If you've even been on the receiving end of a terminal diagnosis or watched someone struggle with a serious illness, then you know about the identity crisis that strikes when someone becomes sick. Like patients, caregivers too must cope with forces that put pressure on their identities.

A serious diagnosis ushers in a tidal wave of new responsibilities, limitations, and priorities for a patient as well as a patient's caregiver. Caregivers are forced to bend and adapt in unfamiliar ways—ways that often force them to change their very natures.

I'll never forget the day when the figurative baton of power and decision-making passed from my mother to me. She was hospitalized at Georgetown University Medical Center due to a chemo-induced infection. Up to that point, my mother still made final decisions for our single-parent household. She was my mother, and that was her job. As her daughter, it was my responsibility to listen and do what she said.

Friends and family called and wanted to visit us in the hospital, but my mother rejected all overtures. She didn't want anyone to see her dressed as a patient in a hospital bed, hairless and pale. So we sat there—day in and day out, in what I'm convinced is the most depressing room in the entire world—preserving her dignity.

But I ached to let people in. As if having my mother in the hospital wasn't bad enough, the feelings of utter isolation and loneliness were enough to threaten my resolve. They were enough to break me. After several days, I couldn't take it anymore. I decided then and there that I wouldn't allow my mother to push people away when things were at their worst anymore.

"We have to let our friends in," I said to her, tears streaming down my face. "It's too much for just us. It's too much for me if it's just us."

And that was the first day of my reign as Executive Decision-Maker. It officially marked the start of my role as caregiver blurring with my role as daughter. In some ways, I assumed the role of parent, not because it felt right or was comfortable in any way, but because I had no other choice.

I made many important decisions after that, some my mother didn't agree with and most she didn't even know about at all. I decided when to call her doctors or 911, when to prioritize pain relief over chemo treatment, when to hire a full-time nurse, and when to let hospice enter our home.

I was 27 years old when I became my mother's caregiver. My old roles as daughter and child were suddenly gone and replaced by new ones—nurse, financial manager, and decision-maker. I felt overburdened and under-qualified. But when you're pushed into the deep end and panic washes over you, you quickly learn how to get your head above water, even if your stroke is more gawky than graceful, because sinking just isn't an option.

My mother died in January of 2010, and I am no longer a caregiver. In fact, I have reclaimed my role as daughter. Even though my mother is no longer around, I'm still her daughter. And when I wish she were here to advise or support me, I think back to a time before our roles reversed, to a time when she was my caregiver. I know her well enough to guess how she might advise me today.

So again, I'm listening and letting her weigh in, preserving the roles that make us both who we are, inherently and to each other, even though she is not physically present. And I can't think of a better way to preserve her dignity—the dignity that she fought so hard to keep during her final months.

In addition to writing about my experiences on the Everplans blog, I'm also sharing my story over at The Huffington Post. Please check it out!

Twice in one week! Everplans got another awesome press mention this week from GigaOM.com.

Everplans is named as "one of a handful of relatively new startups trying to use technology to help patients think through and share their end of life decisions...[with a] focus on medical planning services, along with a wider range of financial and legacy planning options."

To check out all the great press we've received, head over to our Media Center.

Everplans has been featured on SpryLiving.com, in a piece exploring the importance of planning ahead for your family.

The piece specifically focuses on the necessity for planning for those in the so-called "Sandwich Generation": people who are at once caring for aging parents and young or teenaged children.

From the piece:

Proper planning can make you the hero to your spouse, children, and even your parents. Not only does planning provide you and your loved ones with peace of mind, but a recent study from the Personality and Social Psychology Review showed that it may also actually give you a mental health boost.

Abby Schneiderman and Adam Seifer, co-founders of Everplans, are trying to change the way that people plan. Through their first-of-its-kind free website, Everplans.com, they are providing people with comprehensive information and tools so they can make informed decisions for themselves and their families, around life planning, end-of-life planning, even dealing with death.

via SpryLiving.com

Today, I'm proud to be guest blogging over at Caleb Wilde's blog Confessions of a Funeral Director. My piece is called "5 Tips for Creating a Personal Sendoff," and it's about...well, it's 5 tips for how to make a funeral truly unique and special.

Here's a little preview:

When I tell people that I work in the funeral industry, most become speechless. Looking at me questioningly, they’ll mange to ask, “But…why?” I tell them about the funeral I planned for my father 6 years ago. It was the most emotionally challenging thing I’ve ever done, but it was also the most rewarding. I understand the power that a meaningful funeral or memorial service has in the emotional processing, grieving, and healing after a death. And so I use what I learned from my own experience to guide and empower others to create meaningful sendoffs for their loved ones. I deeply understand the power that a meaningful funeral or memorial service has in the emotional processing, grieving, and healing after a death. I hope that by helping people create personalized services I am alleviating some pain for these families.

Obviously, I can’t tell you what specifically will be meaningful to you or loved ones. I can, however, share the lessons I learned from planning my dad’s funeral and the dozens of special funeral and memorial services I’ve helped other families plan. So without further ado, here are my top 5 things to consider when creating a personalized sendoff.

For the rest of the post, and all 5 of my tips, please head over to Confessions of a Funeral Director and check it out!

Burial or cremation? For centuries, these have been the only two options for what to do with your body when you die. But now these options are starting to change, and expand. Gizmodo recently highlighted 8 Designs that Rethink the Way We’re Buried, looking at how innovative thinkers are changing burial methods. 

This article was inspired by Designboom’s “Design for Death” competition. Designboom pushed innovators to inspire and change the way our culture looks at traditional methods of interment—namely, burial and cremation. Rather than just put ashes into a plain urn, these artists came up with inventive ideas such as shooting them up in a weather balloon or transforming them into a wind chime.

One of the featured innovators is M.I.T. research fellow Jae Rhim Lee. She has invented the Mushroom Death Suit in an attempt to filter out the hundreds of chemicals that every person has in his or her body that seep into the earth when a body decomposes. The Suit is a cotton bodysuit covered in mushroom spores stitched in an arrangement replicating mushrooms’ natural growing pattern. The idea is that when a person dies, her body can be covered in "a ‘cocktail’ of elements which facilitate decomposition and toxin remediation," placed into the suit, and placed in a natural environment to become a patch of mushrooms—and ultimately healthy, chemical-free compost.

Lee says:

“Imagine the Infinity Mushroom as a new way of thinking about death and the relationship between the body and the environment…steps towards accepting the fact that someday I will die and decay…a step toward taking the responsibility towards my own burden on the planet.”

What’s most impressive to me about the Mushroom Death Suit (and all the other competition entries) is number of people who competed, and what their efforts symbolize. The competitors weren’t funeral industry professionals—they’re artists and designers, people who think about the way we live. And they’re pushing for society to accept that it’s time break away from the status quo when it comes to death, and questioning not only how we live, but also how we die. This competition, and the incredible ideas and prototypes it inspired, is a step towards exposing society to more options when it comes to our futures.

via Gizmodo

What happens to your Gmail when you die? What happens to all the photos you've shared on Facebook? Who gets your text messages? And who can access your online accounts?

The more of our lives we spend online, the more digital property we collect, and the more complicated settling our estates will be in the future. And so we need to create digital estate plans for three main reasons:

  1. To communicate our wishes, and let our families know what we want done with our digital assets when we're gone
  2. To help our families, so that they can quickly and easily access our important digital assets when the time comes
  3. To preserve our digital legacy, and make sure that the treasured memories and personal imprints that we leave online can be saved

Everplans now has a suite of articles and tools to help you get started creating your digital estate plan:

We hope that these new articles will help you as you begin to think about digital estate planning and actually create a plan for yourself and your family. If you have any feedback, we'd love to hear from you in the comments below.

Today, the US Supreme Court ruled that the Defense of Marriage Act (DOMA), signed into law by President Clinton in 1996, is unconstitutional. At the core of the case was the issue of whether DOMA violates equal protection rights that are guaranteed in the Fifth Amendment's "due process" clause, and whether the federal government can deny Social Security, tax, health care, pension, and veterans' benefits (among others) to same-sex couples in states where they can legally be married.

And what was the impetus for the case? Estate taxes. According to CNN:

The key plaintiff is Edith "Edie" Windsor, 84, who married fellow New York resident Thea Spyer in Canada in 2007, about 40 years into their relationship. By the time Spyer died in 2009, New York courts recognized same-sex marriages performed in other countries. But the federal government didn't recognize Windsor's same-sex marriage, and she was forced to assume an estate tax bill much larger than those that other married couples would have to pay. So, Windsor sued the federal government.

So what does all this mean going forward? According to Deborah Jacobs at Forbes.com, for one thing, same-sex couples will now be able to take advantage of the "unlimited marital deduction" that heterosexual couples have, which allows spouses to transfer money to each other, during life or in a will (after death), without having to pay any estate taxes or gift taxes on inheritance that exceeds the tax-free amount ($5.25 million over the course of a lifetime). Jacobs goes on to say:

In its decision, the Court gave examples of ways that “DOMA touches many aspects of married and family life, from the mundane to the profound,” creating financial burdens for same-sex couples by:

  • Preventing them from obtaining government healthcare benefits they would otherwise receive;
  • Depriving them of the Bankruptcy Code’s special protec­tions for domestic-support obligations;
  • Forcing them to follow a complicated procedure to file their state and federal taxes jointly;
  • Prohibiting them from being buried together in veterans’ cemeteries;
  • Raising the cost of health care for families by taxing health benefits provided by employers to their workers’ same-sex spouses;
  • Denying or reducing benefits allowed to families upon the loss of a spouse and parent.

This decision marks significant progress in the civil rights of same-sex couples in America. Still, we must be aware that this new ruling only applies to married same-sex couples in states that legally recognize same-sex marriage—currently only 12 states and Washington, D.C. For same-sex couples in any of the other 38 states, they still face the inequality that Edie Windsor fought against. There is still inequality and, from estate planning to health care rights, there will be significant struggles.

via CNN and Forbes.com

 

The New York Times has shared a short documentary called "The Caretaker" that looks at the loving, compassionate, and challenging relationship between a caretaker and the elderly woman she cares for. The caretaker is an undocumented Fijian immigrant; the woman she cares for is Japanese-American, and was held in a Japanese internment camp during WWII. This is an incredibly moving portrait of caregiving, love, humanity, friendship, and, ultimately, loss.

Speaking of her own death and the imminent death of the woman she cares for, the caretaker says,"It's just another transition you have to go through; you're going to another life. I'm not afraid anymore. In her own time, she will go."

via New York Times

Sometimes, you're just not able to make it to a funeral. Maybe you're out of town, or the funeral is too far away, or you can't afford to take off work. Whatever the reason, know that it's not the end of the world. Of course you want to be there to show your support, but there are lots of other, equally wonderful ways for you to show your friend that you care. Here are 5 things you can do to show your support if you can't attend the funeral.

We know that deciding what to wear to a funeral can be a challenge. To help you figure out what to wear to a funeral or memorial service we've written articles and made how-to videos. And now, we've got pictures.

The folks over at Connecting Directors searched the Instagram hashtag #funeralattire and have shared their findings. Take a look to find inspiration...

via Connecting Directors