Caleb Wilde: How to Speak the Language of Grief

HOW TO SPEAK THE LANGUAGE OF GRIEF

By Caleb Wilde

You walk into a house full of fresh grief.  It’s fresh because the death just occurred.  Your best friend’s husband went out to the bar last night, drowned his hard day in hard drink and he never made it back home.  Fresh.  Because both you and your friend have never experienced death this close.

You open the door like you have so many times before, but this time the familiarity of the house is unexpected different, dark and lonely.  What once housed parties, life and love now houses something you’ve never known before.  Like a river, everything is in the same place it was when you last saw it, but this home has changed.

You see your friend’s children sitting on the sofa, staring into space.

You ask them, “Where’s your mom?”

And as you reach to hug them, they snap back to reality and whisper, “Upstairs.”

Each step brings you closer to what you know is only an apparition of your friend.  The nerves build.  Fear begins to build.  You repress it as you ready yourself to meet your closest friend who has all of a sudden become someone you may no longer know.

“Can I come in?” you ask.  No response.

You push open the cracked bedroom door and see the body of your friend collapsed on her bed, with used tissues surrounding her like a moat.

You tip-toe into the room, slowly sit down on the bed, and not sure if she’s awake or asleep, you reach for your friends shoulder and begin rubbing her back.  Her blood shot eyes open, look at you and then, they slowly look through you.

You fill the weird silence with an “It’s going to be alright”.

“It’s not”, she whispers.  “I’m alone with two kids and no job.”  Her voice suddenly raises as anger courses through her body, “Why the f*** would he do this to me?”

The curse word chides you into recognizing that you’ve not only misspoken, but you’ve spoken too soon, so you decide to wait in silence.  She starts to cry.  You respond to her tears with your own.  Even though you want to respond with words, you know this isn’t the time for words.  There’s no perfection words here.  There’s no perfect anything here.  And so you wait.

You stay.  Listen.  Silence.  You take her pain into your soul.  Hours pass.  She rises out of bed and makes the children dinner.

You’ve spoken, not with words or advice; not by trying to solve the problem; nor by placing a limit on your time.  You’ve taken the uncomfortable silence, allow the grace for tears, for brokenness; you’ve allowed yourself to sit in the unrest without trying to fix it.

With your presence.  With your love.  In your honest acknowledgement of real loss, you’ve spoken the language of grief.

Although the language of grief is usually spoken in love, presence and time, sometimes it’s spoken in words.  And when it is, here are five practical “do”s and “don’ts”

The “DON’T”S:

1.       At least she lived a long life, many people die young

2.       He is in a better place

3.       She brought this on herself

4.       There is a reason for everything

5.       Aren’t you over him yet, he has been dead for awhile now

The “DO”S:

1.       I am so sorry for your loss.

2.       I wish I had the right words, just know I care.

3.       I don’t know how you feel, but I am here to help in anyway I can.

4.       You and your loved one will be in my thoughts and prayers.

5.       My favorite memory of your loved one is…

Caleb Wilde has many well written and insightful articles about death and dying... go to his website "Confessions of a Funeral Director" for more http://www.calebwilde.com/

Taken from 
http://www.leannepenny.com/2012/03/12/how-to-speak-the-language-of-grief/

Preparing the Final Tax Return

Preparing the Final Tax Return

Who is responsible for filing the deceased’s final tax return?

The deceased’s legal representative is responsible for ensuring that the tax return is filed. The legal representative would be the Executor (as named in the will) or the Administrator as appointed by the court. As the legal representative, you may wish to appoint an authorized representative to deal with the Canada Revenue Agency for tax matters on your behalf. You may do so by completing Form T1013, T1013.

What is the deadline for filing the final return?

If death occurred between January 1, 2011 and October 31, 2011, the final return is due by April 30, 2012. If death occurred between November 1, 2011 and December 31, 2011, the final return is due 6 months after the date of death. The due date for filing the T1 return of a surviving spouse or common-law partner who was living with the deceased is the same as the due date for filing the deceased’s final return. However, any balance owing on the surviving spouse’s or common-law partner’s return still has to be paid on or before April 30, 2012 to avoid interest charges.

If the deceased or the deceased’s spouse (or common law partner) was carrying on a business, in 2011 the deadlines are extended as follows. If death occurred between January 1, 2011 and October 31, 2011, the final return is due by June 15, 2012 though any taxes owing are due by April 30, 2012. If death occurred between November 1, 2011 and December 15, 2011, the final return is due June 15, 2012 and any taxes owing are due 6 months after the date of death. If death occurred between December 16, 2011 and December 31, 2011, the final tax return and any taxes owing are due 6 months after the date of death. The due date for filing the T1 return of a surviving spouse or common-law partner who was living with the deceased is the same as the due date for filing the deceased’s final return. However, any balance owing on the surviving spouse’s or common-law partner’s return still has to be paid on or before April 30, 2012 to avoid interest charges.

If a person dies after December 31, 2011 but on or before April 30, 2012, and that person had not yet filed the 2011 tax return, the due date for filing it, as well as for paying the balance owing, is six months after the date of death. The due date for filing the 2011T1 return of a surviving spouse (or common law partner) who was living with the deceased is the same as the due date for filing the deceased’s prior year return. However, any balance owing on the surviving spouse’s or common law partner’s return still has to be paid on or before April 30, 2011 to avoid interest charges.

How do you notify the CRA that someone has died?

You should provide the CRA with the deceased’s date of death as soon as possible. You can call them at 1-800-959-8281, or complete the form “Request for the Canada Revenue Agency to update records” found at T4011. Send the completed form to your tax services office or tax center.

CRA has a 33 page guide titled T4011 – Preparing Returns for Deceased Persons 2011. It can be found online at DP 2011.

More information to come…

I’ll have more tax information posted soon, so please revisit Widowed.ca soon. We’re here to help you take control of the future and move to the next chapter of your life. Should you have questions you’d like to see addressed in a future blog, please e-mail me at: jennifer@widowed.ca.

For more information you can contact Dedicated Financial Solutions. Or use our Looking for Help? search tool on the right sidebar and our Home Page to find additional experts in your area.

Excerpts from    http://widowed.ca/preparing-the-final-tax-return/

How 1 Billion People Are Coping With Death and Facebook

How 1 Billion People Are Coping 

With Death and Facebook

What's this?

“I think I’m going to go online,” said Cheryl, logging in to Facebook from her hospital bed.

She soon reconsidered, however. “I don’t know what to write: ‘Hey I almost died last night. What’s up with you guys?’”

Months later, Cheryl died from Hodgkin’s lymphoma. Her partner Kelli Dunham still cherishes funny memories like this one. “She was kind of a smart ass,” Dunham tells Mashable.

The two represent a phenomenon occurring the world over: Facebook after death. Couples, families, colleagues and friends are not only coping with losing loved ones, but also interacting with the Facebook profiles they leave behind.

The situation surfaces a multitude of questions and concerns. What happens to a Facebook profile after death? How do people interact with a dead user? Should loved ones be able to access a dead user’s profile at all? What is acceptable online grieving etiquette? And finally, what has grief become in the age of social media?

As of 2012, 30 million people who maintained Facebook accounts have died, according to a report by The Huffington Post. Some studies approximate that nearly 3 million users have died in 2012 alone; 580,000 in the U.S.

What Happens After We Die?

 

So what happens to all those suddenly abandoned profiles? Their fate could go one of four ways:

• The profile remains untouched, unaccessed, unreported and therefore open to everyday wall posts, photo tags, status mentions and Facebook ads. In other words, business as usual.

 

• A family member or close friend may choose to report a death to Facebook. Upon receipt of proof of death, such as a death certificate or local obituary, Facebook will switch the dead user’s timeline to a “memorial page.”

 

•  A close family member may petition Facebook to deactivate a dead user’s account.

 

 

• Users may gain access to a dead user’s profile in one of two ways: either through knowledge of the dead user’s password, a practice against Facebook’s terms of service, or through a court subpoena. However, per Facebook’s privacy policy and strict state law, courts rarely grant outside access to said social data. More on that later.

 

 

• Facebook’s official policy for handling user deaths is the memorial page. In 2009, the social network began switching dead users’ profiles to memorial statuses, should the deceased user’s friends or family request the change.

 

• Those friends may interact with the memorial page similarly as they would an active profile. They can post condolences and share memories on his or her timeline; they can view pictures and interact with past posts.

However, Facebook removes a host of other capabilities from memorialized pages. For instance, the profile is no longer accessible via public search, available only to existing Facebook friends. The page will not appear within Facebook “Suggestions.” In other words, the algorithm won’t suggest that you “reconnect with” a dead user whose page has been memorialized. Users won’t be able to tag a memorialized Facebook user in future posts or photos, or message that person at all. All automated app activity (e.g., Daily Horoscope) associated with a memorialized Facebook page ceases. Finally, Facebook reserves the right to delete status updates of a sensitive nature. For instance, if a user who committed suicide posted a photo of a gun to his head, Facebook would likely deem the content inappropriate and remove.

“Memorialization allows friends and family to post remembrances and honor a deceased user’s memory, while protecting the account and respecting the privacy of the deceased,” Facebook spokesman Andrew Noyes tells Mashable. “Also, we do honor requests from close family members to deactivate the account, which removes the profile and associated information from the site.”

Interfacing With the Dead

 But most users don’t raise a Facebook flag at all, choosing instead to peruse and interact with a person’s regular Facebook presence even after his or her demise. And they have all kinds of reasons to keep it that way.

Scott Millin lost his 45-year-old sister Nanci to breast cancer in December 2011. As her caregiver and estate trustee, Millin made practical arrangements before, during and after her death.

“My job was now to dismantle and disperse what was remaining from Nanci’s life,” says Millin. “Canceling her phone service, credit cards, trash service and email account were logical conclusions and decisions… The one thing I struggled what to do with [was] her Facebook page.”

He not only saw Nanci’s timeline as a testament to her accomplishments and memories, but as a curated tome of experiences she had chosen to share from her otherwise private life.

“I think Nanci’s Facebook page is a virtual cemetery of sorts for me, as well as for her friends and family,” he says. “Only we don’t have to navigate winding roads and marble headstones to get there. Instead, we just click from any device and see her, remember her, leave messages, and smile or cry at what was and what has become.”

For many, Facebook has become a highly accessible (even mobile) vehicle for grieving and, ultimately, catharsis.

For many, Facebook has become a highly accessible (even mobile) vehicle for grieving and, ultimately, catharsis.

Kristen Brown met well-respected musician Damien “Khamelien” Rahim through mutual friend Chris Kirkpatrick. Over the years, Brown and Rahim became close; the latter even wrote and produced the theme song for her nine-year-old son’s YouTube storyboard (below).

In September 2012, however, Rahim was robbed and murdered in an Orlando, Fla. parking lot. Since his Facebook was not memorialized, Rahim’s friends still received notifications from his Facebook events many days after his death.

After two months had passed, Brown showed a friend the storyboard, bursting into tears upon hearing Brown’s voice. She had to leave the room to compose herself. “That night I messaged Damien’s still active profile on Facebook,” she says. “It gave me comfort to be able to say what I needed to, even though he would never know.”

“Facebook very much helped in my time of grieving by making it so easy to connect with Damien’s family and other friends,” says Brown. “We bonded and shared our grief… It helped my kids grieve, as well.”

For others, reminders on social media of a loved one’s death can be more painful than helpful. If a dead user’s timeline sits un-memorialized, that profile can appear in Facebook Suggestions, such as the “People You May Know” sidebar on the homepage. Their birthdays reappear year after year in the news feed sidebar, prompting well-wishes from individuals unaware of the death. Many profiles continue to surface in Sponsored Stories, which promote users’ activity and likes from months and years past (e.g., “Kevin likes Wal-Mart”).

On the birthday following Cheryl’s death, Dunham noticed a flood of wishes on her partner’s timeline. But rather than scrolling through a stream of condolences, Dunham encountered what she initially interpreted as insensitivity.

“[People] wrote birthday wishes that made it clear that they had no idea she was dead. Stupid stuff like ‘Have a good time on your birthday, Cheryl. You only live once.’ Really,” she says. “I started responding to all these posts with just, ‘She’s dead,’ but since Cheryl had over a thousand Facebook friends, this was not really a very good use of time. I also probably hurt some people’s feelings.”

Excerpt from 

http://www.cuhea.com/2013/02/15/how-1-billion-people-are-coping-with-death-and-facebook/

Learning to Grieve on Social Media

Learning to Grieve on Social Media

Source: Mashable.com

Whether publicly or via intimate messages, people’s Facebook interactions with the dead mimic the grieving rituals we’ve held throughout time.

In Mexico, families honor their departed ancestors by leaving marigolds, baked goods and favorite possessions of the dead on altars. Similar to this Dia de los Muertos, Facebook users share cherished memories and stories, post favorite photos, inside jokes and “gifts” on their late loved ones’ Facebook timelines.

“People have built cemeteries and monuments in remembrance for as long as we’ve existed. Now those memories are digital,” says Margaret Carpo. Her friend died in a car accident in the Philippines in 2009, but her family continues to keep her Facebook Timeline active.

Western society especially presumes that individuals can overcome grief by emotionally detaching themselves from the deceased, says cyberanthropology expert Michaelanne Dye. “However, in the past 20 years, researchers have begun to explore the healthy benefits of maintaining a tie to the deceased… Considering this, Facebook appears to be a natural way for people to work through grief over the loss of a loved one.”

Dye also points to an evolving practice of identity construction, which makes dealing with grief in the Facebook era all that more nuanced. Today, identities are co-constructed through social media interactions. “Therefore, the deceased’s online identity not only continues in the virtual space; it can also evolve and adapt as others continue to interact with the dead person’s profile,” says Dye.

Some of those interactions, however, infuriated Dunham as she returned to interact with her dead partner’s Facebook profile. She diagnosed some of Cheryl’s Facebook friends with what she calls “social necrophilia,” the eager scramble to prove one maintained a close connection with the deceased.

“Everyone always wants to pretend they knew the dead person better than they do,” says Dunham. “For example, one person wrote, ‘You’re drinking champagne in heaven with my grandfather right now.’ This was ludicrous: Cheryl was a staunch atheist and she had 10 years sober, which was something she wrote about a lot.”

Andrew Ross lost his wife Debra to cancer two years and eight months ago. He feels that Debra’s Facebook friends seem detached from sincere grief.

“Most Facebook friends are pretty shallow,” he says. “There is not the depth of true emotions such as one would get in a real relationship. A lot of people respond in an overly emotional manner that seems to play on showing others how deeply they feel, whether it is true or not. It mostly strikes me as false and unpleasant. I got no comfort from the experience.”

Ross has mixed feelings about maintaining Debra’s Facebook profile and permanently deleting her presence there altogether. “At some point I feel her page should be deleted permanently. She is gone and it should be too,” he says.

Social media etiquette surrounding death is a delicate and highly subjective construct. What one person views as good judgment could translate as incredibly poor taste or downright offensive to others.

Julie Spira authored The Rules of Netiquette: How to Mind Your Digital Manners, wherein she talks about how to approach the “social media obituary.” In an email interview with Mashable, she praises people who honor the dead by celebrating that person’s memories and accomplishments on Facebook. However, she has also encountered instances she believes exemplify shockingly poor taste: “When a woman posted a photo of her newly deceased husband just prior to the ambulance arriving to take him to the morgue. It was grotesque and made many people uncomfortable.”

By this point, many people have learned that their friends and family have very different ideas of what constitutes “normal” grieving — especially when someone takes his or her grief public on social networks.

For many, grieving through social media is more comfortable than real-life interactions, which is why some people encounter what they translate as odd or callous behavior from fellow users. Dye adds, “Facebook provides a way for people to grieve publicly and receive feedback and support from others, while not forcing them to endure these painful interactions face-to-face, which, for some, might be an easier and healthier way for them to work through their grief.

“In the physical world, methods of mourning vary across cultures, as well as among individuals within the same culture. This also holds true in the online world.”

Grief therapist Lisa Leonard adds that grief varies wildly for each individual, and that it usually doesn’t progress orderly, like steps in a staircase. That being said, she can clearly identify the stages of grief (denial, anger, bargaining, depression and acceptance) in her friends’ Facebook behavior.

But Leonard believes that social media can actually ease the process for some. “Being able to access the lost one’s profile after death is beneficial,” she says. “It allows a connection to others who loved him or her, a source of memories and humor to share and an opportunity to say ‘goodbye’ or ‘I’m missing you’ in a way that can soften the blow and move the healing along.”

Sharing from Connecting Directors.com

http://connectingdirectors.com/articles/38770-learning-to-grieve-on-social-media?utm_source=dlvr.it&utm_medium=twitter

What a ‘Whopper’ of a Funeral 

Posted by CDFuneralNews on Friday, February 8, 2013

Article from: NYdailynews.com

http://www.youtube.com/watch?feature=player_embedded&v=goBWhWTmnko

ASON PLOTKIN/AP

The hearse carrying David Kime, Jr. pulls up to the drive-through at the Burger King in York.

Kime got one last burger too, the York Daily Record reported. It was placed atop his flag-draped coffin at the cemetery.

Phiel said the display wasn’t a joke, rather a happy way of honoring her father and the things that brought him joy.

“He lived a wonderful life and on his own terms,” she said.

JASON PLOTKIN/AP

Margaret Hess, the manager at Burger King in York, Pa. passes out a Whopper Jr. sandwich to a mourner of David Kime, Jr. before his funeral on Saturday.

Kime, 88, a World War II veteran, died Jan. 20.

Restaurant manager Margaret Hess said she knew his face and his order. She and her crew made 40 burgers for the funeral procession.

“It’s nice to know he was a loyal customer up until the end — the very end,” she said.

Video from: CNN

THANK YOU TO CONNECTING DIRECTORS FOR FEATURING THIS INTERESTING STORY...

About the author

CDFuneralNews  ConnectingDirectors.com is the premier progressive online publication for funeral professionals. 

Caleb Wilde -- Coping with Death

I Am the Creator of the Good

By Caleb Wilde

"...When we think about the inevitable, how do we lift our heads?  How do we not just close our eyes and ask for the mercy of eternal sleep?

You will die...I will die...

Maybe painful.   Maybe today, robbing me of watching my son grow.  Or maybe I die old, the last of my family, alone.  Or, maybe I will see my son die, unable to stop an inevitability that is stronger than I.

And yet, I’m reminded, as I sit paralyzed that although from dirt I was made, I am no longer.

“Stand up, child of God, so I can speak to you.  Stand up.  You were made in my image, you will create.  You will create what is good.  Stand up, so I can speak to you.”

So I stand.  I will not be paralyzed by what I cannot change, I will learn to smile.  I will be vulnerable.  I will stop and look at the stars, the flowers, the beauty of the snow, the fading transience of a passing sunset.  I will always have time to talk to you, to stop and help you and to be your friend.  Each day will be my masterpiece; each day, as I lay down my head to rest, I will see that it was good.

I will be the creator of the good.  I will be like God.  I will speak it into existence."

               

About the author

Caleb Wilde        

I'm a sixth generation funeral director. I have a grad degree in Missional Theology. And I like to read and write. Connect with my writing and book plans by "liking" me on facebook. And keep tabs with my blog via subscription or twitter.

Confessions of a Funeral Director  http://www.calebwilde.com/

Excerpts from an article taken from:

http://connectingdirectors.com/articles/38632-i-am-the-creator-of-the-good-caleb-wilde

Grief Is Like Cutting Yourself Shaving

Grief Is Like Cutting Yourself Shaving

Guest article from: Lauren Polanski

If you end up going to Mortuary School, you’re going to end up learning about Elisabeth Kübler-Ross. She’s like the ‘Go-To’ gal when it comes to grief. I remember spending nights studying with my classmates trying to learn her Five Stages of Grief. DABDA. Denial, anger, bargaining, depression and acceptance.  After awhile it started to sound like a Flintstones episode in our dorm rooms with us yelling, “DABDA, DABDA, DOOOO!” (Kidding, kidding…we tried not to yell…) And I mean, sure her theory works. In theory. But (in my opinion) her guidelines are a little outdated. Let me tell you what grief if like from the perspective of a twenty-two year old, new to the business, funeral director.

Grief is like cutting yourself shaving.

I’m serious.

Okay, let me explain.

About two months ago I was taking a nice bubble bath. As I put down my book I took a look at my legs in the tub. They needed a good haircut. So I grab the shaving cream and my razor. As I lathered up my legs my mind started to wander. It does that a lot. And maybe I wasn’t paying much attention. Or maybe my razor was too dull. But I cut myself. Bad.

When I say bad you may not just understand how bad. So let me paint you a picture so you know how I felt. On my right leg right above my ankle I basically skinned off two good inches of flesh. Seriously. You know when you’re cooking mashed potatoes and right before you put them into the boiling-hot pot you skin them? Well, potato = Lauren’s leg. I had to pull my skin out of my razor because it clogged it. THAT’S how bad.

My initial reaction to said cut? A blood piercing scream. You can imagine that a cut will hurt, but you never know just how deep the pain goes until you experience it firsthand. Someone can come up to me and go, “Lauren, I’ve cut myself shaving before, I know how you feel.” And maybe they have cut themselves and they do know. But the pain that I felt, it was all my own. Only I know how bad it really hurt me. So what did I do after I cut myself? I took a nearby washcloth and I wrapped it around my leg. Tried to take my mind off of the situation. Hey, a girl has to finish her bath after all.

When I did finish I got out and put two band-aids on the wound. That’s right, one just wouldn’t cut it for me. And I went about my day. And the cut affected me. Because no matter how much I tried to ignore it, the pain was still present. Every time I took a step forward I was reminded about my cut. The next day I took off the band-aids to clean it and to my surprise the cut looked just as fresh as ever. I mean, it was still bleeding! So I washed it, and put on two fresh band-aids.  As the week went on I had good days and bad days. I couldn’t wear certain shoes because they brought out the pain in my leg. If I hit my leg against anything I would again be reminded by pain rushing back to the section of my leg where I had no skin. And when (a couple of months later) the cut did heal I was reminded about it again because of the scar that it left behind.

Are you still with me? Or did you have to excuse yourself because my descriptions were too much for you? Let’s recap.

When you’re grieving, people may have gone through similar situations, but only you know how it made you feel. Pain and hurt are difficult to explain. What may feel like a large burden to one person may not be the same for another. 

Remember your grief is your own.

You may not think that your grief is that bad and you may try to just wrap a washcloth around it and go on with your normal routine. For some people, staying busy helps them. For others, they’ll need to stop and really focus on their grief at hand.

Sometimes, the ‘normal’ amount of time/help/crying just doesn’t cut it with grief. Don’t be afraid to put two band-aids on even though others only used one.

Your grief may still ‘be bleeding’ the next day. When things are fresh it may take some time to get over it. Don’t let this scare you.  You’ll have good days and bad days. There will be things that remind you of your grief. There will be situations that make the grief sting like it’s fresh. It’s all okay.

And lastly, there will be a scar. There is a void in your life where something or someone once was. But you can make the scar beautiful. It doesn’t have to be a painful reminder. It can be a reminder of all the good times and memories that are still in your heart.

So there you have it. Grief, explained by Lauren. I hope that Elisabeth Kübler-Ross can help you if you’re going through a difficult time. She was a pretty awesome lady after all. And if you find that you’re all DABDA’d out, maybe you’ll look at your razor, think of me and my story and smile.

About the author, Lauren Polanski

Lauren is just like any other twenty-two year old girl besides for the small fact that she’s a licensed funeral director in New York State. Lauren is currently employed at the Lakeside Memorial Funeral Home, Inc. located in Hamburg, NY. When not working she enjoys reading, taking photographs and of course, writing about the funeral industry as seen through her eyes.  www.littlemissfuneral.wordpress.com

A Dying Person’s Guide To Dying

A Dying Person’s Guide To Dying

by Roger C. Bone, M.D.

By thinking ahead about what could happen - and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. 

What I have to say is for the person who, like myself, is dying. We, too, need to plan - to think ahead in order to fashion, out of the time remaining, the best of what is possible.

As I am dying from cancer, I have learned some things that I think are important for a dying person to know in order to plan. I am a physician, but what I have learned has little to do with my medical training. I have learned this as a person; perhaps my medical experience was helpful because I have paid close attention to the actions and reactions of people around me.

First, it is likely that you will be surrounded by persons who mean well but, in the end, you must die your own death. Dying can be considered a journey one takes alone with a crowd. Family and friends are the first to gather around you, and they offer the most comfort.

Here are some pieces of advice to remember in those first few days after you learn the bad news.

One or two people - probably family members - will make enormous personal sacrifices to help you. If you are married, your spouse is likely to do this, but don’t be surprised if others - a daughter, a brother-in-law, or even a friend, step forward to offer extraordinary help. Be grateful, and accept help, from whatever source, graciously.

Some family members, but especially friends, will treat you differently. Even before you show signs of serious illness, people will have a different look in their eyes as they talk with you. You might consider this patronizing or over bearing. It may be difficult, but it is best to ignore their attitudes and treat them as you always have. They will come around to their normal selves when they get over the shock.

 

Happily accept all gifts from family and friends. It makes them feel better and you might receive something you really like and appreciate.

Don’t be afraid to ask to be alone. We need time to be by ourselves. Some family and friends may feel driven to fill your every waking moment with activities; perhaps they are trying to “take your mind off” your impending death, but they may also be doing the same thing for themselves.

Be your own counsel. No one, including your physician, religious counselor, spouse, or friends can understand 100% what you want and need. It surprised me that some people seemed to “bully” me with advice when they learned that I was terminally ill. We should remember Immanuel Kant’s advice to avoid accepting someone else’s authority in place of our own powers of reason. We are the ones who should be considering alternatives and making choices. We can, and should, ask for advice. Make telephone calls and read books - but ultimately, we should decide.

Slow down and ask your family and friends to slow down. There may not be a lot of time, but there is sufficient time in all but the most extreme cases to think, plan, prepare.

There are things you need to know from your doctors and other health care staff. You need not ask all of the following questions or ask them in this order. Still, these questions deal with crucial issues that need to be addressed and, hopefully, resolved.

What is my disease?

You should find out as much as possible about your disease. What is it? How will it affect me? And very importantly, how will it cause my death? First, ask your physician. Additionally, many popular books are available in bookstores and libraries which can give you a basic sense of your disease process and disease terminology. National organizations, such as the American Cancer Society, and often local hospitals can provide brochures, video tapes, or even lay experts to help you and your family understand your particular disease. Ignorance is not bliss; the more you and your family know, the better able everyone will be able to cope with what is happening.

Should I seek a second opinion 

about my disease and my condition?

Seek a second opinion! A second opinion will relieve your mind and resolve doubts one way or another that a major mistake has not been made. More importantly, a second opinion will offer a slightly different perspective that may help everyone’s understanding. Don’t be embarrassed about asking for a second opinion or think that you will make your physician angry. Second opinions are perfectly acceptable, and many physicians are happy when their patients seek second opinions. The original diagnosis is usually confirmed, and you are then more prepared to follow prescribed treatments.

What health professional do I especially trust?

Search for and then trust in a single individual. This does not mean you should not listen to all health professionals and follow reasonable directions and advice. But focus on one individual as the final helper. This normally will be the specialist physician in charge of your case. However, you may know your family doctor better than you know your cancer specialist. If this is the case, your family doctor may be the one to choose. But, if you do, make certain that your family doctor knows that he or she is serving that role.

Why am I going into the hospital?

There are four basic reasons why a terminally ill person would be hospitalized, but not all four necessarily apply to every patient. They are: (1) to confirm the diagnosis and analyze how far the disease has progressed; (2) to provide treatment that can only be given in the hospital, (3) to treat a severe worsening of the disease; and (4) to treat the final phases of the disease, if this cannot be done at home or with hospice. You should know which applies to you so that you can understand why things are done to you and what benefits you can expect.

What are the hospital rules about terminally ill patients?

Hospitals and medical centers have written rules and procedures that outline in detail how the hospital will deal with terminally ill patients. These are not “treatment” rules. These protocols or guidelines, as they are called, deal with how to handle end-of-life issues, such as whether the patient (or the patient’s family speaking for the patient) wishes extraordinary “heroic” measures to be used to keep the patient alive. Hospitals are obligated, and very willing, to share these protocols or guidelines with patients and families. 

Consider getting a durable power of attorney in which you name one or two people to make decisions or choices on your behalf if you should be incompetent or incapable of making decisions yourself. 

Read the “Do Not Resuscitate” policies of the hospital. Death should be peaceful, and you should not ask for anything that gives you prolonged agony.

You should be aware that nurses and other hospital staff may not know that you are terminally ill. This fact may not be written in your chart, which can lead to conflicts between families and hospital staff. The family may assume that everyone in the hospital shares their grief, and will not understand the workaday attitude of nurses, dietitians, or others. It is okay for the family to tell the hospital staff that you are dying since they may not know.

What resources are available from the health care community?

Most hospitals have many services available to patients and families to help with nonmedical aspects of your care. These include social services and psychological, financial, and religious counseling. For example, a visit, before hospitalization, to the hospital financial counselor by a family member to check on insurance and payment plans is a wise move. In the rush to admit a patient, important information may not get recorded. A 15 minute meeting with counselors can avoid stress and anger over incorrect bills. Similarly, meeting with the hospital social worker may be very helpful in arranging home care. Use these services!

What can I do if it seems that nothing is being done or if I don’t understand why certain things are done to me?

Hospitals, clinics, and doctors’ offices can be confusing places. You can begin to feel you have no control over what is being done to you, and you may wonder if anyone really understands your case. This is the time to call the health professional who is your primary contact - the one you decided you fully trust - your physician specialist or family physician. Ask this person to explain what is going on. Have him or her paged or even called at home if your situation is very upsetting. It is the physician’s responsibility to help you, and he or she will not be angry that you called.

How will I and my family pay for my treatment?

Financial professionals employed by hospitals understand billing and what may or may not be covered by Medicare, Medicaid, or private insurance. Consult them and be sure to ask every question to which you and your family need an answer. It is important that you and your family do not panic over billing. Ask for advice and help.

Sometimes the hardest part about dying is the effect it has on your family and friends. Helping them deal with your death helps you find peace and comfort. 

If you are not at peace with your death, ask the health professional you especially trust to help you find peace. That person will help or will get whatever help is needed. After all, it is the goal of all health professionals, to give you comfort and health during life and peace to you and your family at death.

Copyright © 1997 by the American College of Physicians. The American College of Physicians gives permission to reproduce and distribute copies of this plan provided it is not altered and its use is not for profit. Users can remove the left column (containing the book contents and the word “Top”) when making copies for distribution. For information on translation, subsidiary, and for-profit use, contact David Myers. Phone: 215-351-2642; fax: 215-351-2644; e-mail: dmyers@mail.acponline.org.