Friday, July 31, 2015

There are Dozens of Books to Teach Children About Alzheimer's -- But Few Are Good Enough as Books or as Information

The authors of a study on children's books about memory loss in grandparents found that they missed key elements -- like reassuring children that dementia is not catching and portrayal of the progressive nature of the disease.  And most were not well-written enough to be of value.

Not only can books give children insight, she added, but also, “they can also guide parents with their discussions.”

Ms. Sakai and her co-authors were disappointed, however, by many of the 33 books they examined. “There are areas that are important to address that some books aren’t capturing,” she told me in an interview.

Like, for example? “The books did a generally good job of portraying the cognitive aspects — memory problems, poor judgment,” Ms. Sakai said. “But other elements were less well-represented.”

They include symptoms like wandering, agitation, sleep disturbances and depression. Only about a third of the books depicted anger or irritability, and very few showed functional limitations — the inability to drive, feed oneself, walk.

The researchers, arguing for more comprehensive portraits, noted that only a quarter of the books discussed the diagnostic process, and only 12 percent reassured kids that Alzheimer’s wasn’t catching and that they wouldn’t come down with it. Acknowledgments that people with the disease will get worse were rare, and references to incurability and eventual death even rarer.
Recommended by the author of the article: The Memory Box

Books to Teach Children About Alzheimer's - The New York Times

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The Glass Half Full - a remarkable woman decides to attend a hospice and...

The Guilt and Pride of the Reluctant Caregiver - The New York Times

"Let’s acknowledge that at times almost every caregiver knows exhaustion, anger and resentment.  But to me, reluctant caregivers probably deserve more credit than most. They are not getting any of the good stuff back, no warmth or laughter, little tenderness, sometimes not even gratitude.

Yet they are doing this tough work anyway, usually because no one else can or will. Maybe an early death or a divorce means that the person who would ordinarily have provided care can’t. Or maybe the reluctant caregiver is simply the one who can’t walk away.

 “It’s important to acknowledge that every relationship doesn’t come from ‘The Cosby Show,’” said Barbara Moscowitz when I called to ask her about reluctance. Ms. Moscowitz, a senior geriatric social worker at Massachusetts General Hospital, has heard many such tales from caregivers in her clinical practice and support groups.

“We need to allow people to be reluctant,” she said. “It means they're dutiful; they're responsible. Those are admirable qualities.”

Yet, she recognizes, “they feel oppressed by the platitudes....“Caregiving only goes one way – it gets harder, more complex,” she said. “Support groups and community resources are like having a first aid kit. It’s going to feel like even more of a burden, and you need to be armed.”

I wonder, too, if reluctant caregivers have a romanticized view of what the task is like for everyone else. Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally.

For a reluctant caregiver, “the satisfaction is, you haven’t turned your back,” Ms. Moscowitz said. “You can take pride in that.”"

The Reluctant Caregiver - The New York Times

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Thursday, July 30, 2015

My Wishes: An End Of Life Care Story

Diamonds to Dementia: Part 1 - Cynthia Kraack

 "Living with a person with vascular dementia is living in a difficult, unpredictable and stressful situation for an unknown amount of time. Some days might be good, other days will be bad. Weeks and months turn into years. Stress does its own damage when unrelieved. My sibling died first, then my mother, then my father. I try to be gentle in my memories and treasure the times we laughed together. We really did try our best to manage through difficult times. We made good decisions and bad. That’s another part of the story."

Diamonds to Dementia: Part 1 - Cynthia Kraack

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Wednesday, July 29, 2015

"Nothing Lasts" poem by Jane Hirshfield

Nothing Lasts

"Nothing lasts" --
how bitterly the thought attends each loss.

"Nothing lasts" --
a promise also of consolation.

Grief and hope
the skipping rope's two ends,
twin daughters of impatience.

One wears a dress of wool, the other cotton.

Jane Hirshfield

Wise Words on Grief -- "Do I love others as deeply as I grieve? I hope at least this much."

Today I’m wondering if the love we have for a spouse is equal to the grief we feel when they die. Osho says that sadness gives our lives depth, and that the deeper we experience grief, the more happiness we will have, like the branches of a tree symmetrically balancing the extensiveness of its roots. He might also be saying that because of grief, we appreciate more the good things that come to us on their own, and balance is restored. The roots of grief also keep us grounded when we are tempted to think that life is supposed to be completely happy.
Osho’s image is important for those who grieve, up to a point, because to fight back to this place of balance from unending despair is such a relief. It tells us that although our grief is great, so will be our happiness. At a time when we can't imagine ever being happy again, this gives us assurance that we will.
It’s a nice equation, but I'm tired of living proportionally. I want to be all in with life. I don't want to be balanced. I want more happiness than grief, at least 60/40, so that I have a fair chance each day to enjoy life. I don't want to be limited on the happy side of the equation because I haven't suffered enough.

F**k the tree! Okay? Grief broke me, and in being broken I learned how critical it is for those who grieve to have people around who are willing to listen and help as they can.

I need to take risks, and I want to get angry when people who are grieving are being neglected, ostracized, and abused. I want to laugh at inappropriate times if I feel like laughing, and dance when I feel like dancing.

I am going to survive grief not because I am balanced, or because I have hidden strengths that grief has brought out, but because I’m stubborn. If death is going to hit me, then I’m going to hit death back, and hard.

The Personal Paradigm Shift of the Past Perfect

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Michael Hebb: Let's have dinner and talk about death

The House of Life: The Choice, III

The House of Life: 73. The Choice, III
by Dante Gabriel Rossetti

Think thou and act; to-morrow thou shalt die
Outstretch'd in the sun's warmth upon the shore,
Thou say'st: "Man's measur'd path is all gone o'er:
Up all his years, steeply, with strain and sigh,
Man clomb until he touch'd the truth; and I,
Even I, am he whom it was destin'd for."
How should this be? Art thou then so much more
Than they who sow'd, that thou shouldst reap thereby?

Nay, come up hither. From this wave-wash'd mound
Unto the furthest flood-brim look with me;
Then reach on with thy thought till it be drown'd.
Miles and miles distant though the last line be,
And though thy soul sail leagues and leagues beyond,—
Still, leagues beyond those leagues, there is more sea.

Tuesday, July 28, 2015

How Your Words Can Complicate My Grief | griefministerdotcom

 "I know you mean well and that you want to help and support me in my grief.  I need you to quit trying to come up with answers to my questions.  I need you to talk less and listen more without judging or giving unsolicited advice.  I need you to let me know that you have heard me and are trying to understand me and my grief.  Quit trying to fix me and simply be there for me."  Larry M. Barber

How Your Words Can Complicate My Grief | griefministerdotcom

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An Open Letter to a Recently-Bereaved Mother | Headspace Perspective

From Leigh:

One day at a time.
Don’t expect too much of yourself.
Whatever is right for you, whenever is right for you.
Find people you can trust to confide in, or just to listen.
Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.
Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.
Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.
Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).
Being selfish when you need to be is acceptable – often life after loss is about personal survival.
There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.
Bad days can come from nowhere.
You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.
There is no ‘normal’, no better. Just different.

An Open Letter to a Recently-Bereaved Mother | Headspace Perspective

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Monday, July 27, 2015

The language of grief: Four books that will change how you read about loss -

Joseph Luzzi cites Didion in his new memoir, “In a Dark Wood: What Dante Taught Me About Grief, Healing, and the Mysteries of Love” (HarperWave, 2015). “I had left the house at eight thirty; by noon, I was a widower and a father,” he writes. While Luzzi was teaching a morning class at Bard College, his wife, Katherine, heavily pregnant with the couple’s first child, pulled out into traffic and caused a terrible accident. Shortly after an emergency C-section brought daughter Isabel into the world, Katherine died during brain surgery.

Luzzi joins three other writers whose new books encompass death and grief. Three are memoirs about the loss of someone close, while the fourth, Benjamin Johncock’s “The Last Pilot” (Picador, 2015), is a novel in which loss is ignored by its main character, which causes even more loss.

The language of grief: Four books that will change how you read about loss - by Lorraine Berry

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We need to talk about death - Telegraph

“Rather than trying to prolong his life with all that entailed, we chose maximum quality of life in a shorter time because that was right for our child...He had a stonkingly good party with all his friends. But mainly we just chilled out and kept things as normal as possible."

We need to talk about death - Telegraph

Sunday, July 26, 2015

The Future, Without Me - Modern Loss

"Everything is being done because I need my life and my life needs me. All the modern cancer fighting technology is waging war with my body and on it. I can handle the intense invasive medical procedures because this marathon is about endurance. The more treatment you can endure, the longer you live to endure more of it. Until you can’t.

The rage keeps me going. I am so angry at my body, which quietly allowed incurable tumors to invade my bones, my lungs, my brain. It came in stealth and only made itself known once it was far too late to catch my life and live it. I sat on the cold hospital table hearing the news. At that moment my life fell from my hands onto the floor by my feet. I couldn’t reach it or pick it up. I just sat beside it and watched it get smaller as it seemed to drain through cracks in the floor.

I don’t cry. If I do, I feel it might cause me to miss something I can’t get back. I hold my life fiercely because I can’t imagine leaving my two young children. They will have to navigate their lives based on what I have taught them and I know I won’t have taught them enough.

Sometimes my mind dips so fully into my outside life, I can actually forget I am dying. I participate in my life as best I can. I work full time, see friends, drive my kids to their sports. I smile and laugh and make it all look so light and breezy that my children can’t see my rot. They know it is there, like a swampy creature, black and smelling of death in the corner of the room. They don’t speak of it, and neither do I.

It sits inside me though."

The Future, Without Me - Modern Loss

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A Short Video, a Big End-of-Life Difference -- Science of Us

"A team of 16 researchers led by Dr. Areej El-Jawahri of Mass General Hospital and Harvard Medical School, a member of a group calling itself the Video Images of Disease for Ethical Outcomes (VIDEO) Consortium, wanted to see whether a short video about CPR and intubation could affect a patient's end-of-life preferences. They found 150 patients, 76 years old on average, at MGH and Newton-Wellesley Hospital (which is in the Boston suburbs) who had serious health conditions and who doctors said had a year or less to live. Half of them, the control group, were given normal end-of-life care, including discussions with their doctors about CPR and intubation, as per the hospitals' policies. The other half was shown a three-minute video about CPR and intubation that sought to explain to patients exactly what these procedures entail. (I've requested a copy and will include it if the researchers send it.)

The results were pretty stark. Prior to the experiment, 84 percent of the control group and 81 percent of the video group said they wanted CPR if it was necessary to keep them alive. After the experiment, the control group's preference remained about the same (81 percent still wanted to be resuscitated), while the video group's preference fell severely: Just 43 percent of patients said they wanted CPR after seeing the video. The numbers for intubation were similar: For the control group, once again 84 percent wanted it before the experiment and 81 percent after, and for the video group there was a shift from 77 percent all the way down to 36 percent. Members of the video group who were discharged and later readmitted to the same hospital were also much more likely to refuse CPR and intubation upon their readmission, as compared to members of the control group who were similarly readmitted."

A Short Video, a Big End-of-Life Difference -- Science of Us

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“It’s Not That I Want to Die. It’s That I Want to Control My Own Suffering.”: Advocates urge Maryland lawmakers to pass tabled aid-in-dying bill. - Washington City Paper

 "In 2015, for the first time, Maryland’s legislature began considering a death with dignity bill, which would make it legal for physicians to help patients with a terminal prognosis of six months or less to end their lives. After two public hearings—one before the state’s House of Delegates, another before the Senate—the legislation was tabled for the remainder of the session. But after some tweaking, the bill’s sponsors say it will be back in the next session in January.

 If passed, Maryland’s death with dignity law would look much like Oregon’s. Three separate requests by the patient—first oral, then written, then oral again—would be required. Two witnesses would have to sign the written request, and at least one couldn’t be a relative or someone who will benefit financially from the patient’s death. Anyone who chooses to use the law would be marked as having died of natural causes, protecting life insurance policies.

 In her work as a patient advocate, Lange is intimately exposed to death in all its forms and progressions. She says she feels a sense of responsibility to the women she’s watched die and to the people “actively dying” who are too sick to come testify. On breast cancer, Lange is a public advocate, but on death with dignity she speaks as a private citizen who’s made it her business to openly and avidly support the legislative effort in Maryland."

“It’s Not That I Want to Die. It’s That I Want to Control My Own Suffering.”: Advocates urge Maryland lawmakers to pass tabled aid-in-dying bill. - Washington City Paper

For millennials in mourning, grief can run deep | Minnesota Public Radio News

Emily Kaiser's tips for grievers, coworkers and loved ones 
If your coworker is mourning:
• Send a personal email. The department-wide card is nice, but it limits your condolences to a couple words. Take the time to reach out and express condolences. It helps make their transition back easier, too, because you don't have to approach them in the workplace to express condolences in person, which can be awkward for both people. On their first day back, you can just say, "Good to see you! Welcome back!"
• Remember that grieving takes over their life. It's all they are thinking about. Be kind. Grief can take a toll on your memory, attention span, energy. It's hard to do simple tasks that feel so meaningless when you're deep in grief. Offer to take on some of their responsibilities to make it easier when they come back or if you notice them struggling. 
 • Make note of major holidays and anniversaries. Write down the day their loved one died. It never hurts to just send people an email on holidays (think Mother's Day and Father's Day) or anniversaries to say you're thinking about them.
If your friend/family member is mourning:
 • Avoid all the awkward and unhelpful comments. You don't need to say things that make the loss OK. No need for "They are in a better place," "At least you got ___ years with them," "At least they aren't suffering anymore," "They wouldn't want you to be sad." Don't tell them about the stages of grief; that strict timeline has been debunked and leads people to feel they are grieving wrong. 
• Just listen. Ask them how they are doing, and really want to know the answer. Let them vent, cry, scream or even sit in silence. You don't need to offer solutions or fix anything. 
• Keep in touch. People are often flooded with calls, cards, messages for the first month after a death. Then people start to go back to their lives and that contact drops. I recommend putting reminders in your calendar to get in touch so you don't forget. You can send them a message that you're thinking about them, see if they're up for hanging out or pass along a moment you thought about their loved one or a good memory you remembered recently. And don't expect a response. They read it and definitely appreciate it, but sometimes they aren't in a place to respond. 
 • Help them keep their loved one alive. Ask your friend to tell you stories about the person. Share your memories. A big fear is that our loved one will be forgotten. We want to be reminded that this person's life mattered. 
• Come up with laid-back ways to spend time together. Bring a movie over or some donuts. Go for a walk. Sometimes going out in public with a lot of people is too stressful. Don't ask what your loved one wants; they don't know what they need. Just be there, be a distraction if needed, and do easy activities together.

If you're mourning:
• Be kind to yourself. You will be consumed by your grief. You will think about your loved one constantly. It's natural and OK! 
• Find a grief group, individual therapy or others you can meet with that have similar experiences. You'll feel less alone in your grief and have a person who is solely there to listen. I found a lot of comfort knowing I had that set hour of time where I could be fully in my grief and that was OK. Finding a group with similar experiences eliminates the awkwardness you might find with your peers. You can talk about your lives with people who know they can't fix it and just listen. 
• Find ways to bring your loved one to life in your daily routine. Place some of their possessions in places you can see them. Tell people stories about your loved one, especially stories that show off their personality and humor. Make their favorite meals and talk about your memories when you share it with others.

• Cherish the items you have that remind you of their love for you. My mom didn't leave any kind of "goodbye" letter, and by the time we knew she was really dying, she wasn't able to communicate with us to talk about those things. I went back and found letters, notes, emails and voicemails from her, in which she expressed how much she loved me, how proud she was, what she saw for my future. Those notes are a major comfort when I am craving my mom's love again.

For millennials in mourning, grief can run deep | Minnesota Public Radio News

Letting Go and Moving On | A Father's Loss

 "Let’s look at letting go

I will say that you will never let go. This is a bad way to put it. When you say letting go makes it sound as if you are going to let go of that person and not think of them again. In other words let's look at it this way:

Letting go of the pain

Letting go negative thoughts

Letting go of the people who don’t understand you

Letting go of the walls you have put up

Letting go of the hurt that others have cause you

Letting go means you can forgive

Letting go doesn’t mean we forget

In other words say that you are letting go of everything that has to do with the circumstance surrounding your loss, not your loved one.  They will always be with you. Keep them close in your heart and thoughts."

Letting Go and Moving On | A Father's Loss:

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Saturday, July 25, 2015

A Final Cocoon: Dying at Home - The New York Times

 "According to the National Hospice and Palliative Care Organization, most Americans — 80 percent, one survey reported — would prefer to die at home. It’s a choice that necessitates a number of physical changes, like setting up medical equipment and bringing in a hospital bed. For some people, however, what matters more is altering their environment in a way that makes them feel better emotionally — creating a place that represents their final idea of home. Family members often find the process surprisingly helpful as well."

A Final Cocoon: Dying at Home - The New York Times

Oliver Sacks and the Art of Dying

Oliver Sacks dying of metastatic melanoma may have been just another story of misfortune in a world spilling over with bad news were it not for something that caught my eye towards the middle of his column. He lists symptoms of nausea, loss of appetite, chills and sweats and a pervasive tiredness, all cardinal signs of worsening cancer. He tells us he is still managing to swim although the pace is slower as he pauses to breathe. And then, he says something utterly obvious and yet, thoroughly remarkable: “I could deny it before but I know I am ill now.” Patients who can get even part of the way to acknowledging their mortality ultimately do themselves an untold favour. In a piece of achingly beautiful writing, this observation may bypass the typical outsider but as an oncologist, it struck me as the essence of what it takes to die well – the concession that all the well-intentioned therapy in the world can no longer prevent one from going down the irreversible trajectory of death....[T]he doctor who brought to us the man who mistook his wife for a hat isn’t about to mistake death for what it is. Now he reminds us with all the poise and dignity we have come to expect of him that there is value in embracing our mortality, that there is an art to dying, and before he goes, he might just show us how. For this and so much more, we owe him.
From the Guardian

Person-Centered Matters: Making Life Better for Someone Living With Deme...

Friday, July 24, 2015

A Group Portrait of New York’s ‘Oldest Old’ - The New York Times

 "Early this year, I began visiting these six elders, asking simple questions about their lives. What gets them going in the mornings? What are their aspirations, their concessions to age? Do they want to live to 100? Without the daily drumbeat of work or family responsibilities, where do they find meaning and purpose?

Men and women age 85 and above are one of the city’s fastest-growing groups, but they are almost invisible. It is a time of love, pain and abrupt change. Six New Yorkers share their stories.

What they shared, each in a different way, was a story of abrupt change — the loss of a spouse or a home, a sudden turn in health, the arrival of new love, the pain that signals only more pain to come. At the beginning and the end, life moves quickly.

Two of the six planned to live to extravagant ages. Two said they were ready to die. One lived in a nursing home, one in a third-story apartment with no elevator. Two talked about sex. One mourned for her home and the friends she had to leave behind, one for his partner of 60 years.

They buried brothers, sisters, parents, children, peers. They lived through the Depression, World War II, Nazi labor camps and the AIDS epidemic, but now they often find themselves with no one to listen to their memories.

Few ever expected to be so old. None had a formula for how to do it."

A Group Portrait of New York’s ‘Oldest Old’ - The New York Times:

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Oliver Sacks: My Periodic Table - The New York Times

 "I almost certainly will not see my polonium (84th) birthday, nor would I want any polonium around, with its intense, murderous radioactivity. But then, at the other end of my table — my periodic table — I have a beautifully machined piece of beryllium (element 4) to remind me of my childhood, and of how long ago my soon-to-end life began."

Oliver Sacks approaches his death with thoughts of the periodic table that fascinated him as a child.

Oliver Sacks: My Periodic Table - The New York Times

"You can trust a human being with grief." "Grief is just love squaring off against its oldest enemy." Kate Braestrup A chaplain helps others cope with death. #MothPodcast

7 Reasons Why We Need the CDC to Track Family Caregiver Stress |

Here’s why we need to track family caregiver stress:

 1. It disrupts the relationship in the health care system between health care provider and family caregiver. According to research released in June, only 1 in 3 family caregivers (32%) say that a doctor, nurse or social worker asked them about their caregiving experience. Only 16% said a health provider asked about their self-care. When a nurse or doctor or social worker asks a family caregiver about his or her stress, a conversation happens. The health care professional now understands the complexity of each caregiving situation and can better prescribe treatments and offer solutions. Another initiative that calls for family caregivers to be designated as such in the a patient’s health care record could easily be done during the assessment.

2. We capture better data. Research released last month indicated that an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. Two years ago, research said that two out of our every five U.S. individuals (more than 90 million persons) care for an adult or child with significant health issues. In 2009, research said that 29% of the U.S. adult population, or 65.7 million people, are family caregivers. In essence, we don’t know how many individuals in the U.S. provide care to a family member or friend. Tracking family caregiver stress helps us pinpoint a true number.

3. We also better understand how many stressed family caregivers we have and the cause of the stress. Sometimes, stress comes from the situation, the health care system, the finances, the family dysfunction, the care provided. And, sometimes it relates to a lack of community programs and services. When we track family caregiver stress and its cause, we hone in on community-specific problems, which means we can tailor solutions to what communities need. When understand their stress, we can better support and help family caregivers.

4. We fund solutions that work. When we track family caregivers in the health care system to better understand their stress, we also connect with family caregivers who cope well with their stress. We can understand how they cope. Do they use a community service, a caregiving website, a program at their house of worship? Knowing what helps family caregivers cope means we can make that coping strategy more readily available. We won’t recreate the wheel but rather funnel more money to successful programs and services so they stay that–successful and accessible. (Read: Where’s Our WPA for Caregiving?)

5. We move from data to stories to understanding. Data is helpful but stories are transformative. We need health care professionals to hear the stories of family caregivers. When health care professionals listen to what caregiving is really like, they learn how to better help family caregivers. And, one of the best ways to help a family caregiver is to simply listen.

6. We do what we’re already do to track epidemics (like the flu and ebola) but in a more meaningful, deliberate, expansive way. The CDC knows how to successfully track epidemics. We just need it to track this epidemic–family caregiver stress. 

7. Finally, we save money when we care for the true health care providers in our communities–family caregivers, those individuals who care for a family member or friend. When we support and care for family caregivers, individuals whose work is valued at about $450 billion, we save money. Health care professionals didn’t balk at tracking ebola and report in flu numbers every year. This shouldn’t become a discussion about reimbursement but a commitment to doing better. Let’s just do the right thing–let’s track family caregiver stress. Because, some day, that health care professional who steps up to help a family caregiver could some day be that family caregiver who receives help–all because we put a system in place to track family caregiver stress.

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End of Life: Engage with Grace

7 Signs You’re Experiencing Unresolved Grief - The Grief Recovery Method

Here are common indicators that you are experiencing unresolved grief:

•    Do you refuse to talk about your loss?

•    Do you avoid thinking about your loved one who died because good memories painful?

•    Do you avoid places or events that remind you of someone who died?

•    Do you only talk about their positives, refusing to admit they might have had some negative qualities too?

•    Do you keep the same exact routines you did when they were still alive because you're afraid you will forget them?

•    Do you only talk about their negatives qualities as if they never did anything good?

•    Do you avoid getting close to people? Unresolved grief is usually at the root of fear about any new relationships.

7 Signs You’re Experiencing Unresolved Grief - The Grief Recovery Method

Parental Loss: Queen Anne’s Lace and the Slow Process of Grief

I wish it were as easy to close the book on my parents’ lives as it is to take care of their legal affairs. And believe me, that has been a huge challenge. You would think they left a huge estate judging by the number of phone calls to their lawyer, Mom’s senior living community, and Dad’s investment broker. Then there were all of the tasks involved in clearing out Mom’s apartment and divvying up its contents. As my brothers and I near the end (we hope) of this process, I find myself more melancholy. With less stuff to do comes more time to reflect.

When my father died three years ago, I didn’t fully mourn. Mom needed my support. She had to move. She was sick. She broke her hip. Our relationship evolved into daily phone calls in which she shared her worries, fears, and triumphs. Sometimes, she would call to ask if I had been the person who called her (she never understood how to retrieve messages) or she would call when I was in the middle of a meeting to share some gossip. Now, I find myself missing those calls that sometimes felt like an obligation or an intrusion into my own busy life. At some point every day, I find myself thinking, “This would be a good time to call Mom.”

Parental Loss: Queen Anne’s Lace and the Slow Process of Grief

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Seamus Heaney's Poem About His Father Getting Old

Follower by Seamus Heaney

My father worked with a horse-plough,
His shoulders globed like a full sail strung
Between the shafts and the furrow.
The horses strained at his clicking tongue.

An expert. He would set the wing
And fit the bright steel-pointed sock.
The sod rolled over without breaking.
At the headrig, with a single pluck

Of reins, the sweating team turned round
And back into the land. His eye
Narrowed and angled at the ground,
Mapping the furrow exactly.

I stumbled in his hobnailed wake,
Fell sometimes on the polished sod;
Sometimes he rode me on his back
Dipping and rising to his plod

I wanted to grow up and plough,
To close one eye, stiffen my arm.
All I ever did was follow
In his broad shadow round the farm.

I was a nuisance, tripping, falling,
Yapping always. But today
It is my father who keeps stumbling
Behind me, and will not go away.

Wednesday, July 22, 2015

Blog — The Battle We Didn't Choose

 "Jen’s death has pushed me to accept that one day I will die. It is inevitable. I am not saying that I am not afraid of death, but by accepting my own mortality I have embraced that I am alive. I am healthy. I have a roof over my head. I am loved and able to love. 

I don't mean to sound idealistic and I know that life is not always great. I watched the woman of my dreams take her last breath. It was on me. There are definitely days when I want to stay under the covers. 
But I am still alive. I want to embrace every moment and search with all of my heart for something in every day that makes me smile. This may be something as simple as the sound of my cats purring or the smell of a spring breeze. I will not take life for granted."

Blog — The Battle We Didn't Choose:

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Caring For Persons With Dementia - 5 Things To Avoid

Tuesday, July 21, 2015

What to say with someone with cancer

 "Do Say:

"Hello, how are you?"

People with cancer still have good days and bad, to say "Hello how are you is fine" (unless it's a bad day, and the response may be, "How the hell do you think I am?!")

Don't say:

"First Hayley Cropper, and now you! Why why why?!"

Do say:

"So, what have you been up to?"

Living with cancer doesn't stop you from living, unless they're not living, and if that's the case, by asking "What have you been up to?", won't cause much offence anyway.

Don't say

"WOW, you look really shit!"

Cancer can slightly affect your esteem so tread carefully when talking about looks.

Do say:

"So, any news?"

People with cancer sometimes want to talk about cancer, but then sometimes they don't. Let them lead the conversion.

Don't say:

"Will you stop bloody complaining, you think you feel bad, you're giving me a headache!"

Surviving pancreatic cancer and my street food life: What to say with someone with cancer

Sunday, July 19, 2015

When Memory Fades -- Have Your Finances in Order

From Merrill Lynch:

The early indications of cognitive decline are often hard to identify. "But one of the first skills to deteriorate is financial capacity, and difficulties with finances may sometimes even precede the official diagnosis of Alzheimer's disease," says Joseph Coughlin, director of the Massachusetts Institute of Technology's AgeLab. What starts as neglecting to pay bills can accelerate to impulsive spending or frequent odd purchases.
In some cases, "someone who is paying attention to a person's finances may be the first to notice unusual behavior," says Leland. "The person may make unusually large withdrawals from an account, run up credit-card charges, impulsively add another individual to an account, or call their financial advisor multiple times a day."
One way for family members to get an early warning about potential cognitive issues is through the Merrill Lynch Client Contact Authorization Form, notes Hutchins. "It authorizes your advisor to reach out to a family member or someone else you trust if problems arise.
"Naming someone on the form doesn't give that person authority to make financial decisions on your behalf," she adds. "But it provides a way to alert family members about a problem that needs their attention."   

When Memory Fades

60 Minutes: Barbara Mancini was arrested and charged with helping her dying father kill himself.

Anderson Cooper talks to Barbara Mancini about end of life issues, palliative care, and her decision to obey her terminally ill father's wish to take an overdose of medication. They explain that advanced directives are not necessarily controlling. Both sides present their views, those who want to give dying patients the right to make their own decisions and those who think the solution is better comfort care, which prevents the risk of allowing depressed patients to choose suicide when perhaps they should not. "I don't know why better end of life care and death with dignity cannot co-exist," Mancini says. The charges against her were dropped.

Thursday, July 16, 2015

2 Phone Tips For The Elderly - Caregiver Finances

"Technology is often more of a problem than an aid.

After a long day at work and a visit to the doctor’s office or to the grocery store to pick up dinner these technology hiccups can drive the most patient family caregiver crazy.

Communication is the number one way family caregivers stay in touch.  If the coordinator of care lives several states away or even a 15 minute drive a high quality phone connection is essential." I would add the Presto, for those who cannot use a computer.  It turns emails into faxes, so that someone who cannot use a computer can still receive messages and photos.

2 Phone Tips For The Elderly - Caregiver Finances:

Wednesday, July 15, 2015

Dying to Know Day and Death Stories

The Parlor: "This Parlor event is in commemoration of Dying to Know Day. D2K Day is dedicated to bringing to life conversations and community actions about death, dying, and bereavement. In our first-ever installment of Mortality Monologues, we invite you to share your stories with us.
If you would like to recite a favorite death poem or passage, relay a personal grief anecdote that you have a yearning to get off your chest, or if you'd prefer to facilitate a dialogue about mourning with the audience - we utter a resounding yes to all."

Aid-in-Dying Laws Are Just a Start - The New York Times

"I support freedom of choice. But after shepherding my parents through their last years, I doubt that legalizing aid in dying alone will end the current epidemic of unnecessary deathbed suffering.

The way the medical system handles death is broken, and requires bigger fixes than freedom of consumer choice. Many of us will face quandaries far too nuanced to be solved by aid-in-dying laws. "

Aid-in-Dying Laws Are Just a Start - The New York Times:

The Error in 'There's Nothing More We Can Do' - The New York Times

"“There’s nothing more we can do.”

These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.

Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?

“If I had a magic wand, what is it you would wish for today?” This is a question I ask of my patients receiving hospice and palliative care.

No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of “make my anxiety go away” or “let me travel to see my family” and “let me go home and sit in my garden.”"

The Error in 'There's Nothing More We Can Do' - The New York Times:

Eric Clapton - Tears In Heaven (Official Video)

Tuesday, July 14, 2015

Book About Grief for Kids: A Monster Calls

A Monster Calls: Inspired by an idea from Siobhan Dowd A
t seven minutes past midnight, thirteen-year-old Conor wakes to find a monster outside his bedroom window. But it isn't the monster Conor's been expecting-- he's been expecting the one from his nightmare, the nightmare he's had nearly every night since his mother started her treatments. The monster in his backyard is different. It's ancient. And wild. And it wants something from Conor. Something terrible and dangerous. It wants the truth. From the final idea of award-winning author Siobhan Dowd-- whose premature death from cancer prevented her from writing it herself-- Patrick Ness has spun a haunting and darkly funny novel of mischief, loss, and monsters both real and imagined.

Monday, July 13, 2015

Epitaph on Elizabeth L. H. by Ben Jonson

Wouldst thou hear what man can say In a little? Reader, stay. Underneath this stone doth lie As much beauty as could die; Which in life did harbour give To more virtue than doth live. If at all she had a fault, Leave it buried in this vault. One name was Elizabeth, Th' other let it sleep with death: Fitter, where it died to tell, Than that it liv'd at all. Farewell.

Comfort In, Dump Out -- The Ring Rule to Keep You From Saying the Wrong Thing

Follow this rule, and you will know what to say to someone who is ill or suffering.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.
Comfort IN, dump OUT. 

Friday, July 10, 2015

Book on How Men Grieve -- Swallowed by a Snake

Swallowed by a Snake: The Gift of the Masculine Side of Healing by Thomas R. Golden is a helpful guide for couples and families who find that grief is isolating them rather than bringing them closer.  Different people may mourn differently and it is important to respect and support each person's method of dealing with loss without judging or weighing each other's feelings.

Poem: Epitaph by Merrit Malloy

When I die

Give what's left of me away

To children

And old men that wait to die.

And if you need to cry,

Cry for your brother

Walking the street beside you.

And when you need me,

Put your arms

Around anyone

And give them

What you need to give to me.

I want to leave you something,

Something better

Than words

Or sounds.

Look for me

In the people I've known

Or loved,

And if you cannot give me away,

At least let me live on your eyes

And not on your mind.

You can love me most

By letting

Hands touch hands,

By letting

Bodies touch bodies,

And by letting go

Of children

That need to be free.

Love doesn't die,

People do.

So, when all that's left of me

Is love,

Give me away.

Wednesday, July 8, 2015

Medicare Proposes Paying Doctors for End-of-Life Counseling - The New York Times

Medicare Proposes Paying Doctors for End-of-Life Counseling - The New York Times: "Medicare, the federal program that insures 55 million older and disabled Americans, announced plans Wednesday to reimburse doctors for conversations with patients about whether and how they would want to be kept alive if they became too sick to speak for themselves.

The proposal will be open for public comment for 60 days, but it is expected to be approved and to take effect in January. If adopted, it would settle a debate that raged before the passage of the Affordable Care Act, when Sarah Palin labeled a similar plan as tantamount to setting up “death panels” that could cut off care for the sick.

Medicare’s plan comes as many patients, families and health providers are pushing to give people greater say about how they die — whether that means trying every possible medical option to stay alive or discontinuing life support for those who do not want to be sustained by ventilators and feeding tubes."

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Good grief! What I learned from loss | Elaine Mansfield | TEDxChemungRiver

Funeral Homes Using Dogs to Comfort Mourners

The Associated Press has a story about the use of dogs to comfort mourners.
Funeral directors say dogs, especially trained therapy animals, can lighten the often awkward, tense atmosphere at a wake or funeral service, and sometimes seem to know exactly who needs their help.
Whenever a dog joins a group of mourners, "the atmosphere changes," said Mark Krause, owner and president of Krause Funeral Home and Cremation Service in Milwaukee. "In a funeral home, people are typically on edge, uncomfortable. But everyone lights up, everyone has to greet the dog."

Tuesday, July 7, 2015

Why we should share our stories of loss and disappointment | Rebecca Pey...

Constance Mourns Her Son: Shakespeare

I am not mad: this hair I tear is mine;
My name is Constance; I was Geffrey's wife;
Young Arthur is my son, and he is lost:
I am not mad: I would to heaven I were!
For then, 'tis like I should forget myself:
O, if I could, what grief should I forget!
Preach some philosophy to make me mad,
And thou shalt be canonized, cardinal;
For being not mad but sensible of grief,
My reasonable part produces reason
How I may be deliver'd of these woes,
And teaches me to kill or hang myself:
If I were mad, I should forget my son,
Or madly think a babe of clouts were he:
I am not mad; too well, too well I feel
The different plague of each calamity.

King John, Act III, Scene iv

Who Has the Right to a Dignified Death? - The New Yorker

The right-to-die movement has gained momentum at a time of anxiety about the graying of the population; people who are older than sixty-five represent the fastest-growing demographic in the United States, Canada, and much of Europe. But the laws seem to be motivated less by the desires of the elderly than by the concerns of a younger generation, whose members derive comfort from the knowledge that they can control the end of their lives. Diane Meier, a professor of geriatrics at Mount Sinai School of Medicine, in New York, and one of the leading palliative-care physicians in the country, told me that “the movement to legalize assisted suicide is driven by the ‘worried well,’ by people who are terrified of the unknown and want to take back control.” She added, “That is not to say that the medical profession doesn’t do a horrible job of protecting people from preventable suffering.” Like most doctors who specialize in palliative care, a field focussed on quality of life for patients with severe and terminal illnesses, she thinks legalizing assisted suicide is unnecessary. “The notion that if people don’t kill themselves they’re going to die on a ventilator in the hospital would be humorous if it weren’t so serious,” she said. She believes that the angst propelling the movement would be diminished if patients had greater access to palliative care and if doctors were more attentive to their patients’ psychological suffering. 

Who Has the Right to a Dignified Death? - The New Yorker

'No One Should Have The Right To Prolong My Death' : Shots - Health News : NPR

"I'm not afraid of death," she told me. "I have been comfortable with the concept of my own mortality for a long time, long before my diagnosis."

But what she is afraid of, she said, is the particular brutality of a cancer death, "drowning in my own lung fluids with my family watching me suffer." Her husband knows about such death first hand, having watched both his parents die from cancer — something he and Glass talked about on their very first date.

'No One Should Have The Right To Prolong My Death' : Shots - Health News : NPR:

Wayne Coyne on Living with Death | Blank on Blank | PBS Digital Studios

"Lament" by Edna St. Vincent Millay, recited by The Wordman

Monday, July 6, 2015

Empathy Cards That Really Provide Comfort from Cancer Survivor Emily McDowell

Emily McDowell has a terrific line of comforting cards and gifts that say the right thing.

A Doctor on How Physicians Face the End of Life - WSJ

A Doctor on How Physicians Face the End of Life - WSJ: "It's not something that we like to talk about, but doctors die, too. What's unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.


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The Dying of the Light

The Dying of the Light: "[N]ever before in history has it been so hard to fulfill our final earthly task: dying. It used to be that people were "visited" by death. With nothing to fight it, we simply accepted it and grieved. Today, thanks to myriad medications and interventions that have been created to improve our health and prolong our lives, dying has become a difficult and often excruciatingly slow process."

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Our unrealistic views of death, through a doctor’s eyes - The Washington Post

Our unrealistic views of death, through a doctor’s eyes - The Washington Post: "The family may ask me to use my physician superpowers to push the patient’s tired body further down the road, with little thought as to whether the additional suffering to get there will be worth it. For many Americans, modern medical advances have made death seem more like an option than an obligation. We want our loved ones to live as long as possible, but our culture has come to view death as a medical failure rather than life’s natural conclusion."

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How Therapists Mourn - The New York Times

How Therapists Mourn - The New York Times: "I notice that I’ve developed an automatic rite of remembrance. Whenever my fingers graze one of the file folder tabs of a dead patient, I stop and close my eyes for the briefest moment. I pay silent homage to the deceased.

There is grist here for the interpretive mill. Am I asking forgiveness for having made mistakes? For not having done enough? Perhaps I’m warding off my own fears of being locked away and forgotten someday.

Whatever other meaning there may be in these small, private ceremonies, I believe they primarily speak to the isolation of the therapist when patients die, and the human need to create ritual when death occurs. Therapists do not typically socialize with the people in their patients’ lives. There is no one for me to call about Joseph — no family or friends with whom to share memories, to laugh or to cry.

Don’t misunderstand me; I’m not asking for sympathy. There is no comparing my loss to that of a patient’s family and friends. Yet this is an aspect of my profession that is seldom discussed: Just as what takes place in therapy occurs behind closed doors, so too does the therapist’s grieving after a patient dies.

Therapists mourn alone."

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Sunday, July 5, 2015

Helping children say goodbye

Helping children say goodbye | Albert Lea Tribune: "Question: 

What do I say to a child who did not get to say “goodbye” to a special grandfather before he died?


No matter how old we are, we can carry grief over not “being there” to say goodbye to someone important to us. I have appreciated the insights of Darcie Sims, a bereaved parent, psychotherapist and nationally known speaker and author, who herself died this year in February. She would say,

“Goodbye? Why would I want to say goodbye?  I wasn't through saying hello!” Darcie Sims would also share her story: “Twenty-five years ago, I did get to say goodbye.  I knew the end of our son’s life was approaching and I got the chance to give one last hug and say one last sentence. I got the chance to say goodbye and I didn’t take it.  In the last moments of my son’s life and years later, of my parent’s lives, I did not say goodbye. With the very last breath of my son’s life, I simply said, ‘I love you.’  I was able to be with my mom in her final hours and I did not say goodbye. I said, ‘I love you.’ And although I was not with my dad when he died, when I left his home on what was to be his last night, I kissed him and said my last words to him, ‘I love you.’ Let go of the hurt you are experiencing if you did not get to say goodbye. You would not have said it, even if you had the chance. You would have said, ‘I love you.’”

Take some time to make your child’s own picture book of photos of that special grandfather. At the beginning of the book write the words, “Hello, Grandpa!” Above each photo write, “I remember . . . ”  At the close of the book, write, “I love you Grandpa.” 
If you would like to talk about the challenges in raising children, call the toll-free Parent WarmLine at 1-888-584-2204/Linea de Apoyo at 1-877-434-9528. For free emergency child care call Crisis Nursery at 1-877-434-9599.  Check out and Grief, Trauma and Loss: Helping Children Cope CD (Foster W. Cline, M.D.) at the PRC Specialty Library (105 First Street SE, Austin)."

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Store and Share Everything Important | Everplans

Everplans provides a service that keeps everything your family needs for the end of life, including:

Prepare your family for the unexpected

An Everplan is a secure, digital archive of everything your loved ones will need should something happen to you. It contains:

  • Free estate planning documents including Wills
  • Free Living Wills and Health Care Proxies
  • Info about your home: bills, vendors, etc.
  • Health and medical information
  • Advance Directives and DNRs
  • Final wishes and funeral preferences

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Doonesbury: Death As an Art Form

Copyright GB Trudeau 2015

One Sweet Day - Mariah Carey - Boyz II Men

Saturday, July 4, 2015

Death Walking - The Sacred Role of Accompanying the Dying

Death Walking - The Sacred Role of Accompanying the Dying: "I was only 32 when I found myself, for the first time, in the heartbreakingly difficult position of accompanying a loved one through the dying process."

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What should we call the physician-assisted act of intentionally killing oneself near the end of life | GeriPal - Geriatrics and Palliative Care Blog

What should we call the physician-assisted act of intentionally killing oneself near the end of life | GeriPal - Geriatrics and Palliative Care Blog: "Here are the leading options:
Death with Dignity: I know what I’m about to say will be taken as a great offense to some who read this blog, but come on. This is just pandering. The term is vague and value laden that offers nothing to the debate over the topic except spin. It also makes it seem like this is the only road to go if you want dignity at death. 
Physician-aid in dying (PAD): I’m not loving this one either mainly because of a loss of specificity. Are we providing people aid that are dying by focusing on their comfort or are we aiding them to die by giving them medications with the intent to end their lives? Only the latter is correct but people may confuse the former with it 
Aid in Dying: I’m not even sure what to do with this one. Who is aiding who with what again
Physician Assisted Death (another PAD): I'll talk more about this below, but this makes it unclear if we are including euthanasia
Physician Assisted Suicide (PAS): this is probably the most specific term for the physician assisted act of killing oneself intentionally. However I do realize that many criticize this definition as suicide is linked with mental illness and lack of decision-making capacity (both of which may I add shouldn't be stigmatized either)

With all of this said, I feel the most technically correct phrase to use is Physician Assisted Suicide (sui: of oneself + caedere: kill)."

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The GroundSwell Project and #dyingtoknowday

The GroundSwell Project: "The GroundSwell Project is a not for profit organisation known for using innovative arts and health programs to create social and cultural change about death and dying. 

Our aim is to promote resilience and wellbeing in response to end of life issues and to encourage people to build their death literacy. 

Who are we? A committed team of artists, arts practitioners, health professionals, bloggers, film-makers, teachers, nurses, leaders, techy types, playwrights, business professionals, innovators, writers, researchers, story-tellers. "

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Friday, July 3, 2015

A Husband Mourns His Wife, Right to Die Advocate Lecretia Seales

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It’s only now that I am beginning to really come to terms with what losing Lecretia means, and how much she was so foundational to who I’ve become over these past twelve years. With her gone, there is this massive absence, and things that I was so sure of, and that I took for granted, are no longer there. I keep reaching out to latch on to assumptions about life I thought I could be sure of, and find that what I thought was firm and solid ground has given way to an abyss.
All those things that Lecretia meant to me, I am still attached to. They abide in me like hunger and thirst. And when I try and draw sustenance from the same places, out of habit, there’s now nothing. I know that I will need to find things to fulfill those needs somehow – the physical, the mental, the social, the romantic – but I know it’s months or more likely years before that will happen. For now I’ll have to endure this hunger and emptiness and it will always be a feature of who I am. I’ve spoken to a few people who have lost partners and they say similar things. It takes time, and it gets easier, they say, but it never really goes away.
There is this strange sense that I am not mourning often enough, or deeply enough. That the intensity of my grief should be a perfect reflection of the passion I had for my wife. That I have short-changed her memory somehow, ridiculously, by not being utterly inconsolable for weeks on end. But the loss is felt in moments – as sudden pangs or vertiginous stumbles – and then they pass. It’s sorrow but equally a profound sense of unfairness.
And then again:
“… this separation, I suppose, waits for all. I have been thinking of H. and myself as peculiarly unfortunate in being torn apart. But presumably all lovers are.”
The injustice, if there was one, was not the passing itself, which was inevitable, but the timing, which was too soon. I feel for Lecretia’s parents most of all, as although all lovers must inevitably part, children almost always survive their parents, and that didn’t happen this time. And what an extraordinary expression of their love Lecretia was. How great their sense of loss must be.
I am not sure what comes next. I feel unsettled. I think I want to disappear for a while, perhaps visit some of the places that Lecretia had wanted to visit, but I don’t feel like I can until I get Lecretia’s affairs in order, which I have begun to do. I have known people to become reckless and irresponsible with their lives through grief. I don’t feel like that’s going to happen to me. I carry her with me now, and at the moment I feel like I have a duty to honour her memory by being my best self. But I am not out of this process yet, and I think I have some way to go. There is much to do.

How to Talk About Dying -- Ellen Goodman on Starting the Conversation

How to Talk About Dying - The New York Times: "We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.

In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.

From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.

Our starter kit asks what matters to you, not what’s the matter with you. "

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Poem: And Death Shall Have No Dominion by Dylan Thomas

And death shall have no dominion.
Dead man naked they shall be one
With the man in the wind and the west moon;
When their bones are picked clean and the clean bones gone,
They shall have stars at elbow and foot;
Though they go mad they shall be sane,
Though they sink through the sea they shall rise again;
Though lovers be lost love shall not;
And death shall have no dominion.

And death shall have no dominion.
Under the windings of the sea
They lying long shall not die windily;
Twisting on racks when sinews give way,
Strapped to a wheel, yet they shall not break;
Faith in their hands shall snap in two,
And the unicorn evils run them through;
Split all ends up they shan't crack;
And death shall have no dominion.

And death shall have no dominion.
No more may gulls cry at their ears
Or waves break loud on the seashores;
Where blew a flower may a flower no more
Lift its head to the blows of the rain;
Though they be mad and dead as nails,
Heads of the characters hammer through daisies;
Break in the sun till the sun breaks down,
And death shall have no dominion. 

Thursday, July 2, 2015

National Bereavement Camp Conference -- for Facilities to Help Children With Loss

Moyer Foundation - Events: "

 The Moyer Foundation is excited to announce that the 2015 National Bereavement Camp Conference (NBCC) will be held November 16 & 17, 2015 in Washington, D.C., at the Liaison Capitol Hill. The NBCC is presented in partnership with the New York Life Foundation.  Questions? Contact Bethany Gardner, Camp Erin Program Manager, at or (206) 298-1217.

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Mourning a Mother by Helping Others Who Mourn

Grief Has No Age | National Alliance for Grieving Children: "Every day I think of her and what could have been, but I also know that I would be different, my path in life would have been different. Death is a part of life, but when you experience the loss of a parent as a young child without the proper tools grief is very hard to work through.

This life was handed to me because I am strong enough to live it and if I can be of help to just one person, one child, then it has been worth all the pain.

This is my life's purpose, this writing (righting) here, right now.... My story.

Grief has no time limit, no age.

I was put on this earth to change the future for someone, and in a beautiful way I am finally finding closure -- because I too, am still a grieving child.


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Grief is NOT Self-Pity, Joel Osteen | The Rev. Sue Wintz

The popular minister is getting a lot of comments on his statement that grieving too long is attention-seeking and people should get over it.
Allowing mourners to be in their pain, without trying to make them change how they feel (often to make yourself and said others feel better), would actually be a more compassionate and more Christlike response. Why? Because trying to force a grieving person to feel better is like telling a double amputee to get up and run before she is ready: it's insensitive, lacks circumspection, and certainly doesn't even remotely resemble compassion. And Jesus seemed intent on compassion for the weakest amongst... didn't he? Are we talking about the same guy?
I suspect the psychological responses of the couple to whom you make reference in your book were exacerbated by judging others who, like you, are likely terrified to imagine what it would be like to see your own child's dead, cold body laying in a casket. I do understand. That is not an image you want in your mind is it, sir. 
So, instead of joining them in imagining that horror, one you really can never fathom until it is happening and, even then, the brain does all it can to protect itself from the utter atrocity of the experience, you -- and others - -use spiritual bypass to "lift up" -- only for many, these pushes toward premature healing don't lift up grieving parents -- they tear down and alienate and ostracize those who most need comfort and solidarity.
By joining them in the abyss, rather than "lifting them (forcibly) up," they see that others have stood by them, borne witness to their suffering, not averted their gaze, have offered their nonjudgmental heart and compassion, slowly, ever so slowly, integration comes. 
No, they do not "like the attention." No, they are not slathering in what you call "self-pity." Their child is dead.

Slate's Dear Prudence Gets a Letter About Notifying Friends and Family of a Terminal Diagnosis

Dear Prudence: Should I tell people I might be dying, or spare everyone the goodbye?:

A disease I’ve been dealing with for several years has taken a turn for the worse. I don’t have a terminal diagnosis yet but, depending upon upcoming tests and possible treatment, I could have a week, a month, six months. My physician brought up palliative care for the first time. Last winter one of my long-time friends died; I was terribly hurt that his wife failed to inform me he was even sick—I heard it through the grapevine. Upon consideration, I decided perhaps my friend had chosen to spare me (and himself) my despair and a tearful good-bye. Another friend told me when her husband was in hospice, his good friend Tom wept so much through a difficult final visit that afterward the dying man weakly said to his wife, “No more Tom.” Do I inform my long-time friends, particularly those whom I’ve loved deeply but who live far away, that I have one foot in the grave? If not, do I write a letter to each of them to be mailed at my death, explaining my decision and how much their friendship meant to me? 
I agree with Prudence that the letter-writer should trust his or her instincts and was glad to see she suggested resources like Lotsa Helping Hands.

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Nora Ephron’s Final Act - The New York Times

Nora Ephron’s Final Act - The New York Times:

Nora Ephron's son wrote about her illness and last days, with this quote from her about facing death:

"The realization that I may have only a few good years remaining has hit me with real force, and I have done a lot of thinking as a result. I would like to have come up with something profound, but I haven’t. I try to figure out what I really want to do every day, I try to say to myself, If this is one of the last days of my life, am I doing exactly what I want to be doing? I am low. My idea of a perfect day is a frozen custard from Shake Shack and a walk in the park. (Followed by a Lactaid).”"

'via Blog this'
Imagine This

by Freya Manfred

When you're young, and in good health,

you can imagine living in New York City,

or Nepal, or in a tree beyond the moon,

and who knows who you'll marry: a millionaire,

a monkey, a sea captain, a clown.

But the best imaginers are the old and wounded,

who swim through ever narrowing choices,

dedicating their hearts to peace, a stray cat,

a bowl of homemade vegetable soup,

or red Mountain Ash berries in the snow.

Imagine this: only one leg and lucky to have it,

a jig-jagged jaunt with a cane along the shore,

leaning on a walker to get from grocery to car,

smoothing down the sidewalk on a magic moving chair,

teaching every child you meet the true story

of this sad, sweet, tragic, Fourth of July world.

What Doctors Forget to Ask: What Do You Want from Your Care?

Mitch Kaminski writes in The Washington Post about the question doctors should always ask:
Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?” I pause, then look this frail, dignified man in the eye. “What are your goals for your care?” I ask. “How can I help you?” ... A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”

How to Write Your Own Eulogy

How to Write Your Own Eulogy

This beautiful essay by Rabbi Evan Moffic is inspired by his own experiences in delivering eulogies and comforting mourners. "Nothing can totally prepare you for the task of comforting mourners and making sense of death. And nothing better teaches us what makes for a meaningful and well-lived life." He quotes "a saying of the Jewish sages: 'The Righteous, even when they die, are called living.' In other words, the righteous live on in the inspiration and loved ones they leave behind."

Wednesday, July 1, 2015

Author Samuel G. Freedman Is Creating a Project to Preserve the Work of his Friend Jeff Schmalz, a Trailblazing Reporter Who Covered AIDS – Tablet Magazine

Author Samuel G. Freedman Is Creating a Project to Preserve the Work of his Jeff Schmalz, a Trailblazing Reporter Who Covered AIDS – Tablet Magazine
In 1990, Schmalz stood up at his desk, then collapsed. Though up until that moment he’d felt fine, he learned that he had a brain infection caused by AIDS. And he was outed. Not only did he have to process the fact that he had the disease, but also symptoms that often killed people within four months. Schmalz nonetheless went back to work. He covered the 1992 presidential campaign. Then he asked if he could cover AIDS. It was an unheard-of thing: A reporter creating his own beat and convincing his bosses to let him cover it despite his having the disease himself. But Schmalz had proved himself a brilliant reporter, and top brass trusted his ability to do his job. He spent the last 18 months of his life doing groundbreaking reporting (and beautiful writing) on the epidemic, while helping to change the culture of the newsroom. He died in 1993, at 39.