Last year’s adventure helping my mother die was an extraordinary life experience. From it I learned that helping someone during their final months can be inspiring and rewarding in ways that you never thought possible.  You can find superpowers that you never knew you had.

To help caregivers find their superpowers (and stay sane, find courage, and deal with the everyday stuff that is heaped on you) I’ve just finished a soon-to-be-published book: “Be The Noodle: 50 Ways to Be a Courageous, Compassionate, Crazy-Good Caregiver.” Here’s the new web site.

This care giving adventure has no travel guide. No instructions to help us deal with the crazy things that happen — things that no medical, hospice, or traditional how-to-deal-with-impending death books explain.

From the mundane, like dealing with too many banana breads from well wishers and advocating for patient martinis with the oncologist — to the gut wrenching, like not being able to call 911 during a crisis once you sign up with hospice or struggling to be kind and helpful when you feel like a sleepless shrew.

The book should be published in a month. If you’d be willing to read it and post a review on Amazon, I’d be happy to send you a copy for free.  I’d also like to give away books to hospice organizations and priests, rabbis, ministers and other generous spiritual counselors in memory of my mother.  If you’d like me to send one of these folks a book , please email me their information  at lkelly@beelinelabs.com.

As the publication date nears, I will be changing this site to share information from the book and create a space where caregivers can share their own wild and wondrous caregiver lessons and advice.

Warmest regards,

Lois

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.

“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

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.

My younger sister Renie, a successful, buttoned-up business professional, can juggle a zillion things at once. One Friday she called to report on Mom’s meeting with the oncologist in Boston.

“We had a good meeting with the oncologist today. He thinks radiology can shrink the brain tumors and then chemo can help with the lung cancer. The next appointment is ….”

“Stop, Renie,” I snapped. “Maybe all this treatment isn’t right. Maybe it’s going to make Mom sicker and ruin her quality of life, the one thing she wants.”

Radio silence.

Renie was angry. She had taken the day off from work and shepherded Bette through all kinds of appointments, taking notes, being there. What right did I, who wasn’t there, have to contradict her?

We icily closed the conversation, saying we’d talk later.

I felt awful. Renie’s take-charge approach felt controlling to me that day, too black-and-white, too decisive. Like she was in control and not Bette. And, of course, I’m sure I came across as the bossy older sister, always taking over, questioning others’ opinions.

I sent an email the next day apologizing about cutting her off. I thanked her for all she was doing, acknowledging how hard it is for all of us trying to find our way in helping Mom. She wrote back:

Lo,
I know you were reacting to the news – it’s OK to vent on me!
I spoke to the Oncologist this morning and will try to reach the Nurse
Practitioner this afternoon to get more insight on the chemo side
effects, etc.
R

There will be angry words. Pain and sorrow can bring out our ugly sides. Let it go. Let it go. Keep those you love close. Together you’ll be stronger. And you’re going to need all that strength in the coming weeks and months.