About a week before my mom died, she asked me not to leave her side. She was in a hospital cot next to her actual bed at home. I stayed with her, slept in her bed next to her cot at night, and would often lay my arm across the 12 inches of air space between us, letting my skin touch her skin so she knew I was there when she stopped talking and opening her eyes. But after several days of this, I got restless. I took breaks and watched episodes of LOST in the living room. I delayed my return to her bedroom. I took phone calls outside.

These moments spent away from my mother during her final days fill me with regret. What if she woke up and regained consciousness long enough to notice my absence? What if her last living memory was an empty room with no one by her side? When I start thinking like this, my mind feels like a dark, evil rabbit hole of regret that threatens to tear me apart.

I wish I had spent every last moment with my mother, and I wish I had read the eulogy I wrote to her before she died. We exchanged many I love yous while she was sick, but the eulogy I wrote captures everything she was to me and will always be—and that’s a lot more than an infinite number of I love yous could ever convey.

Several months after her death, I had a vivid dream. I dreamt that I was at my mother’s funeral, sitting several rows back. My mother was seated next to me in her nightgown. I looked at her and admitted my remorse about not sharing the eulogy with her when she was still alive. Her simple response was, “No, I didn’t need to hear it,” and she held my hand and turned her face to the rabbi up front. When I woke, it was clear as day to me that my subconscious was trying to soothe the pain of my regret. And acknowledging this made me feel better.

In a similar way, with the help of family and friends, I have learned to accept the fact that my mental health during my mother’s last days was just as important as supporting her while her physical health deteriorated. If an episode of LOST made it possible for me to return to her side, then an episode of LOST is what I needed. The rabbit hole of regret is still there, but I know how to spot it and step around it.

Whether we’re able to consciously or subconsciously reason away our regrets or not, it’s best to be prepared to experience them when we’re dealing with a loved one’s end of life. No matter what, there will be regrets. You’ll wish you had said one more I love you, or you’ll feel guilty about a recent argument. But perhaps if we think of regrets as lessons, instead of missed opportunities or poor decisions, we won’t feel overwhelmed by them.

Because of my regrets, I try to spend more time with family and make sure the people I love know that I love them. Because I didn’t read the eulogy to my mother before she died, I started a blog and am writing for Everplans to share my thoughts and feelings with anyone who wants to listen. In my view, a life of no regrets is a life without lessons learned. And that’s how I’ve come to peace with mine over time.

Gretchen Rubin, author of the mega-bestselling book The Happiness Project, gave Everplans a lovely shout-out on her blog this weekend.

Two of Gretchen's "Twelve Personal Commandments" for happiness are "Do what ought to be done" and "Do it now." When it comes to planning for yourself and your family, these are two sage pieces of advice. Planning for the end of your life can be scary, both logistically and existentially. But making these preparations is one of the greatest gifts that you can give to your children, your spouse, and yourself. We'd like to echo Gretchen's Commandments. Click here to get started.

In the May issue of The Atlantic, Jonathan Rauch looks into the work of two doctors, Dr. Angelo Volandes and his wife Dr. Aretha Delight Davis, who are making a series of videos to help people make better end-of-life decisions. The videos are a response to what Dr. Volandes believes is "the most urgent issue facing America today...people getting medical interventions that, if they were more informed, they would not want."

As an unintended consequence of the advanced state of medical technology and the medical establishment's mandate to save lives, many people at the end of their lives are faced with a problem unique to our times: unwanted treatment. Rauch writes, "The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention."

Though there are no statistics on the number of patients who receive unwanted treatment at the end of life, medical professionals seem to agree that because patients make healthcare decisions without being fully informed, many are receiving unwanted treatments as a default. But most doctors are not prepared or able enough communicators to speak with patients about their options.

And so, in response, Dr. Volandes and Dr. Davis are developing a tool to help patients and families make fully informed decisions around their medical care, and better communicate with their doctors. Their videos show patients with a variety of illnesses, and Dr. Davis explains what the most common treatment options are for the condition, and actually shows people receiving those treatments. Then she suggests that people have The Conversation: an open, honest talk with one's doctor about one's condition, the treatment options, and the benefits and risks or drawbacks of each treatment option.

Rauch describes The Conversation this way, in terms of his own father's care:

The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired.

With his video series, Dr. Volandes hopes to create a platform for true communication between doctors and patients. His goal is that, through systematizing The Conversation, more people will receive less unwanted treatment. Only with communication and The Conversation, and tools like Dr. Volandes' video series, can real change come to the medical establishment's default approach to treating patients at the end of life.

via The Atlantic

Friend-of-Everplans Mark Dimor is producing a documentary that we think is both powerful and important. The film is inspired by the experience Mark had of caring for his wife Donna after she was diagnosed with Stage IV non-small cell lung cancer and given six months to live. Donna immediately began recieving palliative care, which helped her live comfortably and without suffering for three years after her diagnosis—and helped Mark "focus on Donna—not her passing."

Mark writes:

As I look back on my wife’s illness and death, I can see how palliative care and hospice gave us the beautiful gift of life, peace, and time. Because of this approach, I was able to celebrate who she was and the love we shared, rather than concentrate on her death. Her passing was about what we had, not what was lost.

Mark is making this film to help patients and families make the best choices at what is, for many people, the hardest time in their lives. "By making this film," he writes, "I hope to give back what I received through palliative care and hospice. With your help, we can eradicate the fear and misunderstandings so that more people can share this gift of comfort and peace."

via Indiegogo

Tags:

I graduated from business school four months after my mother died. Shortly before graduation weekend, an out-of-town friend called me and said that she wanted to come to my graduation. She insisted that I not feel pressured to include her in any pre-planned activities; she just wanted to be there, watch me graduate, and give me a hug afterward. She never directly said that she wanted to come because of my mother’s death or because she wanted to support me during a weekend punctuated by proud parents and family revelry. But her message was loud and clear.

There were other friends, and even people who I didn’t know very well, who did selfless favors, drove hours out of their way, and made sacrifices, never expecting a favor or even a thank you in return. Those people were my heroes. And this inherent goodness in the people who surrounded me made me feel extraordinary lucky during a time when I otherwise would have felt hopelessly desolate.

In the wake of the terrible tragedy in Boston, I have been reminded of my heroes all week. When I read about the Cowboy Hat Hero or the marathoners who crossed the finish line and kept running to the closest hospital to donate blood, my heart grows just a little larger. Because the truth is, no matter what disaster befalls us, whether it is a terminal illness or cowardly act of terror, the goodness in people will always beat the darkness in one. More lives were saved on Monday than were lost because of these heroes. And when you think the darkest time in your life will leave an enduring, deep scar that will never heal, you’ll find that the love, altruism, and selflessness of others will leave a mark that’s much more prominent.

For most humans, thinking about death is stressful. A new study now shows that acetaminophen, the primary ingredient in Tylenol, may help ease some of that stress.

Researchers at the University of British Columbia, Canada, used the films of David Lynch to induce anxiety in test subjects, and then gave half the subjects acetaminophen and half the subjects a placebo. Subjects who received the acetaminophen experienced remarkably lower levels of anxiety than their placebo-taking counterparts. The results were published in the Association for Psychological Science journal Psychological Science.

via Slate

Today is National Healthcare Decisions Day, a day to inspire and encourage everyone to create advance health care directives. Today, we'd like to help you to start talking to your loved ones about your end-of-life wishes.

An advance directive is a legal tool for stating how you'd like to be treated at the end of life, including the types of medical treatments you'd like or would not like, the type of environment you'd like to be in, and who should make your health care decisions for you if you become unable to speak for yourself.

An advance directive is composed of two parts:

1. Naming a health care power of attorney, who can advocate for your care when you may not be able to
2. Creating a living will, stating the types of medical treatments you do and do not want at the end of your life

There are two main reasons to create an advance directive:

1. To make your wishes known so that your family can care for you in the ways you want at the last stage of your life
2. To relieve your family of the burden of having to make these tough decisions at a difficult time

If you haven't done so yet, check out our directory of State-by-State Advance Directive Forms, find your state's forms, and start filling them out. And if you've already named a health care power of attorney, be sure to direct them to our article on How to Be a Good Health Care Power of Attorney.

Happy National Healthcare Decisions Day. We hope the last stage of your life is wonderful.

What does a good death look like? Photographer Joshua Bright offers one answer to this question with a series of photographs chronicling the end-of-life and death of John Hawkins, a New York City resident, and his relationship with his friend and Zen Buddhist priest Robert Chodo Campbell.

Bright writes:

We could use news of a good death. Not a tragic death or a famous death, just a good one, the kind that might happen to any of us if we are lucky.

Spending time with these photos, there really is a sense of "lucky." Here is an intimate portrait of two friends spending quality, loving time together, one caring for the other, as death approaches. These photos aren't sad, even though John is dying: he is surrounded by people who want to care for him, and that care is based on love and intimacy and meaningful attention. And after John dies, Robert continues to offer him loving care, further illustrating the almost-beautiful experience these two friends shared.

via New York Times

Today Google announced a new program to help you control your Gmail and other Google accounts after you die. The program is called Inactive Account Manager, and allows you to have your data deleted or your accounts shared if those accounts become inactive for a certain amount of time.

From Google:

You can tell us what to do with your Gmail messages and data from several other Google services if your account becomes inactive for any reason. For example, you can choose to have your data deleted — after three, six, nine or 12 months of inactivity.

 

Right now, most online media companies (including social media, email and communication, photo and image sharing, etc.) are legally forbidden from disclosing content or granting account access to a third party without the consent of the owner—even if the owner has died, or left those accounts to someone in a will. We think Inactive Account Manager is a huge step forward in helping people manage digital accounts and digital afterlives. Thanks for getting onboard, Google.

via Google Public Policy Blog

For a blog series called A Matter of Life and Death, I admit that I’ve probably talked a lot more about the latter. (Sorry.)

“Can she keep this up?” you might be wondering. “This whole writing-about-death-all-the-time thing?” And the answer is, yes—with the help of a sense of humor.

Humor is essential for coping when tragedy strikes. Humor has saved me from depression, it has comforted me during the darkest moments, and, most importantly, it makes me feel connected, instead of utterly alone and parentless.

Some people say laughter is cathartic; some people may say I have a slightly twisted sense of humor. Either way, joking around—about my hardships specifically—gives me a break from the pain. And I really believe that laughter alters brain chemistry. If nothing else, being able to laugh during my months of pain bolstered my confidence and made me believe I could get through it, that I would survive this tragedy. Although nothing good comes of a terminal diagnosis or the death of a loved one, a reprieve from pain can be found in the humor. And often you don’t have to look very hard to find it.

When I first moved to San Francisco after my mother died, I found myself at a party with a bunch of new friends. When someone learned I’d moved all the way from the east coast to California, he quipped, “That must have really sent your parents to their graves.” I erupted with laughter.

Or how about the meeting with my mother’s financial advisor shortly after her death, when I was told that, from a tax perspective, her portfolio had done well, but we didn’t have enough loses to offset the gains. My immediate response, through a chuckle, was, “Well, I can think of one pretty big loss this year!” I cracked myself up with that zinger.  

Laughing in these situations makes me feel better about the situation. But the best part is being able to share these jokes with friends and family, the people who get me and see the humor, too. Something about being able to laugh with each other—the feeling that we’re connected and in this together—makes simultaneous, instinctive, and possibly off-color laughter the absolute best medicine.

After my mother’s funeral we sat shiva. After the first night of shiva drew to a close, I pushed the furniture to the edge of the room, turned the speakers up, and my friends and I danced our pants off. My mother was no longer in pain, and I had survived her death and funeral. We honored her and celebrated her with a nontraditional shiva that turned into a legendary party. Years later I refer to it as Shivapalooza, and my family and I love texting shiva puns and jokes to each other. “Shiva me timbers!” when someone’s surprised. “You’re giving me the shivas!” when someone’s nervous. The list goes on.  

Humor is personal. Maybe you don’t find these things funny, and I respect that. But if there’s one piece of advice I have for those of you dealing with heartache, hardship or tragedy, it’s to find your own humor. Find it in anything. Laugh, and laugh with others. It’s important. And I believe it’ll help you get through anything. Especially when you have no other choice.