?  Caregivers need hugs and encouragement to keep plodding along.  I refused to believe that Rich was a saint.  I knew better, but these caregivers seemed to be suffering beyond the call of duty.  I didn’t understand their acceptance, but I could relate to how it happens.

Rich and I had talked at the beginning of his illness about my limitations.  “I’m not a nurse and I’m not a farm girl,” I’d reminded him. I had worked in offices all my life so I was just a 5-foot-5-inch woman with puny arms and a stiff  “computer” neck.  

Yet, Rich resisted my early attempts to make my job easier.  I suggested upgrading our glass-enclosed tub/shower.  I had to lie to get his approval, right down to the grab bar.  I said I needed it.  He scoffed at having “stand-by” help from a bath aide when he took a shower until he fell backwards and landed on the shower seat.  He tried to shame me by saying that the bath aides probably wondered why someone young and strong like me needed help. 

He was dying.  I wanted to love him, not argue.  I passively skirted confrontation while I picked up after him and bit my lip as his litter filled our home, turning it into a hospital suite.  I felt like I was “flopping” at a friend’s house because I had somehow gotten squeezed out of my own.  I even struggled for a place to hang my bath towel.  Unlike my toothbrush and lotions which had been stowed away long ago with all my other personal stuff, the towel needed a place to dry out.  Rich had his two favorite towels.  (None of the others were soft enough.)  So it was obvious which one was mine.  The one that I kept moving around to be out of his way. 

The day came when I walked into the bathroom and found my towel violated.  A soppy wash cloth had been flung into the middle of it.  I stared at the soaked wash cloth oozing into my towel on the towel bar and my negotiation skills and positive attitude abandoned me. 

I steadied myself with a deep breath and stomped out to the livingroom.  “How dare you,” I growled.  ”You may be sick, but you’re not THAT sick.   I live here too . . .”  Rich stopped me with an apology before I could properly vent.  “I knew when I did it, I shouldn’t have.  It won’t happen again.”  I wanted to rant more but he cut me off.  “I said I won’t do it again.”  And he never did.

He knew better, but I had to stand up for myself.  I had to draw a line and demand respect.  If you don’t like being treated like a nameless domestic for hire, then start acting like the strong, organized crisis manager that you are.  And don’t let anyone with a flip chart tell you otherwise.

A Decent Nursing Home?

I was just looking for a few days off.  Five days actually, to fly out-of-state to see my nephew get married and visit my sister.  Rich was too fragile to go and I couldn’t leave him alone for long.  Once, in just one hour, while I was out buying groceries, he locked himself out and fell on the patio, gashing his elbow so badly that it took a month of wound care to scab over.  When I’d left him for a two-day writers conference, he was sick when I got home.  Yes, a friend, as promised,  had come by and taken him to lunch, but didn’t stick around for the next twenty-four hours to handle the restaurant food aftermath.

When hospice suggested respite care in a nursing home, it sounded like a good deal.  Rich would have 24/7 attention, warm meals, a supply of on-time medications and an opportunity to socialize, something I was always trying to nudge his way.

The wedding wasn’t until May, but we started the selection process months earlier.  I took a nurse friend to coffee and scribbled on a Starbucks napkin.  Two lists.  The five best nursing homes in our area and the five worst.  Where she would go if she were incapacitated vs. places that might kill you if you stayed there.  

Rich and I made drop-in, not scheduleld, visits.  It took over a month because one trip on a good day pushed the limits of his stamina.  We gave them all the whiff test and checked for activity and happy faces.  We eliminated one because the rooms didn’t have TV.  The other four seemed fine.  When the time came, only one had an opening.  That’s the scary thing about nursing home respite care.  You can do all the planning you want, but availability is the key.  You only have “open beds” to pick from no matter where they are.

The facility promised to meet all of Rich’s needs.  Yes, he would have a TV with closed captioning in his room.  Yes, I could bring a supply of his favorite tapioca to be kept in the small refrigerator at the nurses station.  The placement director told us to arrive early in the day so we could meet the dietician to ensure foods that he could eat.  Yes, the nice bath aide who helped him shower twice a week at home could keep on schedule and assist him at the nursing home.

It started out badly and never got better.  When we showed up on the appointed check-in morning, no one was expecting us.  In hindsight Rich would have done better left at home with a series of drop-in visitors than what did happen to him, most of which I didn’t hear about until after my trip.

In five days they never gave him drinking water.  He never got a side table on wheels either so maybe that was the problem.  (No place to put the pitcher of water.)  When he asked for water they gave him a thimble-sized pill cup.  He asked about bottled water in the vending machine and was told the machine hadn’t worked in ages, contrary to the commentary on our walk-through tour.

They didn’t have his medications nor a sense of urgency that they should get them.  They wouldn’t allow pain pills brought from home, so I got to make frantic calls to hospice and the pharmacy delivery driver while I was packing my suitcase.

Rich couldn’t eat the food.  It was all pureed and tasted nasty.  He never got to eat any of the dozen tapioca cups that I wrote his name on in fat, black ink.  They were thrown out at the first nurse shift change.  We never met the dietician although she was scheduled to meet with Rich about his preference on the day I took him home. 

The bathing arrangments didn’t pan out.  When the bath aide showed up at the usual time, all the showers were full or spoken for.  No one mentioned that you had to sign up for a shower stall.  So the only bathing Rich got was a quick soaping and a hand-held rinse in a dark corner.

Rich was alone in his room during the day so he got some sleep.  At night his roommate’s PTSD (post traumatic stress disorder) outbursts and oxygen machine thumping made it impossible.  There was no telephone in his room.  When I called him he used the phone at the nurses station where he was afraid to verbalize anything besides he was “doing fine.”  I could have gotten him a cell phone if I had known he would be standing out in the hall, but then what would I have done from afar to help?

“Did you have a good time at the wedding?  Did you enjoy your trip?”  That’s all Rich wanted to know when I started hyper-ventilating as I heard the details of his nursing home stay.  Yes, it was great to be somewhere else, having fun.  And Rich did survive thanks to hospice personnel and a friend who came by to take him on “outings” which mostly involved bringing him home to relax and get stuff.

To be fair, they did come through with the in-room closed captioned TV.  If there are decent nursing homes out there, Rich and I spent a lot of time looking, yet didn’t experience one.  But I learned what I needed to know.  No matter how terminal he was, I would never give another nursing home a chance to kill him.

Splitting the sheets

I didn’t sleep much in 2003, the year of Rich’s first cancer (lymphoma) but it didn’t seem important.  I was on a mission to avoid the inevitable—waking up to find him dead beside me.  Chemo-therapy was slowly sucking the life out of him.  He was a walking corpse during the day, but at night he slept on his back, motionless, so it was hard to tell.  I spent my nights routinely testing for movement, listening for breath. “Yep, still alive,” I’d tell myself when he responded to my light touch under the covers.

The second cancer (primary liver cancer) brought high doses of  pain medication and nightmares.  Rich slept but his body never rested.  His legs spasmed, propelling at least one of his size 14 feet in my direction.  He cried out in sharp, angry threats.  He thrust his left arm straight up and wrote in the air with his left hand, which is strange because he was right-handed. 

My dozing would be broken with a scream.  He whimpered and thrashed, unable to find his way out of his dream.  It took rough shaking to wake him,  then I held him, kissing his forehead, as he sobbed.  In the mornings he seemed fine but I was exhausted.

By 2006, sleep deprivation was making me cranky.  The nightmares had subsided, but the flying arms and legs had not.  They appeared nightly with gutteral dialogue.  “I can’t do this anymore,” I told Rich.  “I’ve got to get some sleep.”  He suggested we buy a single bed for me and set it up in one of the other bedrooms.

“Oh, no,” I protested.  “We don’t need to go to all that trouble.”   Rich was always thinking long term, while I was thinking “what am I going to do with an extra bed when he’s gone?” We went shopping for a less permanent solution and came home with two foam rubber pads.  They were cushions to be used under sleeping bags but I put them one on top of the other so that I had eight inches of mattress.  I threw them on the floor in the bedroom across the hall and curled up with my favorite pillow between folded sheets. 

I did sleep better that night, but we both missed the pillow talk.  I’m not talking about sex. Cancer had taken that from us a long time ago.  I’m talking about that conversation that flows easily once the lights are out and you’re settling down with your #1 fan.  The every day things in whispered tones to someone who knows your history because he’s lived it with you. 

The first night Rich and I shouted out our pillow talk across the hall but it was awkward especially since Rich was practically deaf.  I tried going to bed with him and then getting up and moving across the hall, but then I couldn’t fall asleep. 

I bought a real single mattress and frame in 2007.  I didn’t mind getting up and down from the floor to sleep on the foam pads, but manipulating them to change the sheets took more energy than I felt I could ration. 

The creation of my caregiver bed was an emotional milestone.  The acceptance of change in our relationship, the end of our lives as lovers.  Rich would never again be that passionate man I married.  He was my dear sick friend, my little boy, my baby.  I was his caregiver.

By 2008 Rich was in bed most of the time, surrounded by paraphernalia to keep him comfortable.  So at some point I would have had to find my own bed.  I probably should have let him sleep alone sooner than I did, but it was a hard thing to give up.  Losing a life companion involves so many losses, all of which look better with a good night’s sleep.

Can I Call Someone For You?

My emergency/help list is very low tech.  A hand-written sheet of notebook paper.  I’ve protected it in clear plastic, but it’s still clamped by a strong magnet against the side of a metal filing cabinet.  It’s in a strategic location, just off the hall, in a room we called our study, across from the bathroom, where any social worker or highly trained medical professional would be sure to find it.  Well, maybe for you, the refrigerator door would be better.

I’d had a nagging vision of being found rocking and hugging myself, crouched in a corner.  A rescue team comes through the door.  They attend to Richard.  Then someone takes my hand and offers to call someone for me.  And I don’t know what to say.

Like any good caregiver, I suppressed those fears, until we had a crisis.  The unthinkable.  I got sick.  We had both been given megadoses of new germs.  Rich got his from a five-day respite stay in a nursing home.  I got mine from flying to a wedding, schmoozing with people from three Western states. 

Rich was recovered enough to bring me the phone.  Yes, there was a virus going around, but I would have to come in to the doctor’s office to get checked out.  I made the appointment with tears in my eyes.  There was no way I could drive there.  I was too weak to stand.

With little discussion, Rich agreed that he should not attempt to drive me.  (I was sick, not crazy.) Then, within a few minutes, shuffling around in the study, he came up with his old address book, found a name, called it and got me a ride.  My hero, one more time.  Unlike me, he didn’t think twice about asking for help. 

When I got well, I set up my list, thinking it would be used by strangers.  There are first names, phone numbers, followed by key words to identify how I know them.  So that anyone could call and have an introduction.  “Dale needs help.  She’s in your poetry group?”  I mean what could be more embarrassing than placing a call and getting, “Dale, who?  Never heard of her.” 

There are four widows on the list, marked with a W.  Married friends are listed with their husband’s first names.  Some of the men are still in good enough shape to pitch in for emergency handy-man jobs such as when our dinningroom curtain rods fell out of the wall, exposing us to that “fishbowl look.”  There is a friend on the list who took care of her father in his last years.  One lives near a grocery store so she is prime candidate for “picking up a few things.”  My neighbor is listed as the one “on the right.”

So when someone asks if there is anything she can do, tell her you’ll be calling her.  Then put her on your list and start dialing.

Beyond Prune Juice

Constipation haunted us.  We just couldn’t get a handle on it.  Richard took stool softeners, laxatives.  He even ”assumed the position” as he liked to call it, several times a week on all fours on the bathroom rug. (If you haven’t had the pleasure of giving an adult enema, it’s called the knee-chest position). 

He claimed to be moving his bowels every other day, but for some reason it just wasn’t enough.  In the first year of his liver cancer we had a constipation crisis about every three weeks.  He’d be so plugged up he couldn’t sit down.  Twice we went to the E.R., only to get triaged into infinity.  Well, who wants to dig poop out of a frail 66-year-old cancer patient’s butt?

“You need a better bowel program,” the E.R. nurse observed.  “Well, no sh–!” is all I could think.  “Where do we get one of those? ”  

It wasn’t until Richard went on hospice that we got educated.  Hospice flushed him out and built him a bowel program from the bottom up.  The really sad thing is that the pills and liquid that he took daily to stay constipation-free for the last eight months of his life could have been prescribed by his oncologist or his liver specialist or his family doctor years earlier.  They weren’t exotic or cutting edge or even expensive. 

More important, we finally learned how to recognize and monitor normal bowel activity.  Rich and I had completely missed the boat on this.  Well, no one told us. When he said he “went” I took his word for it.  He was a grown man.  I didn’t think I needed details or a sneak peek.  Wrong.

Think pasta machine with dough squeezed through tiny holes.  Now imagine “extruded” stool, skinny curling things.  What does that mean?  It means you’re in big trouble constipation-wise because you’re so full of it that there’s no room for the new softer stuff that has to snake its way around the road block or die trying.

Bowel regulation is a moving target.  As medications, especially narcotics, increase, so should the amount of stool agents.  Miralax worked great for Rich for about a year.  You can buy it over the counter now without Rx.  The hospice plan included lactulose syrup (liquid) and senna-s (pills).

So it doesn’t hurt to check out the bowl.  Fat cylinder turds are good, skinny curly ones are bad.  It’s so simple once you know.

Put yourself on the list

I became a caregiver in my fifties.  I went from a lifetime of working 40 hours a week to a 24/7 schedule that rotated around my husband’s struggle with cancer.  We had been married over twenty years and all we had was each other.  Although devoted and attentive to his growing needs, as the years dragged by, I felt I was dying inside, almost at a faster rate than he was. 

I was disappearing.  And I didn’t know how to get myself back. I tried medication for anxiety and depression.  I’ll talk more about that adventure on another day.  What I eventually realized was that I couldn’t remember the last time I did something for myself.  Something I wanted to do, just for fun. In fact, I couldn’t recall fun. 

Boldly I penciled myself in on the calendar for four hours on the following Wednesday.  I didn’t know what I was going to do, but I had something to look forward to, something to plan for me.  Daydream fodder.  I saw myself holding a coffee cup in my hand, giggling with a girlfriend.  She’s showing me pictures of her cat.  I’m laughing. 

Unfortunately, I didn’t have any friends so I had to switch to visualizing a pedicure while I scoured my memory bank  for people I had worked with who might be in the phone book.  Someone with an unusual last name who would  jump at the chance to have a cup of coffee and chat.  Anybody.

If you intend to survive caregiving, you need to put yourself on your TO DO list right up there with doctor appointments and trips to the grocery.  If you had four hours next Wednesday to devote to yourself, how would you fill it?

When nothing sounds good enough to eat

It’s a funny thing about nausea medication.  Once your stomach goes into spasm it’s really too late.  There’s the pill you put under your husband’s tongue and the drops you squirt inside his cheek, but even if you stop the blasts from the belly, forget about him eating.  And really, isn’t that all you wanted, for him to eat something, before he started weighing less than you do?

No one tells you.  Not the oncologist, not the chemo nurse, not the guy in the white coat at the drug store.  No one tells you that you need to take the nausea medication before you eat.  It’s a nausea-prevention pill.  What a clever idea.  Something I learned from another caregiver who routinely gave his wife her nausea pill an hour before each meal.  And she ate. 

In the first three years of illness, even with 6 months of chemo, Richard never complained of nausea.  He never vomited, but he almost never ate.  Nothing sounded, smelled or looked edible.  He never wanted any of his nausea pills.  What for?  He didn’t feel like throwing up, he just wasn’t hungry.

Richard and Me