As the end nears you start wishing the person you love so much would hurry up and die.

I mean how much more can anyone take.  The person you love is no longer conscious much of the day, if at all.   The day is one of tedious tasks– morphine every hour, sitting quietly holding Bette’s hand while she moans and stiffens further into a fetal position, with her right hand becoming more permanently bent, as if that human hand was turning into a puppy paw, asking for a treat.

If she were asking for a treat I imagine her saying,  “Oh, please dear God, take me.  I want to go quickly and with dignity. These daughters of mine now have to put those horrible adult diapers on me.  Such humiliation. Please, I’m begging, take me and spare them having to do this. I don’t want them to remember me this way.”

But Bette no longer talks. She just moans and whimpers.

“Is she in pain,” callers ask.

As the morphine cocktail – four fifths morphine, one-fifth cranberry juice to cut the horrific taste – dribbles from her mouth , I worry that nothing is getting into her system and, yes, there is pain. Hospice says it’s too late for an IV drip; Bette’s veins probably wouldn’t take it.

It’s  9 a.m., noon, 3 p.m., dinner time, 10, 11, two in the morning, four in the morning, the sun is coming up, coffee time, breakfast. More morphine. Change the diaper. Turn Bette over and sponge bathe her. Change the sheets. Cut a clean nightgown up the back so we can more easily get it over her head and change the diaper without causing her too much pain.

More moans. Not wimpy moans like a puppy with its cute paw raised for a treat, but an old dog’s moans, a dog who needs to be put down because he can no longer make it outside to pee. His food goes through him and comes out like sludge. He needs to be carried up the stairs at night, though he mostly stays on newspaper on the kitchen floor.

“Please God, make her die.  How many more days must she suffer? When does it all end so we can live again?  Go to work, sleep all night, be in our own beds?

“Damn, stop it. That’s selfish,” we remind ourselves. Shame. Shame. Shame.

A close friend calls and we remember that while her husband was dying she planned a three week vacation to Hawaii. We were appalled. “How selfish,” we gossiped.

Now we know how beat caregivers become. How much you need something to look forward to. Something where you can plan, control, mark out the calendar dates with certainty.

At the end, I feel like a watcher, not a giver. I am powerless at a time when the best mother in the world lays dying, gurgling and choking on the fluid in her lungs. But not the morphine she so needs.

Please God, hurry up and make Mum die.

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.

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.

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.

“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.)

“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.

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.

The “who knows” part is important.  I’ve never been one of those touchy-feely, new age kind of people. Logic has been my North Star. But when the dying person shares special dreams or signs,  we must put aside our biases, and honor those signs.   This is their journey and we’re here to help, not judge.

Bette wanted to share  a story, but then stopped and said, “Oh, it’s probably foolishness. I’m too embarrassed to talk about it.”

But clearly she wanted to talk about it.

“The night your father died I felt someone put an arm around my shoulder and give me a hug. I felt the warmth of that arm. It wasn’t like a dream. Today when I was napping that same arm hugged me three times.  Now I don’t feel as scared about what’s going to happen. I know I’m dying and it’s OK.”

And I realized by listening respectfully I made it more OK.

Greg’s reaction was, “Maybe we should all be talking about those things every day. Not waiting.”

Then I saw this beautiful video from Therese Borchard who blogs the BeyondBlue column over at the BeliefNet blog. Enjoy.