caregivers Archives - Jane Heller

My book is "eye candy!"

February 2, 2015

Chronicle Books, publisher of my caregiver survival guide, You’d Better Not Die or I’ll Kill You, just gave me the heads up that the book has been selected for their special, month-long “Eye Candy” ebook sale! What does that mean? Special savings, that’s what! For the entire month of February, caregivers and the people who care about them, will be able to go to any ebook retailer and purchase the ebook edition at a substantial savings. I’m talking about a book that’s been priced as high as $14.99 selling for $2.99 and less in February – no small deal, right?

I came up with the idea for You’d Better Not Die after spending 20 years as the caregiver to my husband Michael, who has Crohn’s disease and who sent us both on a journey that involved multiple hospitalizations and surgeries and home health nurses and many, many doctors. I wanted to write about my experience with a humorous spin – not as a Debbie Downer, in other words, but as someone who could stare the dark days in the face and still find silver linings in them. I also sought out caregivers with stories about caring for a parent with Alzheimer’s, a husband with M.S., a daughter with anorexia, a son with autism and much more. And finally I went to the experts – lots of them: therapists (how do we cope when we’re so stressed we can’t see straight?), a dietician (what the heck do we eat that’s healthy when we’re stuck with hospital cafeterias?), fitness coaches (how are we supposed to exercise when we’re sitting in a hospital room all day?), a bestselling cookbook author (who has time to cook a nutritious meal with flavor?), meditation teachers (how do we quiet the mind when it’s racing to check off all the items on our “To Do” list?), nurses (how should we deal with the cranky ones who won’t answer our questions?), and much more.

Since the book was published, my perspective as a caregiver has broadened. I did write about my mother’s increasing dementia in You’d Better Not Die, but I have a whole new appreciation for what caring for an elderly parent is all about. Mom recently turned 98 (her older sister just turned 100, so longevity runs on that side of the family) and while still very sharp at times, she’s more and more dependent on her full-time caregiver to fill in the blanks. She’s especially disoriented in the late afternoons and evenings when the infamous “sundowners” set in, and her confusion is a source of great frustration to her. Over the past few years I’ve been her long-distance caregiver since I’ve lived in California and she’s in New York, but I’m moving back east this spring and one of the main reasons is to be there for and with her in whatever ways she needs me – from interacting with her doctors to help with paying her bills to spending time with her and trying to brighten her days. She lives at home – at one point she wanted to move to an assisted living community and then changed her mind – and is isolated to a certain degree, and I hope my presence will mitigate that.

Meanwhile, I’m very heartened by the wonderful reader responses to You’d Better Not Die, along with the critics’ reviews. I write romantic comedies for the most part, so a caregiver book was new territory for me. But take a look at some of the words of praise on Goodreads. Wow.

“Our sweet daughter gave me this book for Christmas – and I took my time reading and thinking about every chapter. ‘A family caregiver is caring for somebody who has something that can’t be fixed-i.e., it doesn’t have a cure at this point in time. That requires a totally different medical approach.’ (page 284) This definition of a caregiver includes most of my family and friends…who don’t really see themselves as caregivers, but who, like me, struggle with all of the issues associated with this role as we care for a parent, spouse, child, or friend. This book is filled with simple, useful, needed advice based on the experiences of Jane, and her friends, family, and health care professionals that are helping her make sense of this complicated issue. Their insights and comments have helped me change how I see my own role as a caregiver and how I see and serve others filling this critical role.”

“I’ve been reading Jane Heller’s You’d Better Not Die or I’ll Kill You, and it’s exceptional. Two hours later (with lots of laughs and tears), I finished it from cover to cover. Honestly, after doing home health with a 87 year old , with her declining health and increasing dementia, I believe this book will be a godsend to so many. It’s unique in its scope – anecdotal, voices from a cadre of health care professionals as well as peeps like us, and very personal. I’ve experienced all of it – working nurses, asking questions, keeping records, doing follow-ups, arranging ambulances and rehab and homecare and wading through the Medicare stuff….and the author has put ALL OF IT down to help and to use….and ultimately, to speak of love and how it is tested….well, nicely done.”

“I cried at many points in this book because I recognized so much of my own experiences in the stories in this book. Lots of good advice, even though as a caregiver, you’re probably just too exhausted, frustrated, busy to take it. Excellent book that should offer solace to those of us who often feel alone in their challenges.”

I love hearing from readers and talking to other caregivers, so feel free to send me an email and let me know how you’re doing on your caregiving journey. If you haven’t read the book or you have a friend or family member for whom you’d like to buy it, February is the month. For the bookseller links to the Eye Candy Special Savings Promo, go to my home page on this site.

Take care!

The Beauty of Web Cam Shows

November 26, 2012

I did a national TV show today to promote YOU’D BETTER NOT DIE OR I’LL KILL YOU and I didn’t even have to leave my house. The Huffington Post launched HuffPoLive a few months ago and invited me to be a guest for a segment on caregiving and National Caregivers Month. Here’s the link in case anyone wants to copy, paste and watch:

http://huff.lv/TmnBp

(I’m sure there’s a way to embed it here, but it beats me how.)

Anyway, I’d never done a show that was live streaming on the web, so I wondered if I’d like it. Result? I loved it. How easy! How convenient! You can reach a national audience and not have to get on an airplane – my idea of heaven.

All I had to do was pop in my ear buds, plug them into my computer, turn off my phone so there wouldn’t be any distracting noise, click on the link for the Google Hangout chat and there I was – on the show with the host and three other guests for a half-hour.

The best part? You can only see me from the waist up, so I didn’t have to get out of my grungy yoga pants and worn-out Ugg slippers. Again, my idea of heaven.

Actually, if the segment helped other caregivers and made them feel less alone and bewildered, that would be the best part.

When Turkey Madness Sets In, Take A Relaxing Break

November 20, 2012

Here’s my yoga teacher, Christine Gordon, with another 10 minutes of zen-ness. Whether you’re rushing around trying to pull a Thanksgiving meal together, dealing with noisy friends and family over the holiday, or serving as the stressed out caregiver to a loved one, Christine’s latest meditation is a guaranteed soother. Check it out.

As I write in YOU’D BETTER NOT DIE OR I’LL KILL YOU, taking a mental vacation is key to maintaining a sense of balance – never more so than during this Thanksgiving season.

Sibling Rivalry, Caregivers?

November 9, 2012

Help is on the way. One of the experts I interviewed for YOU’D BETTER NOT DIE OR I’LL KILL YOU is author and filmmaker Deborah Hutchison. Deborah had the genius idea a few years ago to put together a book of agreements to ease the tension that can arise in sticky situations like loaning/borrowing money from a friend or family member and setting guidelines for kids that move back home after college – all under the heading of “A Sane Approach to an Emotional Issue.” One of the agreements deals with Caring for Our Aging Parents, and it offers siblings a way to communicate with each other about how to divvy up responsibilities for elderly parents without resentment over who’s doing more and who’s not doing enough. Deborah has been the primary caregiver to her own mother, who has Alzheimer’s disease, so she brings a personal perspective to a tough subject.

Here are clips from our interview.

When To Move Mom/Dad Into Assisted Living

November 8, 2012

Not a subject anyone wants to have, but once you get to a certain point in your life there’s a chance your mother or father will need more care than he or she is getting at home – or that you can provide in your home.

My mom is 95 and still lives at home with her caregiver, still goes to her book group, still sees friends for lunch or dinner. But for some, it’s better not to be isolated and instead live among men and women their own age.

As an adult child of an elderly parent, the question is always how to step in if Mom or Dad is stubborn/in denial/cognitively impaired? And how can we stop feeling guilty about stepping in?

Liz Schierer, the director of memory care at Maravilla, a seniors community in Santa Barbara, put up with all my questions during the interview we did for YOU’D BETTER NOT DIE OR I’LL KILL YOU. Now, she shares some of her wisdom on the “Cam.”

How To Stay On A Nurse's Good Side

November 6, 2012

One of the experts I interviewed in YOU’D BETTER NOT DIE OR I’LL KILL YOU is Kelli Jackson, a critical care nurse. Kelli talked about the ways caregivers get on the nurses’ nerves as well as the ways we endear ourselves to them. Why does any of this matter? Because when you’re an advocate for a loved one with a medical problem, you need to do whatever it takes to get the best care for your child/spouse/parent. As Kelli says, “If you treat nurses well, they’ll be your best friend.”

Here are a few clips from our conversation. You go, Kelli!

Take 10 Minutes, Close Your Eyes, and Relax – Ahhhhh

November 5, 2012

One of the themes of YOU’D BETTER NOT DIE OR I’LL KILL YOU is the need for caregivers to take better care of themselves. After I’d written the first draft of the manuscript, I took my own advice and sought out Christine Gordon, who teaches yoga here in Santa Barbara. Not only does she give me a great workout twice a week, but she guides me through various relaxation meditations at the end of each practice. No matter how stressed I am or what thoughts are running around in my head, Christine enables me to take some “quiet time,” as she puts it, and go inward.

I’ve made two videos of Christine, the first of which is above. I urge anyone – caregivers and non-caregivers alike – to grab 10 minutes and watch/listen to this meditation (and the one I’ll post tomorrow). I guarantee that you’ll emerge feeling more rested and relaxed, which is no small thing.

My Animated Self…A Sneak Peek

October 10, 2012

In preparation for the video book trailer for “You’d Better Not Die or I’ll Kill You,” the animators at Expanded Books have been busily creating images for the “characters” in the video. First up: me.

Here’s what I looked like the day of the shoot.

And here’s what I’ll look like as a cartoon.

Want to know four reasons why I love my cartoon self?

Her hair is yellow-blonde, like Betty in the old “Archie” comics. (I always preferred her to the snotty Veronica.)
She’s wearing red shoes – ballet flats instead of the grungy black flip-flops I was actually wearing that day.
She’s curvier than I am.
She doesn’t have a single wrinkle and looks 1,000 years younger than I do.

Yes, her head is shaped like a melon, but you can’t have everything.

Now Playing on My Kindle: "All Gone: A Memoir of My Mother’s Dementia. With Refreshments"

October 7, 2012

I was curious about this book after reading excerpts and enjoying Alex Witchel’s pieces in the New York Times. She’s an excellent reporter and keen observer of people. In “All Gone,” she reports on and observes – with both love and anguish – her own mother, who suffers from dementia.

Though Witchel has siblings, she was the daughter who lived nearby, didn’t have young children, knew how to find the best doctors, was utterly devoted to her mother and always had been. But as she discovered, being a caregiver isn’t for the weak-willed. It can consume you if you let it.

Witchel paints a fully realized portrait of her mother – a woman who had a career even when it wasn’t fashionable, a woman who valued intelligence above all else, a woman who, like most Jewish mothers, wanted her daughter to marry well and have kids.

We follow her mother’s decline – from the memory lapses to the mystifying behavior – as well as Witchel’s own journey into adulthood, excelling in school, blossoming as a writer, marrying the Times‘ Frank Rich (now with New York magazine), becoming a stepmother to his sons.

I related to Witchel’s story in so many ways as I’m sure anybody with a parent suffering from cognitive impairment will. My 95-year-old mother is still pretty sharp – i.e. if she catches you saying “Between you and I,” she’s quick to correct. She walks on the treadmill and goes to her book group and has the best vocabulary in the entire world, but she has memory lapses, becomes disoriented when trying to process information, and asks the same question a million times. Fortunately, she has a big help in Sandy James, caregiver extraordinaire, who lives with her and makes sure she’s healthy and socially active.

I love that Witchel included recipes in her book. They’re the connection she still has with her mother and they give what could have been a downer of a story some levity. Her touchstone is her mother’s meatloaf. Mine is Mom’s stuffed cabbage.

As a caregiver, I appreciate it when others share their stories, warts and all. We all make mistakes in our efforts to “fix” our loved ones, but it’s reading about the lessons learned that’s most satisfying. “You’d Better Not Die or I’ll Kill You” is full of my lessons learned. I’m eager to share them when it goes on sale in a few weeks.

Next up on my Kindle: “Where’d You Go, Bernadette,” the new novel by Maria Semple. It’s hilarious and I’m loving it so far.

When Books Hook You Up With Terrific People

June 23, 2012

One of the best aspects of being a writer isn’t necessarily the act of writing itself; ask any author and he/she will tell you it can be torture sitting alone in front of a computer screen on days when you’ve got nothing in your brain except cotton balls. What’s fun is getting out of your head, getting out of your office, getting out of your house, and venturing into the world where there are people who not only love books but who are doing amazing work of their own.

I’m reminded of how broadening all this venturing out can be every time I do a book tour or go exploring for research or reaching out to people and organizations when it comes time to promote my books.

Case in point? As Chronicle Books and I gear up for the November publication of YOU’D BETTER NOT DIE OR I’LL KILL YOU: A Caregiver’s Survival Guide to Keeping You in Good Health and Good Spirits (I’ll be posting the cover next week!), I drove over to Visiting Nurse & Hospice Care of Santa Barbara, an organization that’s been around for over 100 years, providing my community not only with superior nursing and hospice services but also grief support and counseling to families and caregivers. These folks are angels, pure and simple.

Although my caregiver book is upbeat and even irreverent in some ways, it’s also got a chapter on death and dying, a subject that’s coming into its own these days as more and more people are open to talking about it. I thought it would be great to offer up my book as a way to celebrate the work of VNHC, so I met with Pauline Jones, the organization’s COO.

Pauline_Jones_LoRes — Pauline Jones, COO

Pauline is one of those women you adore on sight. A nurse herself, she oversees a staff of 300+ and has more energy than the proverbial Energizer Bunny, plus she smiles easily and exudes warmth and grace. She and I kicked around ideas for ways she might put together an event, during which I would talk about the book to 100 or more guests – an event that would provide laughter and leave everybody feeling good about life, even if they’re dealing with a loved one with a medical condition.

I hope the event comes together. But just spending an hour in the company of someone so inspiring was enough for me yesterday, and I came home ready to tackle the computer once again.

The Sweetest Thing Happened….

April 29, 2012

I wrote about our new neighborhood bakery, Montecito Confections, in a previous post but I have to give the owner another shout out.

Michael’s favorite dessert is lemon meringue pie. He makes a pretty good version himself and fancies himself as a connoisseur. When he sampled Montecito Confections’ pie, he said, “This is the best I’ve ever tasted.” It was that good.

So I started popping into the shop twice a week to pick him up a slice (and to get one of their enormous double chocolate chunk cookies for me). Yesterday I arrived late in the afternoon, just as the bakery was about to close. Michael has had a rough time with his Crohn’s disease lately and I really wanted to get something to cheer him up.

Luckily, there was a whole pie sitting in the refrigerated case. I said hello to Katie, the owner, and told her I was there for my husband’s usual slice and as she lifted the pie out of the case she said, “Why don’t I just give you the whole thing.”

I said, “Are you kidding? The whole pie?”

She said, “I make them fresh everyday, so it would only go to waste. It’s my gift to your husband.”

I was so taken aback – it’s all-too-rare when someone does something really nice for someone else, isn’t it? – but thanked her profusely. I didn’t tell her about Michael’s chronic illness or how difficult life is for him at times (and by extension for me). But as I walked into the house and watched the look on my husband’s face when he saw me holding the pie, I realized that what made Katie’s gesture that much more special was that she didn’t know our whole story; she was simply being kind.

Lots Going On Around Here

January 20, 2011

Hey, everyone!

Remember when I used to write “Dear Readers” letters on my home page? Well, now I can stay more current – and interactive – by posting regularly on this new blog and responding to your comments. (Also on the site now is my long-running “Confessions of a She-Fan” blog, which I moved over from Major League Baseball’s blogging site and which, I’m pleased to report, has been the #1 fan blog there.)

Here at “Mainly Jane” I’ll be providing updates about my books and news of Hollywood-related deals, explaining why I loved Nora Ephron’s latest collection of essays but didn’t think Ricky Gervais was amusing at the Golden Globes, talking about whatever seems relevant at the moment. I’ll also be sharing my running dialogues with my husband Michael, who seems to trigger lots of ideas for my books and screenplays. (Don’t worry. He’s a good sport. He’s used to being “material.”)

Michael at Thanksgiving — The "Michael" in question

Let me me get things started by officially announcing the new book I’m working on. No, it’s not a romantic comedy. (Sorry to those who’ve been waiting for me to go back to writing fiction. I have a novel in the computer, I promise, but it’s waiting its turn.) The nonfiction book is called (drum roll, please):

You’d Better Not Die Or I’ll Kill You:

A Caregiver’s Survival Guide to Keeping YOU in Good Health and Good Spirits

As Publishers Lunch reported it in their announcement today, it’s a “companion for caregivers, told in a mix of humorous vignettes and essential info, drawing on personal experience and outside expertise.”

Which is another way of saying it’s not going to be a depressing book about illness; there are plenty of them out there already. And it’s not going to be a dense reference full of resources; caregivers don’t have time for themselves, let alone for a heavy tome. If the perennial bestseller What To Expect When You’re Expecting is a pregnant woman’s best friend, I’d say You’d Better Not Die Or I’ll Kill You will be a caregiver’s best friend. There are an estimated 65 million caregivers in America right now, whether caring for a parent, a child, a spouse or a close friend. My hope is to reach out to every one of them with the book. Chronicle is the publisher and I anticipate that they’ll schedule release sometime in 2012. They do such great things with graphics and design, so I’m very excited to join their stable of authors.

And my editor is Leigh Haber, who acquired Confessions of a She-Fan for Rodale back in ’07. She’s one of the smartest people I know, so she’ll undoubtedly help to make the book the best it can be.

Where does the title come from? Michael. He has Crohn’s disease, a chronic, auto-immune disease of the gastrointestinal tract that causes intestinal obstructions, severe abdominal pain, and other not-so-lovely symptoms. He’s been hospitalized nearly 100 times since he was diagnosed as a child – 5 times in the past year alone – and had many surgeries. Each time he’s on a gurney, about to be wheeled into the operating room, I lean over to kiss him and say, “You’d better not die or I’ll kill you,” and he’ll laugh and make us both feel better.

The book is intended to make other caregivers feel better too – physically and emotionally. It will include my funny stories about life with a chronically ill husband (yes, there are funny moments and it’s important that we celebrate them), as well as advice from experts in a variety of fields on a variety of subjects – from how caregivers can get a decent night’s sleep to how we can make a doctor answer our questions even when he/she has one foot out the door. I’ll also feature anecdotes and inspirational words from other caregivers, so if you have a story to tell or know someone else who does, please leave a comment here or contact me via the “Contact” page on the web site or the links to me on Twitter or Facebook.

Over the years I’ve had so much mail from readers who’ve said: “Your novels have gotten me through a tough time.” And: “In spite of my medical condition your stories made me laugh.” And, best of all, I once got a letter from a psychotherapist who wrote: “I prescribe your books to all my depressed patients. They’re better than Prozac.” I really hope You’d Better Not Die Or I’ll Kill You will have the same prescriptive effect.

P.S. Before I finish up with my inaugural “Mainly Jane” post, I need to give a huge shout out to Kristen, webmaster, web designer, web guru, and (most of all) friend. You may have noticed that the web site’s home page has been refreshed and enhanced with graphics and links and all the stuff I could never in a million years figure out how to do. (All that in addition to creating the two new blogs.) I met Kristen when I was living in Florida writing novels and she was in New York handling the Soap Opera Digest web site. Now she and I are both in California and, although she has a full time job in the web world, she continues to make time for me and this site – and for that I’m eternally grateful.

Yes, she’s a Red Sox fan and, yes, I’m a Yankee fan, but we co-exist like civil Democrats and Republicans, which is to say we rarely discuss baseball.