Tag: Conscious Dying

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Oregon couple’s final days captured in intimate aid-in-dying video

A lethal prescription under Oregon’s Death with Dignity law.

[O]n the last morning of their lives, Charlie and Francie Emerick held hands.

The Portland couple, married for 66 years and both terminally ill, died together in their bed on April 20, 2017, after taking lethal doses of medication obtained under the state’s Death With Dignity law.

Francie, 88, went first, within 15 minutes, a testament to the state of her badly weakened heart. Charlie, 87, a respected ear, nose and throat physician, died an hour later, ending a long struggle that included prostate cancer and Parkinson’s disease diagnosed in 2012.

“They had no regrets, no unfinished business,” said Sher Safran, 62, one of the pair’s three grown daughters. “It felt like their time, and it meant so much to know they were together.”

In the two decades since Oregon became the first state to legalize medical aid-in-dying, more than 1,300 people have died there after obtaining lethal prescriptions. The Emericks were among 143 people to do so in 2017, and they appear to be the only couple to ever take the drugs together, at the same time, officials said.

The pair, early members of the 1980s-era Hemlock Society, had supported the choice for years, and, when their illnesses worsened, they were grateful to have the option for themselves, family members said.

“This had always been their intention,” said daughter Jerilyn Marler, 66, who was the couple’s primary caretaker in recent years. “If there was a way they could manage their own deaths, they would do it.”

Before they died, the Emericks agreed to allow Safran and her husband, Rob Safran, 62, founders of the Share Wisdom TV Network, of Kirkland, Wash., to record their final days and hours. At first, the video was intended just for family, but then Safran asked her parents for permission to share it publicly.

“I think it can help change the way people think about dying,” she said.

The result is “Living & Dying: A Love Story,” a 45-minute documentary that details the background of the Emericks’ final decision and their resolve in carrying it out.

Shot mostly with handheld smartphones, the video captures the intimate moments of the couple’s preparations in their last week of life.

Charlie Emerick was a former medical missionary in India and chief of ENT at a Portland-area Kaiser Permanente hospital. (Kaiser Health News is not affiliated with Kaiser Permanente.) He was diagnosed with Parkinson’s disease in 2012, after dealing with symptoms of the disease for years. He suffered from prostate cancer and heart problems and learned in early 2017 that he had six months or less to live. In the documentary, he described his thoughts as he pondered whether to use aid-in-dying.  

“You keep going, Charlie, you’re going to get worse and worse and worse,” he explained to Sher Safran, in a quavering voice. “The other can’t be worse than this.”

Francie Emerick, who handled marketing and public relations for the hospital in India, appears vital and articulate in the video. Her daughters, however, say that her energy was fleeting and that it masked years of decline following multiple heart attacks and cancer.

In the video, Francie acknowledged that she could have survived a bit longer than her husband. But, she said, she didn’t want to.

“Charlie and I have a rather unique relationship in that we have done and been so much to each other for 70 years,” she said.

The pair carefully followed the specifics of the law, which requires examinations by two different doctors to determine a prognosis of six months or less to live, multiple confirmations of intent and the ability of patients to ingest the lethal drugs themselves. The process takes a minimum of 15 days.

“We do want it to be legal,” Francie said.

The video traces the arc of the couple’s lives. The Emericks met as college students in Nebraska, married on April 4, 1951, and spent years in the 1960s as medical missionaries in Miraj, India. Dr. Emerick’s career took them to Southern California and then to Washington state, to India and ultimately to Oregon, all while raising three girls. In 2004, they moved into an apartment in a retirement community in Portland.

That’s where the Emericks died on a cloudy Thursday last spring, six days after a family celebration that included their children and grandchildren — and, at Francie’s request, root beer floats. The gathering was happy, but bittersweet, family members said.

“There were moments that they expressed great sadness at the goodbye that was coming,” Marler recalled.

The Emericks sought help from Linda Jensen, a veteran team leader with End of Life Choices Oregon, a nonprofit agency that supports people seeking to use the state’s Death With Dignity law.

“They were pretty well informed,” said Jensen, who has assisted with dozens of deaths in 13 years. “What they wanted to understand was what a planned death really looks like.”

The video includes a meeting between Jensen and the Emericks two days before they died. It would be nothing like dying on TV, she told them.

“You do not lose control of your bowel or bladder. You do not gasp for breath,” she explained. Instead, she said, they would simply go to sleep.

The Emericks went over the plan: no breakfast, just pills to calm their stomachs at 9 a.m., followed by the lethal drugs an hour later.

Safran and Marler appear calm and determined as they help finalize their parents’ arrangements.

“There was a lot of grieving ahead of time because we knew it was coming,” Marler said.

Some members of the family disagreed with the couple’s decision, but the Emericks were determined.

“You two have never wavered?” Safran asked her mom.

“We have not,” Francie replied.

The video captured details of the final morning: Charlie saluting the camera farewell as he’s wheeled down the hall, Safran’s tearful last hug from her mother, Charlie and Francie clasping hands after they swallow the drugs.

“It just takes such a huge amount of internal strength and self-knowing to face that choice, to make that choice and then bring along all the people that love you and are going to miss you,” Jensen said.

There was no funeral after the deaths. The Emericks had donated their bodies for research through a program at the Oregon Health & Science University and any remains wouldn’t typically be returned for two or three years, a spokeswoman said.

In the interim, the video has become comforting and precious to the family, said Safran.

“It’s very lovely, just to hear their voices,” she said.

The documentary also serves a larger purpose: helping others to understand how aid-in-dying works, she said.

Carol Knowles, 70, was a member of Francie Emerick’s book club. The Emericks didn’t tell other residents about their plans. Knowles said she was surprised when they died the same day — until she saw the documentary.

“I thought it was brave and beautiful,” she said. “You could see the care with which Charlie and Francie had made that decision.”

Another member of the group expressed concern, however, saying her religion prohibited any efforts to hasten death. Knowles said she plans to take the documentary to the retirement center’s social worker before showing it more widely.

“We want to do it in a way that will not scare them or make them feel uncomfortable,” she said.

Stephen Drake, research analyst for the disability rights group Not Dead Yet, had serious reservations about making the video public. He worried that presenting aid-in-dying in a positive light “changes the expectations; this romanticizes the idea of not just suicide, but a double suicide,” Drake said.

Safran said she expects strong reactions — including criticism — for chronicling her parents’ final days. But she said the documentary honors the Emericks’ belief that, if possible, everyone should have a say in when and how they die.

“We have a faith that says life is not to be worshipped,” Francie said. “It’s the quality of life that counts.”

Complete Article ↪HERE↩!

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Living like I’m dying

I’m leaning into death to see if I can change how I feel about it.

By Laurie Brown

[I] imagine I’m not the only person who’s written their own obituary, but maybe I’m the first one to see it in print. Writing my obit was the first task in an exercise that came to an end yesterday.

“Brown, Laurie Jane. (October 7, 1957 – March 4, 2018). Laurie died suddenly yesterday in Toronto at age 60.”

I feel like Scrooge seeing his own gravestone.

I am in perfect health, but having recently turned 60 years old, I am feeling an increasing urgency about, well, everything. Why not give myself the deadline to end all deadlines? On Dec. 4, 2017, I decided I had three months to live. Three months to make more of whatever time I have left.

So for the past three months I have been thinking about death everyday. “Is this the last time I hand wash this sweater? Is this the last time I talk with my son?” It was jarring, but I kept going. I wanted to get to a less anxious feeling about my own mortality. By trying to live as if I was dying, would I live each day differently? Might that take some of the sting out of my impending death? Is that even possible?

The first thing anyone with three months to live is told to do is “get your affairs in order.” I updated my will and my living will. Next, I collected all my banking and legal information and printed it. (Kids – it’s in a bankers box on the floor of my closet, along with the full obituary.)

I started my death exercise without telling anyone. Good thing – I could have ruined a few dinner parties. I did let one girlfriend in on it and her response was “March is still too cold to stand by your grave. Can you make it May?”

With two months left on the calendar, I flipped between two very different states of mind. On a good day? I believe I’ve had a full life, a lucky life and I’m good to go right now. But on a bad day, it’s a different story: I want to be a grandmother, I want to create more, I want to grow old. My children need me and my new partner needs me. I couldn’t bear to contemplate the end of a love I had barely begun.

I never used to think about death until my mother died at 58 of ovarian cancer. I was terrified that would happen to me. Now, I scroll through my Facebook feed reading chemo updates and news of departed friends. I feel like death is hunting me and my senses are working overtime to hear the approach. I don’t want to live in fear – so I’m leaning into death to see if I can change that.

Each morning, I opened my eyes and thought of the day in front of me. I paid attention to the morning light through my window, the luxurious feel of my bed sheets, the realization that I had no pain, and I felt great. My feet hit the floor and I jumped into my day joyously. My mantra became ‘say yes until it breaks you.’ I was sounding like an inspirational poster, with kittens. And yet, I didn’t feel as if I was truly living each day like it was my last.

Too embarrassed to talk to people about what I was up to, I turned to books. Die Wise by Stephen Jenkinson struck a huge nerve.

Stephen has been witnessing death for decades, both as head of a palliative-care unit in Toronto and as a “grief whisperer,” helping the dying and their families navigate death. Stephen has no 10-step plan to a wise death but talking about it with him on Pondercast, my podcast, was such a relief.

When my mother lay sick and dying, I felt frozen and mute, and she was keeping what she felt to herself. Probably because I didn’t ask. I have terrible regret about that. I know I’m not alone in these feelings after a parent dies.

We live in a death-phobic culture. We don’t acknowledge dying people, we keep turning the conversation in the other direction, toward life and “keeping up the fight.” We institutionalize our terminally ill and our aged and we outsource the task of dealing with our dead. Illness and death are kept as far from the living as possible – it’s no wonder we are at a loss to find anyone to talk about it with.

In the same way that women have fought to take back the birth experience – bringing it home, surrounding birth with family and siblings, making it a human experience instead of a medical one – might we do the same thing with death?

I began to question my motives in taking on this three-month death exercise. It became clear that I was anxious to learn how to handle death. I wanted to bring order to the chaos of feelings I had. I thought I could learn to embrace death just enough to think I had it pegged.

My experiment is a pale shadow to the real thing. It doesn’t compare to the anxiety and fear felt by those who are truly ill. Nor what I once felt waiting for a biopsy report.

I can’t embrace death, death will embrace me. It will have its way with me. It will be messy and confusing. Death will ask everything of me. Will I be able to accept that? Is it too much to ask that that I might I leave my life loving it?

Perhaps the strangest outcome of this morbid exercise is realizing I have a moral obligation in my final days. Dying will be my last and perhaps most important act of parenting. I need to show my children how it’s done. That death carries with it a responsibility is helpful to me, it gives my death some purpose.

I have started awkward and halting conversations about death with my father, and have asked him to let me in. I want him to share his coming death with me. It will help me when my time comes.

Keeping death in the forefront of my mind is informing everything I’m doing. It’s a funny liminal place to be – but the balance of it feels right.

Laurie Brown lives in Toronto.

Complete Article ↪HERE↩!

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My mother’s peaceful death

The author’s parents enjoying their retirement in New Zealand, 1991.

By Jane Peterson

[M]y mother’s last words were “It’s not working.” She slurred them before she fell into a deep sleep. Just prior to that, after ingesting medication mixed with applesauce, she had placed a plastic bag over her head and secured it. According to her meticulous research, this would hasten her passing.

Her death had been planned for months, if not years. Both my parents were members of The Voluntary Euthanasia Society in New Zealand, where they had retired from England to be close to my eldest sister and her children. Even though I had married an American and moved to rural Colorado, I was fortunate enough to be able to visit them every year and stay maybe two or three months.

Contemplating end of life

Our end-of-life discussions had been ongoing for many years, and both my parents were determined to die with dignity at a time of their choosing and before any needless and expensive medical procedures. Their wish was to pass away at home, as peacefully and as inexpensively as possible. As a family we agreed, with no hesitation. Now I pray that my sister and I can end our lives, legally, with the help of an enlightened physician, when quality of life is no longer an option.

My parents generally were in good health until my mother was diagnosed with rheumatoid arthritis at 82. This horrible disease was rampant on her side of the family—her beloved sister became ill in her 20s. She suffered mightily, without today’s wonder drugs that can alleviate some of the unpleasant symptoms, and died in her early 50s.

My mother had obtained a supply of Seconal from her doctor in London and had guarded her “stash,” with a mind to her eventual death. Despite the capsules being several years old, Mother did valuable research, including obtaining a prescription for anti-nausea pills, as well as taking six 10-mg Valium, with a glass of wine, before ingesting the lethal dose of Seconal. She had written separate goodbye notes to my father and to my sister and me. This was necessary to exonerate her family members in aiding and abetting her demise.

The final weeks of her life were filled with joy and laughter, and the planning took on a military aspect that my father, a lieutenant colonel in India during World War II, reluctantly took part in. I can honestly say that we had never laughed so much, despite the looming event that was ever present.

My mother’s pain was becoming increasingly unbearable and even sitting up in bed caused her appalling agony. The family doctor (they still made house calls in New Zealand) had given her Prednisone and Methotrexate. However, throughout her life, my mother had been unable to tolerate strong medications and she was terrified that the Prednisone was making her blind. The Methotrexate, on the other hand, messed with her mind. To our horror, a few weeks before, we found her lying outside in the driveway, in the pouring rain at 3 a.m., crying softly for help.

Goodness knows how long she had been there, and thank God I needed to use the bathroom in the middle of the night. When I checked her room and she was not in bed, I alerted my father. She was taken by ambulance to the nearest hospital and she remained there to be stabilized for a week.

Dying with dignity

Trying to keep on an even keel the morning of her death, I heard her speaking with my father who was asking her (again) if this was what she really wanted. I was cleaning up in the kitchen, and I am not ashamed to say that I lost it. I was privileged to have exceptional doctors in America and was prescribed suitable medication to help me through difficult times. This was definitely one of those occasions and I make apologies to no one.

Darling, darling Mother! So adamant that she could leave my sister and me as much money as she was able. She needed relief from her torture and, thanks to a long relationship with her family doctor in England, she was able to obtain it, in her own bed, surrounded by loving family. My sister and I monitored her pulse. It became weaker and weaker, until it was apparent that she had passed. The whole process took less than one hour.

It remains the most spiritual experience of my life, and I was similarly affected when my father died at home, just over a year later. Desolate after my mother’s death, he lost the will to live and had even asked my sister about getting a gun.

He passed away a week after being placed in a morphine-induced coma by his physician, so there was no verbal contact in his last days. Although he did not have to resort to my mother’s method, he succumbed to an illness that had no name since any diagnosis, advice or procedures that might have prolonged his life were adamantly refused. I suspect it was pancreatic cancer that prevailed.

He died around 11 a.m. on September 1, 1996, with me by his side, holding his hand and professing my love.

The right to make our own choices

As before, with my mother’s death, the funeral director who came to the house was incredibly disappointed when my sister and I firmly rejected his top of the line caskets. My parents always said that they wished to be cremated in matchboxes, a standing joke in our family for many years.

I give thanks every day for my parents’ decisions. My friends are coping with family members suffering from Alzheimer’s, dementia and worse. Their loved ones die in hospitals and nursing homes, lives needlessly prolonged. It results in loss of dignity, immeasurable suffering and devastating financial consequences.

I am so encouraged that more states have passed laws enabling physician-assisted dying (end-of-life options). To those of a similar persuasion, I urge you to become members of Compassion and Choices, based in Denver and available at 800-247-7421 or www.CompassionAndChoices.org. This progressive organization endorses Death With Dignity, and was instrumental in the Colorado voters passing the End-of-Life Options Act, now legalizing medical aid in dying. They continue their efforts in all states.

We should all be so fortunate to have the legal right to pass as we wish, and I say no state or federal agencies have any right to dictate how we make personal medical decisions.

Complete Article ↪HERE↩!

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How to Prepare, Just in Case You Die Young

Nobody wants to imagine it. But you can disaster-proof your affairs with this checklist.

Insurance, wills, the POA (power of attorney)—they all matter in making things more manageable for survivors.

By Chana R. Schoenberger

[F]ew estate plans consider the possibility of an early death. That is a potentially disastrous mistake, experts say.

By the time you’re in your 40s, you likely know someone, or know of someone, who has died young. That is why it is important for people to draw up plans as soon as possible, including accounting for what will happen should death occur in middle age, with children still at home.

We spoke with estate-planning lawyers to ask what end-of-life documents and estate plans a 30- or 40-something would need to assemble (aside from tax-planning help, for which an accountant or tax lawyer should be enlisted). All recommended getting started right away with this checklist:

INSURANCE

Life insurance can be expensive, but it ensures that if a spouse should die young, his or her partner can stop working or downshift careers to take care of the children. People often buy life insurance for themselves when their children are born, so the surviving spouse won’t have to worry about having money for tuition or the costs of raising children as a single parent.

“It’s best if you can buy guaranteed renewable term insurance when you’re still insurable and have no underwriting risks, while you’re still relatively young and before you have any diagnoses,” says Joe McDonald, an estate-planning lawyer at McDonald & Kanyuk in Concord, N.H.

It’s also advisable to buy long-term-care insurance, though it is becoming more expensive as policyholders live longer. Many employers also offer disability insurance to replace a certain percentage of salary if the employee becomes incapacitated, says Joshua Kaplan, an estate-planning lawyer at the law firm Dechert in New York.

WILL

Everyone needs a will. Without one, depending on the state of residence, it could take weeks or months for an estate to make its way through probate court until a judge appoints an executor to wind down the deceased’s financial affairs. During that time, heirs may not be able to access the money left to them or even write checks to pay their bills.

Often state rules say that every person named in a will as the recipient of property needs to receive written notice that the will is in probate.

“It’s often simpler to leave everything to one person or a class of person, like your children, and then have them distribute,” says Mr. Kaplan. His grandmother did this, leaving everything equally to his aunt and father, with a letter explaining which relatives should also get certain items.

Once the will has been made and signed properly, where should it be kept? Somewhere safe, where the family can find it, such as with a lawyer. But be sure to tell someone in the family where it is.

“Don’t leave it in your safe-deposit box unless someone is the second signer, or you won’t be able to get to it,” says Sharon Bilar, an estate lawyer who has a practice in New York.

BENEFICIARIES

When you set up a bank account or any financial account, you’re typically asked to name a beneficiary to inherit it if you die. Such an account will pass directly to that person without going through probate, so make sure your beneficiary designations are up-to-date. You may have designated your siblings when you started working and set up your 401(k), for instance, but now you’re married and want to designate your spouse.

You also need a secondary beneficiary, in case something happens to your first choice (suppose, for example, that you and your spouse are in a car crash together). A trust can be a beneficiary as well. If there isn’t a space on account-opening forms for a secondary beneficiary, call the financial institution and request to add this person.

Generally, your children will be your secondary beneficiaries, after your spouse. Be careful of designating as secondary beneficiary an adult whom you would like to take care of your children, Ms. Bilar says.

“If you make anyone the beneficiary who’s not your child, that money legally belongs to the beneficiary, and you cannot force that person to spend the money on your child,” she says.

POWERS OF ATTORNEY and PROXIES

“If you’re worried about passing suddenly or becoming suddenly incapacitated, the legal documents you should have are some sort of health-care advance directive and a living will,” Mr. Kaplan says. A health-care proxy appoints one person, older than age 18, to act on your behalf when making medical decisions. If you don’t have this document signed and something happens to you, your spouse will have the right to make these decisions for you, followed by your adult children and your parents. Make sure to designate a first- and second-choice person to be your proxy, Mr. Kaplan says.

You’ll also want to sign a living will, which lays out your intentions for end-of-life care, such as when to withhold treatment if doctors determine you’re not going to recover, and whether you wish to be an organ donor. This is important if you are in an accident or otherwise become incapacitated. Because wishes often are driven by religious and other personal moral concerns, it is important for couples to discuss their own preferences, Mr. Kaplan says.

GUARDIANSHIP

When there are children under 18, the most important step in estate planning is to decide who should raise them if both spouses are gone. This preference goes into your will, where a judge will almost always honor it when deciding whom to appoint as guardian. If you don’t have this designation in writing, you’re leaving it up to the court to decide who will take care of your children. “It’s best if spouses both name the same people in the same order” when they choose a guardian for minor children, Mr. Kaplan says.

The guardian you select for your child doesn’t have to be the trustee of any trust you set up for your child—although it is easier if they agree on how to spend the money to benefit the child.

“Some people want the trustee to put the brakes on the guardian spending money for the child, to act as a check and balance,” says Mindy Stern, an estate lawyer at Schwartz Sladkus Reich Greenberg Atlas in New York.

Every additional piece of information survivors have about the deceased’s affairs can make the hours and days after a person dies easier. Survivors should have access to a file that contains insurance information; a list of all your bank and financial-institution accounts, “529” college-savings accounts and retirement accounts, with beneficiary information; a list of all your credit cards, as well as any household expenses that are set on auto-pay; and details on where to find the deed to the house and the cemetery plot, plus the key to the safe-deposit box.

Also keep a list of online accounts and their passwords, as well as information on airline frequent-flier miles, and the credentials to any cryptocurrency wallets you hold, Ms. Bilar says.

Complete Article ↪HERE↩!

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A Better Way for Families to Care for Dying People

Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care

[A]lthough 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.

The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.

To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.

Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.

How can palliative care and hospice improve the quality of life for the terminally ill and their families?

Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.

Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.

How can family members help a terminally ill person continue to live a full life with a chronic illness?

People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.

Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.

Can pain be controlled when you have a terminal illness?

Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.

How can caregivers and family members combat “compassion fatigue?”

Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.

Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.

Complete Article ↪HERE↩!

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How to comfort dying and bereaved people? ‘Be there.’

Often we struggle with finding the “right” words to comfort someone who is dying or who has lost a loved one but experts say all you really need to say is, “I’m sorry,” that being there for the individual already speaks volumes.

By Donna Vickroy

[S]he seemed asleep in the quiet, softly lit room in the hospice section of Advocate Christ Medical Center in Oak Lawn.

Her face was soft, relaxed, almost peaceful. Her breathing was steady. I didn’t know if she could hear me, but I struggled with what to say anyway.

The visit with my mother’s best friend, who lie dying, immediately took me back to the days before my mother’s death five years earlier, when the “right” words just wouldn’t seem to come, even though I had so many hours to formulate them.

Of all the phrases in the universe, the ones that we need in times of grief are often the most elusive.

What do you say to someone who is dying?

And what do you say afterward to those devastated by a loss?

How to navigate grief, whether it’s our own or that of someone close to us, seems a great mystery even to people whose college major was communication.

So this column will attempt to shed some light, to offer some advice and to serve as a virtual hug to those in need.

Because at some point in our lives all of us will be there, facing death, whether its our own or that of someone we love.

Joseph Masbaum has been bereavement coordinator for Advocate Hospice South for 13 years. He has comforted thousands of people as they were dying or through the grief process.

A person’s final moments, he said, are a good time to review. “Encourage them to feel good about their life.”

Regardless of how rich or exciting a person’s life may have been, Masbaum said, “When someone is dying, what’s most important to them is relationships. So talk about the people in their lives. Remind them that their family loves them. Just be reaffirming.”

It’s also important to not fear silence, he said.

While many people on their deathbed desperately want to be comforted by loved ones, some “don’t want to talk about it, some are bitter, some are in denial, some are avoiding it,” he said. Often, it can be hard to know what to say.

In those cases, he said, “I ask them what the doctor has told them about their situation. It gives you a start to know where they are.

“Ask them if they’re comfortable talking about themselves, about their life, their family,” he added.

“Some people avoid the dying because they’re afraid and don’t know what to say. So many of us are uncomfortable with silence — we fill it up with words,” he said. But when you know somebody is dying and are at a loss for words, he added, “Just be silent or say, ‘I don’t know what to say but I’m here because I care.'”

Steve Hoerger, pastor of Salem United Church of Christ in Oak Lawn, is a hospice chaplain. He said finding the right words can sometimes be tough “even for me who deals with terminal people daily.

“I think you let them take the lead and then be comfortable with wherever they go so they know they can open up,” he said.

“I rarely ask direct questions about how they’re handling the dying process. I ask questions about their life and then about their diagnosis and how it’s affecting them. This gives them the opportunity to say more about what they’re struggling with, or not. I’m comfortable with either,” Hoerger said.

Sometimes, he said, conversation can be shocking, but he remains nonjudgmental.

After the loss

Masbaum said, following the death of a loved one, it is common and normal to feel a multitude of emotions: shock, numbness, guilt, regret, sadness, anger.

It is most important, he added, to understand “there is nothing wrong with you” for feeling these emotions.

“So be careful to be very kind to yourself and avoid any negative self-talk,” he said.

Instead, “tell yourself, ‘I am doing the best I can. There’s nothing wrong with me, It’s the grief,'” he said.

Masbaum said when he calls to check on people following the death of a loved one, “They often tell me they feel lost, they feel empty, because their whole life has changed, especially if that person was one of their go-to people — someone they lived with, loved, saw everyday.”

Masbaum recalled a 12-year-old girl who was devastated by the loss of her grandfather because he was someone who really listened to her, someone who had been a key person in her life.

He recalled phoning one woman whose mother had died. “It was 1 in the afternoon or so. She said, ‘I’m in this chair all morning. Right now, I’m still in this chair. I just have no energy.’ So I normalized her feelings. I told her it’s normal to have fatigue and no energy,” he said.

“I only talked to her for about a minute but two hours later I was thinking of her and I called her back. This time, she was excited. She said, ‘I just came in from the yard. I was working in the garden for an hour.’ Prior to that, she was sitting in the chair, admonishing herself for being lazy. But when I told her that was the grief, and that it is normal, it really helped her,” he said.

Masbaum said he encourages people to talk about their loved ones, their feelings and about themselves.

“A lot of times we want people to be fixed — we think they should be getting over their sorrow — but (humans) need to process feelings,” he said. “Each person is unique in their grief and in how long it will take to adjust. Grief is a process that cannot be rushed. There is great wisdom in focusing and coping one day at a time as best you can.”

He also encourages those who are grieving to spend time with people who understand their grief, such as a support group or counselor or another person who also has experienced loss.

“Journaling your feelings is most helpful for many. Some bereaved who journal find it comforting to write a letter to their loved one each evening,” Masbaum said.

He also encourages people to talk with their deceased loved one.

“Some people may say ‘you’re crazy’ for doing that but for 13 years, of the thousands of people I’ve talked to, I’ve only met about four people who never talk to their deceased loved one,” he said. Just saying, “I love you, Mom, I miss you” can be cathartic, he said.

“There’s a gentleman I met in Oak lawn. He told me a story about missing his wife. In the end when he got up to go, I asked him if he ever talked to his wife. He stumbled and said, ‘Maybe a little, I just don’t know how I feel about that.’ I told him what I tell almost all the people I counsel, that it’s an individual thing but that it’s very common, very normal,” Masbaum recalled.

“The next week he came in, I asked how he was doing. He said, ‘I’m doing much better since you told me I can talk to my wife. I talk to her in the garden where we used to work together,'” he said.

Many people, Masbaum said, keep “transitional objects” such as jewelry or items that belonged to a loved one. Many wear a piece of their loved one’s clothing, such as their sweatshirt or jacket, to help them feel a connection.

Also, he said, maintaining a daily routine with some movement or exercise is especially important for those who are grieving, even if it is just a daily walk around the block.

The rituals of death

Peggy Schaffer and Brian Fitzpatrick, funeral directors at Brady-Gill Funeral Home and Cremation Services in Tinley Park, have had funeral attendees reveal that they don’t know what to say at a visitation or interment, particularly if the deceased was taken tragically or is a child.

“The best thing to say is, ‘I’m sorry’,” Schaffer said. “Don’t say, ‘It’s good you have other children’ or ‘You’re young enough to have more.'”

If words escape you, she said, remember actions often speak louder.

“It means more to someone (who is grieving) that you walked in, acknowledging that their mother, father, brother, sister, child lived and touched their lives. You don’t have to say anything,” Schaffer said. “The fact that you took time out of your day to be there says it all.”

Sometimes, she added, a meal a week or so after the funeral reminds the loved one that they haven’t been forgotten.

“Pick up the phone and share a memory,” she said. “It doesn’t have to be a long conversation.”

When it comes to attending wakes and funerals, Fitzpatrick said, there are no “rules” about how long to stay or what to bring.

People still send flowers, Schaffer added, but over the last 25 years, services have become shorter, more streamlined, often with both visitation and funeral service on the same day, and the “gift” of Catholic Mass cards, signifying a future Mass will be said on behalf of the deceased, has dropped off considerably.

“We’re seeing a lot more cremation, with a memorial that includes the urn and lots of pictures,” she said. “More people see the urn as not as traumatic as the (deceased’s) body.”

Picture boards and videos can be conversation starters for those who struggle with what to say, she said.

Schaffer suggested letting a sympathy card or a message left on the deceased’s page on the funeral home’s website do the talking if you cannot.

“Don’t fumble over words,” she said. “If you can’t think of what to say, a hug or a touch will do.”

Finding my words

Standing at the bedside of my mother’s best friend, I decided to say what I would want to hear if the tables were turned.

I told her that we loved her. I thanked her for being a good person in our lives, for being helpful and kind and funny and constant. I thanked her for all of the rides she’d given me to work and school when I was a kid. I thanked her for letting my siblings and me have sleepovers at her house and for coming to my college graduation and for all the times she made us laugh and all the times she brought the best kolachkes in the world to my family parties.

I thanked her for believing in my dreams as a child and for being the biggest fan of my column when I became an adult, even if she did joke that it was only “to keep her nose in all of my business.”

I hugged her, kissed her forehead, rubbed her arm, held her hand and then I thanked her for being a good friend to my mother because that made her a good friend to us.

Although she moved her mouth and raised her eyebrows several times, I’m not sure if she heard or understood. Because I will never know that she didn’t, I am choosing to believe that she did.

Complete Article ↪HERE↩!

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Black people must command end-of-life care

By Brandi Alexander

[A]s we celebrate Black History Month, one of our goals should be to change the history of African-Americans like my father enduring needless suffering when we die because we don’t prepare for the inevitable end of life.

When my father’s cancer came out of remission in 2010, he declined in a matter of months. I had never had one conversation with him about his end-of-life care goals, preferences and values, so he suffered terribly during his last days. My family spent so much time fighting over what we thought he wanted, when in reality, none of us knew what he really wanted. That experience taught me not only the importance of these discussions, but also how much of a need there is for us to start planning early, before a time of crisis.

Unfortunately, African-Americans are less likely to complete advance directives or have conversations with our families and health care providers about our their end-of-life care goals, preference and values, according to a 2014 report in the American Journal of Preventive Medicine. It is critical that our community begin focusing on advance care planning about the end-of-life care options, including educating ourselves about the value of hospice and palliative care.

The sad truth is that we suffer from higher rates of health care outcome disparities caused by smoking, obesity, hypertension, heart disease and cancer. By not having frequent conversations about end-of-life care options early, to prepare before a health emergency occurs, people of color often opt for aggressive, futile medical treatments that only prolong an agonizing dying process. African Americans are less likely to access comfort care, hospice and palliative care to maximize the quality of remaining life.

In fact, while representing more than 13 percent of our nation’s population, according to U.S. Census data, we account for only 8 percent of hospice users.

Unlike many of the other disparities that impact the community, this is one we actually have some control over. It starts with having a conversation. Unfortunately too many of us are not having discussions. In fact, 20 percent of African-Americans have not talked to anyone about end-of-life care, according to research conducted by the Duke Divinity School and the National Hospice and Palliative Care Organization.

Every individual has a responsibility to lead by example on health care issues, so I challenge you to start having conversations today, with your personal networks and your health care professionals. Complete an advanced directive and identify your power of attorney, the person who will make decisions for you in the case that you can not speak for yourself. The most loving thing you can do is to make your wishes known to your loved ones, it provides peace for all involved.

Tomorrow is not promised, so whether you want every treatment option available or none at all, it’s imperative to make sure it is clear to those who matter to you the most. Start this process by visiting Compassion & Choices website page, compassionandchoices.org/plan-your-care, where one can access state-specific advance directives and find other resources and tools to help, free of charge.

We even offer a diagnosis decoder that generates questions for physicians specific to a particular illness. Educating and utilizing these resources will not only empower you, it will also have a positive and lasting impact on our community as a whole and the way we experience end of life. Remember … talking about death will not kill you … advocate for yourself!

Complete Article ↪HERE↩!