Archive for May, 2009

My mother told us they’d be days like these

Sunday, May 31st, 2009

safety-net

Four weeks ago my mother told us that things would get bad as she neared the final days of her life.

As always, Bette knew what was ahead and tried to prepare her kids. Once a mother, always a mother, even when your “kids” are middle-aged adults.

“You need you to know that it will be very hard for you caring for me. Harder than anything you can imagine.”

“Mom, we’ll be fine, we’ll be OK,” I said.

“You won’t be OK. But as you’re going through those final days know that I will be OK. I’ll be so heavily medicated that I won’t be aware of the pain or any of the other awful physical things that go along with the very end.”

As I lay outside Bette’s bedroom all day on Friday listening to her gasping and choking on the fluid in her lungs, I remembered what she said. As I tried to put the morphine into her cheek, only to have her choke on it because she was losing the ability to swallow, I remembered what she said.

And when Bette stopped breathing altogether on Saturday afternoon, I remembered my mother told us that  there would be a day like this when  “the adventure would be over.”

Psychologists say adventurous experiences can be negative, like fear, and positive, like being immersed in the flow.  There’s nothing more adventurous than helping someone you love die. There’s no day sadder than when they do.

RRRTEO: The last word

Sunday, May 24th, 2009

It was a dreary Thursday and Bette was frustrated. Her legs were swelling and she hadn’t been out of the house in two weeks.  “I’m sick of lying around. I need to do something. Let’s play Scrabble.”

Scrabble in our family is more than a pastime. It’s a social ritual, an escape, and sometimes a ruthless, competitive sport.

So I set up the Scrabble game, trying to position the board on an ottoman in front of Bette’s chair as she was too weak to sit at a table.  The first bad sign started before the game began — Bette kept dropping the tiles on the floor, not being able to place them on the tray. I helped her get them settled.  She had drawn an “E”  and I an “M” so she went first.

It took her a long time to make a word. “What’s wrong with my brain,” she kept saying in frustration.

“Maybe we shouldn’t play today.  It’s afternoon and you’re usually really tired around this time. Why push it,” I offered.

“No, I am going to do this. I need to do this,” Bette stated.

After about 10 minutes, she made her word: RRRTOE.

“Um, Mom, what’s that word?”

“It’s reroute. Isn’t it? Oh what’s happening to me?”

Bette started to get a bit agitated and frightened. The cancer in her brain was going haywire in new ways.

I put the game away, got her some anti-anxiety medicine and we sat quietly.  No spoken words would help. We both knew this was bad, a new symptom messing with her mind.  After a few minutes I turned on “Oprah,” which was part of the afternoon routine. We didn’t watch the program as much as let it calm down the unsettling recognition that terminal cancer wreaks havoc. It’s both unpredictable and unkind.

That night I lay in bed thinking about REROUTE, the word Bette had wanted to make. Her life was being rerouted and she didn’t like where it was going. In her weak state she couldn’t scream, pound a wall or run out of the house to take out her anger on the world and this terminal illness.

But she could mangle the word that was scrabbling her life.

Swimming too far out

Sunday, May 24th, 2009

Water aerobics - 3

We sat on a stretcher in the ER basement hallway of Mass General Hospital with the fluorescent lights making sounds a lot like those cheap bug catchers zapping mosquitoes.  It was  1:30 a.m., Bette had just been told that she had terminal brain cancer, and she was waiting for a bed in the neurosurgery ward to open up.

“We can do this,” she said to me. “It won’t be easy but we can.”  I believed her, as I always believed my mother when she was convinced something was possible when others didn’t. It was a pattern of our lives.

In this case “do” meant that Bette would do everything in her power to help us help her in these final months.  She would do for us, and we for her.

Bette’s belief that we “can do this” was like her belief that if you know how to swim you’ll be fine even when you swim too far out and the current starts pulling.

My father would sit on the beach worrying that my  mother was swimming too far out into the ocean. She paid him no attention, believing in her soul that there was nothing to worry about. Worse case you turn over and float on your back, letting the buoyancy and goodness of the salt water guide you back.

There were times during Bette’s illness when she or we, her loyal but often bumbling caretakers, would stumble into depression, guilt, frustration or exhaustion. (And sometimes all at the same time.) One of us would often say to the other, “We can do this.”

That phrase became like one of those Styrofoam  swimming noodles that kids use  in deep water. It doesn’t look like a float. It’s not sturdy and it’s usually a crazy fluorescent color like lime green. Nothing that conveys  durability or safety. But those noodles give you a weird kind of support. You still have to use your arms to paddle and kick your feet to get back to the beach. But that little piece of Styrofoam, like the “we can do this” mantra, is a flimsy reassurance that gets you past danger, over fear, and through exhaustion.

My father really believed that Bette would die from swimming too far out.  He would be suprised to learn that she’s trying to get to the end by holding onto a noodle.

She can do it. And we caretakers can too.

Denial is a drag

Monday, May 18th, 2009

Playing “let’s pretend” is a quaint game for children.  ” Now, you pretend that you’re an astronaut caught in space, and I’m a teacher trying to save you….”

But as adults, playing “pretend” in our heads can drag down the terminally ill person. Intentions that “things might be much better in a couple of months” may help you cope with your sadness, but too often good intentions are cloaked in denial, and that denial is a really bad-ass energy vampire. Maybe a bad-ass energy vampire swarm, sucking the energy from the dying person who has to once again explain the real deal.

One of Bette’s friends explained that they were moving the June investment club meeting halfway between  Boston and the Cape to make it easier for Bette to attend.

Bette was astounded. Truly.  She had told her friend how ill she was, dying really.  Could she have been more frank? What’s with the denial?

“I really don’t think I’ll be in any shape to go,” said Bette.

“Well maybe instead of dinner we could change it to lunch if that would be easier,”  said her friend.

“Really, don’t plan around me. I’m in no condition to be planning eight weeks out,” said Bette, exhausted from having to again remind people how very sick she is.

When in doubt with a terminally ill person, look at him or her. I mean really take a close look. Is their speech slower than usual? What about their  body language — perhaps more stooped in the shoulders? Are they walking more cautiously and slowly? And, the clothes, hanging off a bit? Do they eat much?  What about the eyelids? Probably a bit drooped.

When you hear someone is very ill, be more aware, and then respect what you see. Even more, respect what they say.

Instead of presuming, ask gently, “Do you think you might be up for going to an investment meeting in the coming weeks?”

Then listen. The terminally ill person will tell you whether she thinks it’s possible, or to please count her out.

Flash forward from young kids’ playing pretend to teenagers denying what they were really up to while you were out on Saturday night. Ah, you can sniff the denial. And it’s making you angry, really angry.

Kids playing pretend was easy as a parent. Denial often rips our guts out. Never mind our hearts.

That’s how a terminally ill person feels when we don’t accept her new circumstances.

Doubt

Monday, May 11th, 2009

towards-the-light

“I’ve always believed that there is something after this life. Now I don’t know. And it’s making me scared,” said Bette.

“When living my life I guess I just unthinkingly accepted religious beliefs about the concepts of heaven, everlasting souls, the “white light,” joining loved ones who have died before us,” mused Bette.  Like saying prayers these beliefs are ingrained from a lifetime of worship, yet rarely do we think about the words behind the prayers or interrogate the meaning of the beliefs.

But when you know you’re going to die soon, you think about those concepts – and many are hard to believe.   There’s no proof, after all.  Just conjecture. Is anyone really sure that Jesus, Muhammad, Budda, Joseph Smith, Jr., Confucius, Zoroaster or any other holy men had the inside skinny on what really happens after you die?

Bette talked about this fear and her doubts last night, coming to no conclusions, simply acknowledging that as the cancer weakens her body, so does her belief about afterlife.

Then today the retired Monsignor of her church, who she traveled with, who helped her through her grief after her husband died, and who she hasn’t talked with since his retirement a few years ago, called out of the blue.

“I heard you were sick,” he said. “You must be scared.”

“I am,’ she said.

“It’s going to be alright. You’ll be fine,” he said.

Monsignor Tosti’s call comforted Bette and provided much needed reassurance that whatever happens, she will be fine.  It didn’t resolve her doubts about belief, but it did strengthen her faith.


(Note: this discussion from last week when Bette still alert.)

Mom’s on the roof: more sick humor

Monday, May 11th, 2009

dog-on-a-roof A favorite family joke is about the man who went on vacation and left his dog with his brother. While away he called his brother to ask about his dog.

“Your dog died,” said the brother.

“What?!!!,” replied the other brother. “You’re not supposed to just come out and tell me like that.  The first night I call you’re supposed to say the dog is on the roof. The next time I call  you’re supposed to  tell me that the dog fell off the roof. The third night I call you tell me that the dog died. Got it?

“Got it.”

“Okay, good,” said the brother on vacation. “Ill call you tomorrow.”

The next day the vacationing brother calls and asks his brother, “So how is everything going?”

“Good,” says his brother, trying to make pleasant chit chat.

“And how is mom?”

“She’s on the roof.”

Today a work crew swooped in to re-roof the house behind my mother’s, while she nears death. My sisters and I looked at the roofers and then looked at each other.

“Mom’s almost on the roof,” we all said practically in unison, and laughed until we really cried.

Scared shitless, and finding grace

Thursday, May 7th, 2009

panicbutton

Now that’s a terrible heading for this story. (The first part, anyway.) Maybe I should have titled it, “acute stress attack” or “physiology and psychology of the stress response.”  Whatever you call it, when the dying person you love goes into their first dangerous “oh-my-God-I can’t breath” attack, you, the caregiver, are put to The First Big Test. (Mmm, maybe that’s a better title).

Bette was turning red then purple as she coughed and tried to get a breath. I ran to the refrigerator and opened the morphine that hospice had provided, figuring out  how to put the plunger in, turn the bottle upside down, take the plunger out to the right dose, and oh dear God, hope that I wouldn’t spill the morphine all over the place because we’re probably going to need much more of this drug.

Bette was trying to give instructions but couldn’t talk for lack of air. I squeezed the morphine under her tongue. She gagged at the taste, still fighting for air. I propped some pillows and helped her sit up, hoping that position would make her more comfortable. Then I called hospice and left a message, and got Bette a little cranberry juice to help her overcome the taste of the morphine.

Through it all, I stayed calm, talked slowly and reassured Bette that she’d be just fine once the drug kicked in.  I sat on her bed a while as she settled, shaken but able to breath.

Now anyone who knows me knows that I tend to be hyper, overly excited and occasionally manic when I’m stressed.  Not today, though I felt scared through my whole being.  Scared shitless as hardcore Bostonians would say.

But I also felt a spiritual  otherness, being able to love Bette by helping and in doing so finding grace.

Foul moods

Wednesday, May 6th, 2009

Beware of Foul Balls

I’m sitting here on Cape Cod and the rain is blowing sideways, straight ways and relentlessly. It’s May but the day is dark and so is Bette’s mood.  Foul all around. And not nice foul, like foul balls in Fenway Park on a hot summer night.

The bickering during the last 24 hours has been proportionate to what I see as the evil cancer soldiers marching more aggressively through Bette’s body, looking for new places to set camp and making a mess wherever they go. The more territory they claim this week, the more irritated she becomes. Rightly so. But still…

Though she can barely stay awake more than a few hours and the cancer has spread to her brain Bette boldly stated yesterday that she wanted to see the oncologist and make sure it was OK to start driving.

“Drive?” I asked incredulously. “How could you even think about that. Look at the state you’re in. You could hurt someone driving.”

“I don’t want to discuss it with you. But I am going to talk to the doctor about it. Now call the auto repair shop and get the car back today.”

“Why today? I have my car.”

“I want the car and I want to see the doctor about driving.”

Oy.

Later it was about the trash.

“Why are you using those trash bags,” asked Bette. “Just use these  grocery bags.”

“But those are too small. They don’t hold enough and they’re flimsy,” I shot back.

“You’re being ridiculous. Use these.”

Today Bette is laid low, unable to do much at all but sleep. The foul mood has ebbed. I suppose yesterday’s irritation was all about fighting the new cancer soliders. Today she’s accepting them.

It’s still raining.

You’ve got the power

Sunday, May 3rd, 2009

One thing that so many dying people want is to call their own shots, making decisions on the big things like whether to have surgery, do chemo or what hospice organization to sign up with, to the small things, like whether it’s a good day for visitors or if the screens should be put on the windows.

“I am in charge of me until I can’t be,” stated Bette.  End of conversation. Shades of gray not up for discussion. “I’m an adult, not some child just because I have cancer.”

If there was a soundtrack for the desire to be in control, it would be the 1990’s dance song, “The Power” by Snap!, which has become a cult-like anthem at sporting events.  Imagine if you will that the sick person has the energy to get up and dance. Now cue the music, turning the volume way up when the staccato synthesizers kick in.

I’ve got the power hey yeah heh
I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah
I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah
Gettin’ kinda heavy

It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic

Now keep that song in your head as situations arise where, as caregiver, you feel strongly about what should be done and the dying person disagrees with you.


I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah

Or if doctors, hospice nurses and other professional help meets with the person you love and looks more at you than her, do two things. One, find a different nurse or doctor. Or, encourage the sick person to next time speak up and tell people that that they are making their own decisions.

Even more fun is to download “The Power” for a ringtone and call the phone when people are forgetting who’s in charge.

I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah

More thankfulness, less hope

Sunday, May 3rd, 2009

When it comes to dying, people want you to be hopeful. To talk about possibilities, about people who lived much longer than doctors predicted, about miracles.

When I’ve had to have frank sit-downs with family and Bette’s friends to explain her situation, people listen as I cut through all the niceties and tell them that Bette does not have long to live. I also tell them that she’s OK with dying and needs them to be OK with it too.  She’s so thankful for the life she’s had – and for all that you’ve been in her life.

“You’re being awfully negative,” comes the reply. ” You need to have hope and be more positive.”  If this happened once, I’d overlook it. But there’s a pattern.

Why can’t people celebrate thankfulness? Why is that virtue so overlooked when it comes to dying?  What happened to the mantras, “Be thankful for what you have. Be thankful for every day.  Make a list of what you want your obituary to read so you can be thankful that you lived the life you wanted.”

When people are dying hope is overrated, and thankfulness is the goddess to worship.  How great is it when you’re dying to be able to look back on your life and say, “I am so very thankful.”  How joyful is it to hear someone you love express their thankfulness, and for your part in it?

It’s more than joyful. It’s inspiring.  And that’s far more powerful than empty hope.

Tea but no sympathy

Friday, May 1st, 2009

no-sympathy-flowersjpeg

Getting the news that you have incurable cancer is like being shot into some sort of bizarre parallel universe.  First you keep trying to make sense of it all. How could it be the world I knew no longer is?  But I have to deal with this new universe because I am still alive. I am me, still.

Just as you’re trying to make sense of this new life that you never intended and never wanted, you get slapped by well intentioned people smothering you with platitudes.

(The definition of platitude is “a pointless, unoriginal or empty comment or statement made as though it were significant or helpful.”)

“I can deal with the cancer,” said Bette, ” but PLEASE spare me the sympathy.  I can’t stand it when people give me these pitying looks, and tell me things like, ‘I know how you must feel. But you have to be strong and hopeful. Sometimes people live much longer than the doctors ever expect.’

“I’m OK with dying, why can’t they be?”

I witnessed one such sympathy encounter.  While my mother’s manners prevent her from ever being rude, I could read her body language and tone, which, if translated, would have gone something like: “Get this boob the hell out of here. She has no idea what it’s like to be told you’re dying. Telling me to “have hope” is so condescendingly stupid and inane.  And she just seems to keep blabbing on and on about nothing, which is exhausting. This is why I’m starting to dread visitors.”

So a few things to avoid:

  • I’m so, so sorry. I can’t believe this is happening to someone like you.
  • Oh my god, what are you going to do?
  • Have you talked with your doctor about homeopathic, alternative medicine treatments? You know there are a lot of options out there that doctors don’t know about.
  • This is a time where you must have faith in God.
  • You must feel so grateful that your children are nearby.

What is helpful:

  • Simply say, “I heard the news.” Then let the ill person respond. She or he will likely direct the conversation towards what is comfortable for them. And remember, this is about them and not about you.
  • Pick up on the ill person’s cues. Often I hear my mother say to someone, “Let’s not talk about that.” That’s the request to please, please NOT talk about that topic. Drop it. Avoid it like the plague or the metastatic cancer that it is.

When visiting bring a plant, bring a book, bring some good English tea, but please, no sympathy.