National Wear Red Day® on Friday, February 2, 2018

Support Go Red For Women by participating in National Wear Red Day® on Friday, February 2, 2018. 

Why Go Red? Cardiovascular disease in the U.S. kill approximately one woman every 80 seconds. The good news is that 80 percent of cardiac events may be prevented with education and lifestyle changes. Go Red For Women advocates for more research and swifter action for women’s heart health. That’s why this year we are asking that you wear red on National Wear Red Day.® 

Go Red For Women is a movement that starts with you. Lead by example and make the time to “Know Your Numbers.” It’s knowledge that could save your life.  Five numbers, that all women should know to take control of their heart health are: Total Cholesterol, HDL (good) Cholesterol, Blood Pressure, Blood Sugar and Body Mass Index (BMI). Knowing these numbers can help women and their healthcare provider determine their risk for developing cardiovascular diseases. It’s time for all women to learn the most critical numbers in their life — their hearts depend on it.

Levine elected to role of vice president of NJSNA

The New Jersey State Nurses Association welcomed a new vice president and secretary to its Board of Directors at a swearing in ceremony this weekend.

Mary Ellen Levine, a Hopatcong resident, was elected to the role of vice president. She serves as a hospice nurse Karen Ann Quinlan Hospice in Sparta and an adjunct professor at Caldwell University.

“It is my goal to promote organization membership and professional involvement with regards to the direction of nursing practice and health care policy,” said Levine. “I look forward to serving during this exciting time and having an impact on all New Jersey nurses, the practice of nursing and patient care.”

NJSNA, which was established in 1901, is a constituent member of the American Nurses Association. The New Jersey State Nurses Association (NJSNA) represents the interests of 125,000 registered nurses and advanced practice nurses as an advocate for the nursing profession. NJSNA’s lobbying arm continues to protect the nursing profession through legislative victories. Its nonprofit foundation, Institute for Nursing, helps nurses further their careers by providing continuing education, scholarships and research grants in addition to invaluable networking opportunities. For more information, nurses can visit njsna.org or contact NJSNA at njsna@njsna.org or (609) 883-5335.

The Long Goodbye

The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies

For years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.

Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.

This pileup of complex emotions is known as “anticipatory loss.” “The deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn’t built into the health care system,” said Dr. John Rolland, professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Families, Illness and Disability: An Integrative Treatment Model.”

Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:

Acknowledge Your Feelings

“Grief starts the moment someone with a serious illness receives the diagnosis,” said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn’t stop there. Each time a capacity is lost — for instance, an older adult’s ability to negotiate stairs, to drive or to manage household finances — sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to “normalize them, because people don’t understand that everyone goes through this.”

Talk Openly

When families avoid talking about an aging parent’s frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.

“My view is, you’re better off trying to get through whatever you’re facing together,” Rolland said.

When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they’d like to discuss but don’t. “Usually, there’s about a 75 percent overlap, and it’s a tremendous relief to most people to find out they don’t have to keep things locked up inside,” he said.

“People who are facing serious illness think about what might lie ahead all the time,” Rolland said. “For a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn’t helpful.”

Communicate Sensitively

Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.

“People with these conditions aren’t the same as they were before, but it would be heartbreaking for them to know that you didn’t see them as the same person,” she said. “So, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.”

In her practice, Marks asks “people to share what each person is going through and not worry about protecting each other from what they’re feeling,” she explained. “Because protecting each other leads to feeling more alone and magnifies the feelings of loss.”

For a caregiver of someone with dementia, that might mean saying,“Sometimes you might see a look crossing my face and think that I’m disappointed. It’s not that I’m upset with you. It’s that I’m sad that there are things that happened in our past that we don’t remember together.”

For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who’s disabled.

Lean In

How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who’s frail or ill, and the nature of that person’s condition.

“Sadness can make you cherish a person even more and appreciate small moments of connection,” said Barry Jacobs, a Pennsylvania psychologist and co-author of “AARP Meditations for Caregivers.”

Some people, however, can’t tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.

If possible, lean in rather than letting yourself become distant. “Cherish the time that you have together,” Jacobs said. “Rather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.” In the end, connection eases the pain of grief, and you’ll be glad you had this time with the person.

Seek Support

“Don’t confront grief alone or in isolation,” said Alan Wolfelt, founder and director of the Center for Loss & Life Transition in Fort Collins, Colo. “Have people around you who are supportive and who will be present for you” — family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.

Ultimately, this journey will help shape how you ultimately experience a loved one’s death.

Wolfelt describes mourning his mother twice. “The day she was diagnosed with Alzheimer’s and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.”

But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family’s decision not to pursue further treatment. “It was OK that she died because she was ready — she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Blue Knights ride for Hospice

On January 1, 2018, members of the Blue Knights Chapter IX motorcycle club rang in the new year by riding out in the annual Chilly Chili Run to benefit Karen Ann Quinlan Hospice.

Last year the Blue Knights donated more than $11,000 to the Hospice from the 2017 run. The donation was used to provide medical, emotional and spiritual support to people facing terminal illness. Karen Ann Quinlan Hospice make certain that their remaining days can be lived as fully as possible.

We would like to thank the Knights for helping us maintain this mission.

#SoonerIsBetter – Don’t wait to talk about hospice

It’s an all too common situation. A family is at the bedside of a loved one who is seriously ill and nearing the end of life. Each member of the family has a different idea of what should be done and what the patient would have wanted.

Far too many people wait until they are in the midst of a health care crisis before thinking about what options are available or what care they or their loved ones would have wanted.

Often, by waiting too long to learn about possible options, like hospice care, people end up spending difficult days in the hospital or the emergency room and opportunities to be with loved ones at home are lost.

When a family is coping with a serious illness and a cure is no longer possible, hospice provides the type of care most people say they want at the end of life: comfort and dignity. Considered to be the model for high-quality, compassionate care for people with a life-limiting illness, hospice care includes expert medical care, pain management, and emotional and spiritual support. Care is provided by an inter-disciplinary team of professionals and trained volunteers. The wishes of the patient and family are always at the center of care.

Most hospice care is provided in the home – where the majority of Americans have said they would want to be at this time. Care is also provided in nursing homes, assisted living facilities, and hospice centers.

Care is paid for by Medicare, Medicaid, and most private insurance plans and HMOs.

The National Hospice and Palliative Care Organization reports that more than 1.5 million people received care from our nation’s hospices last year.

One of the best ways to make sure you and your loved ones benefit fully from hospice, should you ever need this care, is to talk about it before it becomes an issue.

For more information, please call us at 973-383-0115. You will also find information about the moments that hospice makes possible for patients and families at www.MomentsOfLife.org.