dyingtohelp.com

Here’s the dirty little secret we caregivers share. A shameful secret that few talk about.

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.

“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.)