caregiver book Archives

Following in My Mother's Footsteps

June 1, 2015

A few years ago, when Mom was still able to fly across the country and visit me in California every January, I bought her a fancy tracksuit at Neiman Marcus for her birthday. It was black velour with little rhinestones on the side front pockets of the zip-up jacket, and she loved it. She not only wore it for lounging around the house, but she wore it on the treadmill for her early evening workouts while watching the news.

Yes, treadmill, the professional-grade machine that had a prominent place in her finished basement and was so big it dwarfed her. The woman was in her mid-90s but utterly disciplined about going on that machine every day and walking for an hour, and she’d been sticking to her exercise routine for years. It kept her trim. It kept her feeling productive. It gave her a sense of control, which became especially important when her memory began to deteriorate and she needed to rely more and more on Sandy, her full-time caregiver, who filled in the blanks when she couldn’t remember where she was going or why. She did her laps on the treadmill when she could no longer contribute to her monthly book group discussion and stopped going. She did her laps on the treadmill when she could no longer tell you who was president. She did her laps on the treadmill when she could no longer drive a car. The treadmill was her touchstone, a way to prove to herself and the rest of us that she was still in charge of her body and mind. She even got a new, more high-tech model not long ago, as if to say, “I’m still here. I’m still me.”

And then she stopped using the treadmill the way she stopped watching the news. At 98, she’s unsteady on her feet, shuffles more than walks, needs help getting up from the sofa.

But did she admit any of that when I broached the subject of my taking the treadmill to my new house in CT so I could walk in inclement weather? Absolutely not. Here’s how the conversation went.

Me: “Mom, how would you feel if I bought the treadmill from you, since you don’t use it anymore and I need to exercise indoors now that I moved here?”

Mom: “What do you mean? I still use the treadmill every day!”

Me: “Uh, no you don’t.”

Mom: “Of course I do! I go downstairs and walk for an hour!”

Me, getting the picture and not wanting to agitate her: “Right. Well then, never mind. You keep it. Absolutely.”

A few minutes later, Thelma, who was covering for Sandy that afternoon and whose kind and gentle manner calms Mom, came into the room, sat down with us and said very diplomatically to my mother, “Jane would really like to have your treadmill. Wouldn’t you like her to have it? You don’t need it anymore.”

Mom: “Of course. Why shouldn’t she have it. It’s not even a question.”

It was as if I hadn’t asked the first time and gotten such a negative reaction, as if this were an entirely new subject. Now I didn’t know how to proceed. The last – and I mean the very last – thing I wanted to do was strip my mother of any vestige of the life she’s enjoyed, the life that has enabled her to live so long and so well, not to mention take advantage of her memory lapses. If she felt the treadmill was still important to her, then that was that and I wouldn’t bring it up again. I’d keep looking for a used one on Craigslist. No biggie. But if she didn’t have a problem with me taking it, that would be great too. Which was her “real” answer? To hang onto her treadmill or relinquish it and, perhaps, her sense of independence?

I went home and resumed my Craigslist search – until Sandy called.

“Your mom wants you to have her treadmill,” she said. “We talked about it. She knows she can’t use it anymore.”

I asked “Are you sure?” over and over again. This was tricky terrain for me, as I said. I wanted to respect my mother’s wishes, but I’d been confused about what they were.

“I’m sure,” said Sandy. “Besides, I’m not letting her use it. It’s not safe for her now.”

Not safe for her now. Sandy’s words made the decision easier. She was the one living in the house with Mom. She was the one who helped her bathe and gave her her medications and held her hand when they crossed the street. She made me understand that taking the treadmill would be an act of care for Mom, not a theft of her identity, as well as an act of care for me, for my health, given my much-too-sedentary lifestyle. And wasn’t that what good caregiving was all about? A balancing act between taking care of loved ones and taking care of ourselves? Hadn’t I written a book on that very subject?

The treadmill is now in my basement. The first time I turned on the TV news, stepped onto the machine and began to walk, I teared up. I pictured Mom on that thing, watching the news, hardly breaking a sweat, and I felt sad that I’d lost the mom she used to be. And then I quickly rethought my visualization. Instead, I imagined her standing off to the side cheering me on. “The treadmill was a big part of my life and now I’m passing it on to you, dear,” I heard her say. And then, because my mother has a sense of humor, I also heard her say, “Just don’t be a slacker and stop using it.”

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!

Scenes From My Video Shoot For "You'd Better Not Die"

September 12, 2012

What a fun day! The crew from Expanded Books came to the house from L.A. to shoot a video trailer for my new book. I wrote a script for the two-plus minute video that I kept revising right down to the last minute. I have new appreciation for actors now, because memorizing every word of that script was hard, as short as it was. But before I delivered my lines, I got made up by a pro named Patrice Ryan, who’s painted the faces of many a movie and TV star.

MAKEUP — the "before" picture, complete with hair in rollers

I told her I wanted to look like me only a whole lot better, and she obliged by giving me eyes that popped but didn’t go all raccoon.

Once we got rolling I really enjoyed the process, probably because I was allowed to “cheat” by glancing at the script every now and then.

JANE WIDE — taking a sec to get my words just right

The main thing is that I was able to look right into the camera and talk to the 65 million caregivers in America. I wanted to tell them that I wrote “You’d Better Not Die” for them – by sharing my own caregiving story with my husband Michael, by introducing the other resilient caregivers I interviewed and by providing advice from experts. The last line of the script invites viewers of the video to write to me with their own experiences and join the conversation. I sure hope they will.

JANE SCRIPT — "Got a story of your own? Check out YOU'D BETTER NOT DIE and join the conversation."

Oh – in case anyone’s wondering, we shot the video in my office, with me in front of a green screen, because we’ll be using animation. I’ll be “talking” to characters that Expanded Books will create, and I can’t wait to see what they come up with.

Chivalry Is Not Dead

April 15, 2011

I’ve been doing lots of interviews as I continue to write and research my survival guide for caregivers. I record the in-person interviews on a digital voice recorder, but I’ve been using a micro-cassette tape recorder for the phone interviews. (The sound quality is better with the phone and the cassettes, for some reason.)

Twice now the cassettes have broken in mid-conversation and the tapes just stopped recording – without my realizing it. I was panic stricken, figuring the material was lost, until I remembered a man named Dave Sommers who came to my rescue for the exact same problem in ’07 when I was writing the “She-Fan” book.

When a cassette broke back then, I frantically searched in the Yellow Pages under “audio” and “video” and found a company called “Master Tracks Recording & Multi-Media.” A man named Dave Sommers answered my call and said he would try to put my tape back together. When he succeeded – in, like, a day – I was overjoyed and thanked him profusely.

I called him again, praying he was still in business, still at the same number, still living in Santa Barbara. Victory! I left a message that must have made me sound totally hysterical and he called me back within minutes – from the beach! He was enjoying himself on a warm, sunny day but still made time to return my call. Once again, I was grateful.

And once again, Dave came to my rescue and fixed a cassette. He said he has a new business too. He sells a natural product called Ganoderm (http://www.myganocafe.com/dave), which is designed to make us all healthier, no matter what ails us. I’m all for that.

He also told me about a way I can record phone calls by using my computer, which will mean no more broken cassettes. Whew.

If You're a Reader of NYTimes.Com on Tuesdays…

March 12, 2011

…you probably read the Wellness Blog that features Martha Rose Shulman’s “Recipes for Health.” They’re fantastic recipes because the dishes are relatively easy to prepare, flavorful and nutritious.

As a fan of the blog, I reached out to its author last week to see if she’d be willing to talk to me for my caregiver book. I thought it would be helpful to offer ways that those of us who care for a child, spouse or elderly relative can stay healthy through food – something I neglected to do when Michael was in the hospital a bunch of times last year.

I’d leave the hospital at the end of the long, stressful day, grab some takeout on the way home and then wolf down whatever I’d bought in about five minutes while I stood at the kitchen counter watching CNN. Not much of a meal. Not much of a respite. Not much of a smart way to treat my digestive system.

I suspect that a lot of caregivers eat on the run, not wanting to expend the time or the energy to cook a decent meal for themselves. That’s where Martha Rose Shulman comes in. She did agree to be interviewed and we had a very informative chat a few days ago. What a nice woman. She shared what she cooked for herself when her son was in the hospital with a brief illness, what she thinks are the important foods to have in our diet as well as in our pantry, why sitting down with a glass of wine and savoring delicious food is one of the best things caregivers can do for themselves.

I told her I wanted to feature some of her recipes in my book and she suggested I take a look at her latest, “The Very Best of Recipes for Health,” a compilation of over 250 recipes from her popular Wellness Blog on the Times‘ web site. I ordered the book from amazon and it arrived today. What a gem!

I just started flipping through it, but I can tell I’m going to want to cook every single thing in it. The photographs alone make everything look mouth-watering. Which ones should I put in my book? I have no idea, but it’ll be fun working my way through the recipes while I’m figuring it out.

Happy Endings Do Happen

February 28, 2011

I interviewed a really terrific woman today for my caregivers book. Actually, “terrific” doesn’t begin to describe her. “Heroic” would be a much more appropriate word.

She’d been married for many years to an extremely active, outgoing guy when one day he had a stroke. A severe stroke. He could no longer speak or walk or do much of anything for himself. Undaunted, she devised a way of communicating with him, stepped up to run their household and attended to his every need (while commuting to and from her full time job, mind you). And then, when the snowy winters in CT made it too difficult for her to take him out for their regular jaunts, she retired from her job and moved the two of them across the country to CA – plus their two cats. Think about that. It’s hard enough to travel alone these days.

They lived in a motel for a month while she scouted rental apartments in the area, hoping to find one that would be on the ground floor, be wheelchair accessible, allow pets. Once she finally found them a place and got them settled, she taught him how to take the bus downtown by himself. Think about that! She also arranged for him to work at the local hospital as a volunteer, doing minimal clerical tasks.

He was thriving in his new environment – until he fell out of his wheelchair and broke his hip. Most of us would have thrown up our hands and said, “Enough!” Not our gal. She put him in rehab for six weeks, brought him home and picked up their routine as if nothing had happened.

Fast forward to the following January. They were coming back from a New Year’s eve party the next morning (yes, she made sure he had a social life too) when she noticed how tired he was. A few days later, he started coughing. Before long, he was diagnosed with lung cancer and given six months. Her first reaction was: “Did we really need this on top of everything else?” Her second reaction was: “But we’re lucky. So many people have worse things.”

Clearly, our gal is a glass-half-full type.

Her husband passed away pretty much on schedule, about a year-and-a-half ago. I asked her how she was doing.

“I’m doing fine now,” she said, going on to explain that after so many years of caregiving she was lost at first and felt the need to fill her time any way she could, with volunteering, support groups, etc.

“You sound good,” I commented. “Not at all lost.”

“I have a boyfriend!”

She said this with the squeal of a teenager. I couldn’t help laughing.

“It’s been two months, and he’s a wonderful, wonderful man,” she said. “You should see the Valentine card he made for me.”

She said this man had taken care of his wife, who had died a year ago after a long battle with MS, and that it was his caring nature that had appealed to her.

“I’m sure your caring nature appealed to him too,” I said.

It was her turn to laugh. “I guess, but he says he loves that I’m fun.”

She’s fun. Think about that! How many of us would be fun after going through hell and back? A truly remarkable lady.

Dear Abby, Thank You For Talking To Me

February 19, 2011

Yesterday I had a phone call from Jeanne Phillips, better known as Dear Abby, the most widely syndicated newspaper columnist in the world with a daily readership of over 110 million. I had contacted her office earlier in the day to inquire about interviewing her for my caregiver book. Her mother, Pauline Phillips, the original Dear Abby, suffers from Alzheimer’s disease; Jeanne stepped in to take over the column several years ago and has been writing it ever since.

I knew how busy Jeanne was (I read somewhere that she gets 10,000 letters a day), but I hoped she’d be willing to share stories about caring for her mother and offer advice to other caregivers – advice being her specialty.

I spoke to her assistant and explained what my book was about. I was told the message would be relayed and was thanked for my interest. I didn’t have any expectation that I’d hear back soon or ever; you put out feelers when you’re researching and you never know who will want to cooperate.

Much to my surprise and delight, Jeanne called a few hours later and said she’d be glad to talk to me. She turned out to be every bit the common-sense voice that so many have come to trust. She was candid and down-to-earth and very giving of her time, and the stories she told me were ones everyone will relate to.

“Next time you’re down in L.A., let’s have lunch,” she said as the conversation was winding up.

“I’d enjoy that,” I said and meant it.