Archive for the ‘Getting the bad news’ Category

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.

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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.

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Boo Boo’s mother-in-law’s next door neighbor’s cousin had cancer too

Monday, April 20th, 2009

When it came time to spread the news of my mother’s illness to my co-workers and friends, I wasn’t sure what to say, and how to say it, and didn’t want the spot light on me.

I shouldn’t have been concerned.  Everyone knows someone who knows someone who had cancer.  You share your news and people say, “You know, Boo Boo’s mother-in-law’s next door neighbor’s cousin who had lung cancer and went to a hospital and was wicked sick so she  got chemotherapy that made her bald,  then died, and her daughter was wicked exhausted so be careful and make sure you take care of yourself.”

This was not easy to hear. I didn’t care about Boo Boo. Still don’t. Never will.

One person listened to me — and listened hard. Then kind words of advice followed and I think of them when I sit quietly with my mother. “Ask your mother questions. Find out as much as you can about her. Ask what her life has been like.”

Everyone’s story and experience is different. Listen. Don’t talk.

Posted by Nancy Kelly

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Enough with the banana bread

Monday, April 20th, 2009

banana-bread

  • Birthdays: cake
  • New Year’s: champagne
  • Terminal cancer diagnosis: banana bread?!!

OK, I know this sounds kind of rude and ungrateful. But hold off on the banana bread. Sick people rarely have a sweet tooth and the caregiver rarely can eat all those banana breads.

The week Bette got home from Mass General Hospital, people kept stopping by the house and leaving banana bread. We must have had nine loaves by the end of the week, and three big plates of brownies.  It seemed like the banana bread was reproducing. Every morning there would be more. I came down to the kitchen, made coffee, and pondered, “What should I do with the banana bread?”

We started freezing it. But then there was no room in the freezer for real food.

Clearly stressed about the mushrooming BB’s and feeling guilty about throwing kind intentions into the trash, I asked one of my mother’s friends, “Why are people giving us so much banana bread?”

“It’s so that you have something on hand to give people when people visit,” she explained.

“But Bette is too sick for visitors. I’m the only one here.”

“Oh.”

When people die, there are a lot of people around who need to be fed. When people are dying at home and not wanting any visitors, there’s not much need for banana bread.

A better option would be to ask the caregiver what food, from what local stores would be appreciated.  Really, it’s OK to ask.  When I’m with my mother these days the last thing I want to do is to have to grocery shop and cook.  But I need to make sure she eats, and I’m always hungry.

To be able to have the squash and steak tips from Roche Brothers is heaven.  Better yet, put us on a steady meal delivery from Chef Ralph’s Mad Platter. And even better, instead of saying, “Let me know how I can help,” offer to organize friends around pitching in for weekly meals from a local place like the Mad Platter is for us.

The ill person needs to eat to keep some strength and be able to tolerate medications; the caregiver needs to eat to stay healthy to be able to care.

Just not banana bread.  :)

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I should have called

Monday, April 20th, 2009

“I know I should have called you a few weeks ago, but I just didn’t know what to say.”

We’ve heard that from several people. And, to be honest, we’ve been in the same situation where we didn’t know what to say to people who had just been diagnosed with serious illnesses. So we just didn’t call. MISTAKE.

Here’s the deal. Just call people who have gotten tough news. Don’t worry about what to say. Just say, ” I heard the news and want to tell you I’m thinking of you.”

Better yet, write a card or a cool post card and drop it in the mail.

That small gesture means so much.

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Magical thinking

Monday, April 20th, 2009

Asparagus Hollandaise

Heads up: be on the lookout for how to help people by sharing the truth, and making it OK for them.

Our sensitive, kind cousin Amy sent an email to me about an asparagus treatment for cancer that she thought might help Bette feel better.

My first reaction was, “If only.”  The second was, “Amy doesn’t know how very sick Bette is, that we’re in the final lap here.”

So I sent Amy a note to tell her. She deserves to know. She wrote back that she had no idea that Mom’s illness was so far along. And that she was thankful to know.

What I learned from this is that helping people means being truthful. By letting them know that the person you all love knows the facts and is OK with dying soon – and that you hope they can be too.

***********************************************************

Several years ago, I learned of the discovery of Richard R.Vensal, D.D.S. that asparagus might cure cancer. Since then, I have worked with him on his project. We have accumulated a number of favourable case histories.

We would have other case histories but the medical establishment has interfered with our obtaining some of the records. I am therefore appealing to readers to spread this good news and help us to gather a large number of case histories that will overwhelm the medical skeptics about this unbelievably simple and natural remedy. For the treatment, asparagus should be cooked before using, and therefore canned asparagus is just as good as fresh.

* * PROCEDURE:

1) Place the cooked asparagus in a blender and liquefy to make a puree, and store in the refrigerator.

2) Give the patient 4 full tablespoons twice daily, morning and evening.

Patients usually show some improvement in from 2-4 weeks. It can be diluted with water and used as a cold or hot drink. This suggested dosage is based on present experience, but certainly larger amounts can do no harm.

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The four words to never to say to a cancer patient

Sunday, April 19th, 2009

“You will be fine.”

Oops. If you don’t really know the medical situation, you may not want to use those four words.  Especially if the prognosis is terminal.

Bette, whose prognosis is terminal, went for blood tests one day. The medical lab was in the same building as the local senior center where she had been a volunteer, and she ran into several acquaintances.

“Oh I heard you have been sick. You will be fine.”  One, two, three people expressed these four words, trying to be reassuring, clearly not knowing how very sick Bette is.

Going back for tests another day, a woman who had been a volunteer with Bette simply said, “I want you to know how much we miss you. I always enjoyed your company.”

Nice.

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Thoughts and prayers

Sunday, April 19th, 2009

(WARNING: Please don’t read this post if you’re easily offended.)

“Our thoughts and prayers are with you,” said almost every card and call that came to my mother and my sisters and brothers and I once the word of Bette’s terminal cancer prognosis got around.

Clearly get-well cards weren’t appropriate. Nor were sympathy cards.

So people wrote messages in lovely blank notecards, the most common being, “Our thoughts and prayers are with you. Please let us know how we can help.”

There was an avalanche of religious cards. Prayer cards. Special masses. Cards about saints who we-who-had-rarely- gone-to-Sunday-School had ever heard of.  One person even sent a small gift — a plastic night-light of the Virgin Mary.

My sister Susan, from the Bible belt, was especially showered with “thoughts and prayers.”

The exception was her teaching partner. When Susan told Jo the news, Jo in her Australian accent loudly blurted, “Oh, fuck.”

At which point Susan and Jo both choked and cried.   Jo was the first person to say what we felt, what we wanted to say, what we wanted to hear. Oh, fuck, our always youthful, always strong 74 year-old mother has just learned out of the blue that she’s going to die soon.  Fuck, fuck, fuck.

Until this I probably sent “thoughts and prayers” to people too. Empathy is loosely defined as ‘putting ourselves in the other people’s shoes.’ Know that the person dying and those closest to her may feel like their shoes are a size too small and the blisters are killer. Instead of neutral niceties they may welcome the chance to be able to talk with you about how awful it all is.

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