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This month marks the first anniversary of my mother’s death. Even though she’s been gone for a year, in many ways I’m just beginning to mourn her. My mother and I were both sick with cancer at the same time, and my mother died while I was still in treatment. In some ways, our concurrent illnesses served as a point of connection between us—and ultimately as something that permanently separated us. It wasn’t until I was cancer-free that I was able to begin to grieve for my mother in a real way, perhaps because I needed my strength to help me get well, perhaps because I needed my mother to help me get well. And once I was well, I could begin to let her go.

In the last few months of my mom’s life, I was undergoing chemotherapy for my invasive molar pregnancy every other week. One week, I’d have an injection every-other day, which would leave me drained and out of it. I’d then have a week to recover, and then another week of treatment. I spent months in this cycle. We would schedule weekends with my parents whenever I wasn’t in treatment, but mostly I missed out on my mother’s last months.

To make up for not being there to support one another in person, my mother and I spent much of our time tethered to one another on the phone. I’d quietly chat with her while I waited for my injection. I’d lie in bed talking to her after her chemo, until one of us felt too tired to speak. I called her on my good days after walking my son to school, while she was resting in her own bed at home. Each day was marked with our phone calls.

When she finally entered hospice care, I knew that I’d need to make arrangements to be at her side while I continued my course of chemo. I envisioned getting my treatment and then just sleeping next to her in bed, and holding onto her hand. I called her doctor to see if his office could administer my chemo while I was there, and made plans to be treated in Washington, DC. 

I never expected that my first day of treatment in DC would be the day of her funeral. My treatment was first thing in the morning, which gave me just enough time to make it to the late-morning service. I walked into the doctor’s office bolstered by my best friend and my cousin. I was dazed and dreading the inevitable questions about my mom. The phlebotomist checked my chart as she prepared to draw my blood. “Sachse?” she said. “Are you…?” She trailed off, knowing she couldn’t ask if we were related. “Yes.” I replied, “Ellie was my mom. She died on Tuesday.” After that, everyone treated me like a precious feather, afraid that with the wrong word I’d blow away. And most of that day, most of that week, I did feel like I could blow away.

On New Year’s Eve, I received my last infusion. I thanked the nurses who had helped me for nine months, drank a glass of champagne, and broke down crying. I cried about losing my mom. I cried that I went through the hardest part of my illness without her. And I cried that she didn’t get to see me in remission and cancer-free. That moment was when I really began to grieve for her.

I had mourned when she died, and I had mourned when we sat Shiva. But after that I turned all my energy and attention to my own health and healing, and I didn’t allow myself to feel the pain of losing her. I needed to be strong enough to fight my cancer, and I couldn’t do that and fully accept her death.

Throughout those last months of treatment my mom would come to me in dreams. In these dreams she would come back to life, and we’d talk about how it was possible that she’d come back to life. I found solace in these dreams. I loved feeling my mom’s presence nearby. And even though I knew she wasn’t coming back, it was comforting to think about the convoluted paths to resurrection she described in my dreams. Since I finished treatment, since I have been living without cancer, I haven’t dreamed about her once. I guess it took being cancer-free to really let go.

This morning, TMZ.com released a story about two things that rarely get mentioned in the same sentence: Rihanna and funerals. Here’s the story: the funeral home that planned Rihanna’s grandmother’s funeral charged Rihanna $150,000 for the funeral, which the superstar singer is refusing to pay. Rihanna claims that she’ll happily pay one-quarter of the amount, but that she didn’t approve the remaining $112,500. The funeral home is suing her for the full amount. 

Although celebrity gossip attracts our attention, there’s more to this story than just a big name. Many people reading this story might wonder, “Could this happen to me? If I plan a funeral, will I unwittingly get stuck with an exorbitant bill?” The answer, briefly, is “no.” And, if you follow my advice, the answer will be “absolutely not.”

1. Know Your Rights

In 1984, following public scrutiny of the funeral industry, The Federal Trade Commission established a law known as the Funeral Rule. The goal of this law was to dictate certain procedures that funeral homes have to follow so that consumers are protected from coercion, unwanted charges and purchases, and fraud. A key provision in the Funeral Rule is that funeral homes have to provide consumers with a detailed price list before starting any conversation about funeral planning. So know that the funeral home is legally obligated to provide you with a General Price List (GPL) that breaks down all the costs of the funeral. The GPL must cover every item that will appear on your bill. If the funeral director you’re talking with doesn’t give this to you, ask for it! It’s your right.

2. Bring an Advocate

Planning a funeral is emotional. But it’s also a big-ticket purchase, so you want to be on the ball. Bring someone with you to hear details that you might miss, help you make rational decisions, and advocate for you on your behalf.

3. Check the Bill

Funeral directors would rather get paid than sued. They will want your signature on any agreements before they begin to make the funeral. So take the time to review the paperwork and be sure it is to your satisfaction before you sign anything. If there's anything on the bill that you don't want, be sure to bring it up with the funeral director before you sign the contract.

via TMZ.com

For many parents, talking with children about death is a daunting task. Death is a scary topic for a lot of us, and we want to make sure that we "do a good job" when we talk to our kids about this sensitive subject. But the conversation doesn't have to be so hard. To help you talk to your kids about death, I’ve come up with a few helpful tips to make this conversation easier.

Have you talked with your kids about death? What did you say? Do you have any advice based on your experience? Please share in the comments section!

Jane Lotter was a writer, mother, wife, and long-time Seattle resident. She died of uterine cancer last month at age 60, with her husband and two children by her side and George Gershwin’s “Lullaby” playing in the background. With the help of hospice and her state's Death with Dignity Act, Jane orchestrated the event to be the send-off she wanted. And one of the last things she did before she died was write her own obituary. 

Published on July 28 in The Seattle Times, Jane Lotter's obituary began:

One of the few advantages of dying from Grade 3, Stage IIIC endometrial cancer, recurrent and metastasized to the liver and abdomen, is that you have time to write your own obituary. (The other advantages are no longer bothering with sunscreen and no longer worrying about your cholesterol.)

She spoke directly to her husband and her children:

I met Bob Marts at the Central Tavern in Pioneer Square on November 22, 1975, which was the luckiest night of my life. We were married on April 7, 1984. Bobby M, I love you up to the sky. Thank you for all the laughter and the love, and for standing by me at the end. Tessa and Riley, I love you so much, and I'm so proud of you. I wish you such good things. May you, every day, connect with the brilliancy of your own spirit. And may you always remember that obstacles in the path are not obstacles, they ARE the path.

And she reflected on life:

I believe we are each of us connected to every person and everything on this Earth, that we are in fact one divine organism having an infinite spiritual existence. Of course, we may not always comprehend that. And really, that's a discussion for another time. So let's cut to the chase:

I was given the gift of life, and now I have to give it back. This is hard. But I was a lucky woman, who led a lucky existence, and for this I am grateful.

You can read Jane Lotter's obituary in its entirety here. And we suggest that you do, not only because it's moving and meaningful and personal, but because it makes us think: If I were to write my own obituary today, what would I say? How would I explain my life in 500 words? What would I say to the people I love who I'm leaving behind? What would I want them and the world to remember about me?

We'd love your thoughts on this. What would you be sure to include in your own obituary?

via New York Times

Hidden in the back of my closet is a yellowing plastic bag filled with AquaNet-crusted, faded pink, partially broken hair rollers. I have cherished them for the last decade. These were the rollers that my grandma, “Gram,” wrapped her graying blond hair in every night before bed. Although her clothing, appearance, and health changed over the years, the rollers were a constant.

Gram had a will. She meticulously divided her valuables to be sure that everyone received an equal share. Needless to say, the rollers were not included in the breakdown. When I found them left on her night table, though, free for the taking, I thought I had hit the jackpot! To me, these old pink rollers were more valuable than Gram’s jewelry. Because these rollers weren’t just items that Gram owned; they were pieces of her.

It’s interesting to think about our possessions and their “value.” Of course, there is the monetary price that any appraiser can quote. But then, there is the sentimental value, which is arguably more important than any dollar amount.

For me, the value of Gram’s rollers only revealed itself after she was gone. Had she decided before her death that she was done rolling her hair and the plastic was going in the garbage, I wouldn’t have cared, really. But now that she is gone they’ve taken on a whole new meaning. These gems instantly reminded of the nights I stayed at my Gram’s house when I was little, eating Entenmann’s crumb cake in our pajamas as we watched my favorite movies, Gram’s hair up in those rollers.

And so these crappy pink plastic rollers have come to stand for the moments that Gram and I shared when we were alone. I keep them in my closet, rather than prominently on display, because they’re private to me, and they have meaning only to me—no one else in my family is interested in the rollers. And that makes them all the more precious.

I know, from talking to friends and hearing other people’s stories of loss, that I’m not the only one holding on to the seemingly insignificant possessions of those I’ve loved. Do you have any material things from the people you’ve lost that mean the world to you? I’d love to know! Please share your story in the comments section below.

George Saunders, a writer best known for his excellent short stories, delivered the 2013 commencement speech at Syracuse University earlier this year. Yesterday, the New York Times printed the speech in its entirety, and there are some powerful and moving lessons worth sharing:

So here’s something I know to be true, although it’s a little corny, and I don’t quite know what to do with it:

What I regret most in my life are failures of kindness.

Those moments when another human being was there, in front of me, suffering, and I responded…sensibly. Reservedly. Mildly.

Or, to look at it from the other end of the telescope: Who, in your life, do you remember most fondly, with the most undeniable feelings of warmth?

Those who were kindest to you, I bet.

It’s a little facile, maybe, and certainly hard to implement, but I’d say, as a goal in life, you could do worse than: Try to be kinder.

...

One thing in our favor:  some of this “becoming kinder” happens naturally, with age. It might be a simple matter of attrition: as we get older, we come to see how useless it is to be selfish—how illogical, really. We come to love other people and are thereby counter-instructed in our own centrality. We get our butts kicked by real life, and people come to our defense, and help us, and we learn that we’re not separate, and don’t want to be. We see people near and dear to us dropping away, and are gradually convinced that maybe we too will drop away (someday, a long time from now). Most people, as they age, become less selfish and more loving. I think this is true.

This advice feels at once idealistic and practical, grandiose and mundane, ambitious and imminently do-able—which is to say, the type of advice that we can follow in large and small ways. As we think about the lives we want to lead and the way we hope to someday look back on the lives we have led, practicing kindness seems like a good place to start.

via New York Times

“You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.”

This was the invitation that friends received for Jay Lake’s wake (a ceremony traditionally held before a funeral, after someone has died). In case the phrase “pre-mortem” didn’t tip you off, it was an unusual event. Because, like everyone else, Jay Lake will someday die. Unlike most, however, Jay threw himself a wake before the end of his life.

Jay is a science fiction writer, avid blogger, and cancer patient. He’s been living with colon cancer since 2008, and earlier this year received a diagnosis of nine to twenty-four months to live. But “the man who has never passed up the chance to poke cancer in the eye and laugh about it” didn’t take this sentence lying down. Instead, he threw himself a wake while he was still able to attend—and turned what could have been a morbid affair into a beautiful, humorous, and personal celebration of his life.

Jay wasn’t only alive at his wake—he was the life of the party! 

I love the idea of a “live wake,” and this isn’t the first one that I’ve heard of. While “live funerals” and “live wakes” aren’t exactly commonplace, I hope that the idea of celebrating life and accepting the inevitable will become more conventional. By acknowledging our own mortality, honoring the lives we’ve led, and doing it all while we’re still here, I think that we, as a culture, can have the lives and deaths that we want and deserve. As a speaker at the JayWake pointed out, “We are all terminal, after all.” 

via Metafilter
 

Five lessons from guest blogger Roz Jonas

My father died, suddenly and unexpectedly, at the age of 79. He and my mother had lived for almost 50 years in a three-story home that, over time, had grown too large for two people—and then quickly became much too large for just one. My mother lived alone in the big house, but because she did not know how to drive, she was dependent upon me and others for her transportation needs. After a year, she asked for help in selling the house and moving into an independent living facility, the kind of caring community that would meet her needs as she grew older. While she waited for an apartment to become available, she moved in with my husband, our young daughters, and me. Exactly 18 months after my father died, my mother died in our home, just as suddenly and unexpectedly as my father had.

From all of this—experiencing the sudden death of a parent, dismantling a home and a lifetime’s accumulation of treasured items, welcoming an elderly parent into our family, and then encountering death in our home—I have learned valuable lessons.

My father died in a hospital emergency room. The physician who delivered this awful news to my mother and me simply said, “I’m sorry. He expired.” When I found my mother dead in her bedroom, I was obliged to call the police, who must investigate a sudden death before the coroner, and then the funeral home, can be contacted. The police officer who came to our home emerged from my mother’s room and said, “Well, I don’t see a knife or anything.” Only with the passage of time was I able to see these two comments not as thoughtless and uncaring expressions, but rather as reflections of discomfort with death and dying.
Lesson: Do not let the insensitivity of others affect you.

I was so determined to help my mother deal with my father’s death, the end of her 56-year marriage, and the sale of her home and most of its contents, that I neglected to pay attention to my own feelings of grief. I attended to her needs and incorporated her into our family’s life, but I did not pause to reflect on my own loss. By the time my mother died, fresh and accumulated grief hit me like a ton of bricks, and threw me, my parents’ only child, into depression. After months of crying in the shower and the car, formerly the places where I had done my best and most creative thinking, I sought the assistance of a therapist, who helped me to cope with the sadness I felt.
Lesson: Give in to grief, and get help if you need it.

In the weeks and months following the deaths of my parents, after the friendly wave of phone calls and visits and prepared meals had subsided, many well-meaning friends and colleagues—particularly those who had not experienced the death of a loved one—seemed to regard my bouts of sadness as if I’d had a head cold from which I surely must have been long recovered. My husband innocently wondered when we could restore my mother’s room to its former status as a guest room. I felt a kind of pressure to return to normal, but was not yet ready to get there. I felt instinctively that I would know when the time was right—and one day, it was.
Lesson: Grief takes time.

My parents, perhaps as a result of fear of change or just simple inertia, had lived too long in their home. Disposing of that house and its contents was a tremendous and challenging task. Which items to keep, which to sell, which to donate? Each thing brought back a memory of my parents, and at times the decision making process was almost physically painful. Thinking back on it now, many years later, I look around my own home and understand that one of the greatest gifts I can give to my own children is to move while I am able, and to downsize all that I have accumulated in 40 years of marriage.
Lesson: Move while you have the energy and vitality to do so.

For many years, I saved those items that I felt connected me in some way to my parents: the hat, watch, and wrist brace my father wore the day he died; the glasses, robe, and slippers my mother set aside before she went to bed and died. I also kept a corner fringe from the prayer shawl in which my father was buried. These objects represented a tangible link to my parents; I kept them first in my home office, and then moved them to storage in my basement, where I kept them in my mother’s hope chest. And then one day, cleaning the basement, I knew it was time to throw them away.
Lesson: Time does heal all wounds.

Roz Jonas has served as a member of the board and as board chair of NARAL Pro-Choice America, as chair of the board of the Community Foundation for Montgomery County, Maryland, and as a member of the board of directors of the Jewish Community Center of Greater Washington. She is the co-creator of Sarah’s Sisters, a series of programs designed to enrich the lives of Jewish women and create a culture of receptivity to women’s involvement as agency lay leaders. She lives in Maryland.

Scott Simon, host of NPR's Weekend Edition Saturday, has been sitting with his mother in a hospital Intensive Care Unit during her final days. He's been chronicling their time together on his Twitter feed with grace, humor, and heartbreaking honesty.

via Metafilter

For as long as I can remember, every night when my dad would arrive home from work and turn the handle on the apartment door, my family’s 100-pound black Labrador, Maggie, would run full speed ahead towards it and launch herself onto him. It was her (slightly slobbery) way of welcoming him home. After my dad got sick, though, we decided we had to put an end to the ritual.

When he returned home from the hospital, weak from the blasts of chemotherapy he’d received, we were concerned that Maggie would knock him down. So I entered the apartment first and held Maggie by the collar, hoping I was strong enough to restrain her. As dad walked in I tightened my grip, ready for Maggie to fling herself at him. And Maggie did use all her might to break free from me. But then something amazing happened: she walked over to dad and started linking his fingers. She was gentle and restrained and yet still full of love. And from then on dad’s loyal four-legged companion remained by his side at all times, sometimes even nudging the port in his chest with her cold wet nose.

We thought Maggie was incredible—so intuitive! So understanding! And, to be fair, she was. But my family was not alone in our magical experience of our dog’s capacity for love and comfort when my dad was sick. She was a dog, and canines in general are impressive; in so many ways, dogs just know. And because they are such extraordinary creatures, they’re hired not only to assist the physically impaired (guide dogs for the blind, for example), but also to help those who are in need of emotional and psychological support.

Over 40 years ago, a nurse named Elaine Smith noticed the positive reactions that hospital patients had to a chaplain’s Golden Retriever who would go on rounds with him. Smith started taking dogs to nursing homes, where the dogs brought both companionship and comfort to the elderly. In 1976 she founded Therapy Dogs International, a volunteer organization that helps certify comfort dogs, known as “therapy dogs,” and makes them available to people who need them.

Now, dogs are welcomed in hospitals and in therapeutic settings, where they recognized for bringing happiness and psychological comfort. After the school shooting in Newtown, CT, a team of Golden Retrievers was brought into the classrooms to soothe the children who witnessed the tragedy. And after the Boston bombing earlier this year, dogs were brought to visit the victims in the hospital.

Dogs have the instinctive ability to sense when a person is in need of love and affection, and also to provide it. Maggie didn’t know any of the details of my dad’s illness, but she did know that he needed love—and she gave him that, fully and selflessly.

For more information on comfort dogs, visit Therapy Dogs International, Pet Partners, or Lutheran Church Charities.