Category: Caregiving

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Why I Decided To Become A “Death Doula” At 33

By Christine Colb

[E]vi Numen, 33, of Philadelphia, could be considered a little death-obsessed. She’s the curator and founder of Thanatography.com, a site that showcases the work of visual artists exploring the themes of death, grief, and loss. Previously, she worked at the Mütter Museum, known for its collection of medical oddities and pathological specimens, such as presidential tumours, murderers’ brains, and books bound in human flesh. She has also recently added a line to her résumé — she’s a “death doula” in training — one of the first in the United States.

Evi Numen
Evi Numen

Numen can be excused for being a little morbid. When she was 20, she survived a car accident that killed her partner on impact. Earlier that night, he had told her he was going to propose. While in the hospital recovering from her injuries and raw with grief, she kept asking if she could see his body in the morgue. “I needed to confront his death to truly believe it,” Numen says. “My doctors thought I couldn’t take the sight of him, dead and broken, but to this day I believe it would have helped. Seeing him in his coffin during the funeral a week later felt staged and artificial.”

Last April, when her late partner’s father was in rapid decline with cancer, Numen rushed to his side. “I held his hand, listened, and talked to him when he could, and also allowed his loved ones to take a break from the bedside. What I couldn’t do for my partner, I tried to do for his father.”

A large part of the assistance Numen provided was for his family. “I had to remind them it was okay to take care of their own needs. I couldn’t “fix” anything, but I could bring food so it was there when people needed it, or stay by the bedside and encourage family members to go for a brief walk to get some fresh air.”

Caregivers [of the dying] often need to be ‘given permission’ to care for themselves properly.

 
After her partner’s father died, Numen knew she had found her new calling. She did some research and found the International End of Life Doula Association (INELDA). “Immediately, I knew this was the right next step,” says Numen. Cofounded by former hospital social worker Henry Fersko-Weiss in February 2015, INELDA trains people to provide emotional support for the dying — and their family members. Ferko-Weiss was inspired by the concept of doulas who support a mother and her partner during pregnancy and childbirth. “I kept seeing people die in ways that I thought were unfortunate or even tragic. I was trying to figure out how to change that. To me, the principles and spirit and techniques of birth doulas could be interpreted and adapted for the end of life,” says Ferko-Weiss.

A certified death doula can help not only the dying person, but will assist their loved ones throughout the entire death process, from coming to terms with mortality weeks or even months before the death to remembering and memorialising their loved one after passing.

Numen took a 22-hour training with INELDA and has logged more than 20 hours of volunteer training at two different area hospices. She’s been coached to become familiar with the physical changes the body goes through directly preceding death — and in helping comfort and counsel the dying person and their family from the point of a terminal-illness diagnosis all the way through even a year after a death. “I think many of us have the tendency to be problem-solvers and try to offer solutions to someone who is hurting, but there is no solution to dying,” Numen says. “It is easy to develop the habit of offering platitudes to such a situation, such as, ‘This too shall pass.” But that’s not actually comforting to a grief-stricken person. I know this from my own experience. Instead, I serve as an active listener, letting the other person really talk about all their conflicting emotions.”

Numen says that one of the most fascinating parts of her training was learning how to recognise when the person is “actively dying.” “Most of us know what the birthing process is like — foetal development, labor, contractions, water breaking, and such are fairly common knowledge in the Western world. Yet very few of us know anything about what it looks like to die: Your appetite decreases, your skin changes colour, breathing sounds different. There is a huge discrepancy in how we view the two ends of human life. It is easy to see how such ignorance about death can lead to avoidance and fear.”

Numan had asked the nurses at a hospice where she was volunteering to call her if they needed someone to keep vigil for an imminently dying patient, especially if their family couldn’t be there. “My objective was to be with the person who needed me the most,” she says. She was called to the bedside of an elderly man in end-stage pulmonary disease. He had no family present and was unable to communicate. She was his sole companion in his final moments. She knew from her training that he only had a few hours of life remaining.

Over the course of seven hours, Numen played Clint Mansell, Erik Satie, Rachmaninoff, and Chopin on her iPad as she sat by the man’s bedside and watched him breathe. “His breath cycles grew further and further apart, but only by seconds, which to me felt like minutes as I found myself holding my breath with him,” says Numeb. “I knew he was very near. Within an hour, his breath got steady but oddly mechanical, more like a reflex than an action, and then the next inhale never came. I called the nurse and she confirmed the death. It was easier and more peaceful than I thought it would be, and yet it affected me more than I expected. I had, after all, trained for this, read about it, and kept vigil to other dying patients, but his passing was the first I had witnessed.”

Despite all her preparation, Numen was so deeply affected by the experience that she had to skip her next scheduled shift. “Being there for that man, when no one from his family was able to, affected me more than I thought it would,” she says. “I didn’t cry — I felt it wasn’t my place to, like I was just a stand-in for his family. There is a weird sense of intruding, especially when keeping vigil for complete strangers, that I have not been able to reconcile yet.” It also had a personal resonance for her. “Witnessing a death brought up the other losses in my life, and I had to honour these emotions before I could return to keeping vigil for someone else,” Numen explains.

Witnessing a death brought up the other losses in my life, and I had to honor these emotions before I could return to keeping vigil for someone else.

 
Despite her unanticipated reaction, she is even more committed to her calling of caring for the dying than she was before. “It wasn’t gross or scary, but it was certainly difficult. Every death will be different, and maybe it will get easier or less nerve-wracking, but it will not get any less worthwhile. Even if I never get to talk with the patients I attend to, knowing that I brought some small amount of comfort is enough.”

She’d also like to see more people become comfortable with ageing and the dying process. In a culture where ageism is rampant, Numen has found that learning about the end of life has actually made her less apprehensive of getting older — and the inevitable end. “Most of the patients I’ve seen close to death were peaceful and tranquil. They seemed comfortable and had this beautiful glow about them, this serenity that I didn’t expect to see. I’m still fearful of sudden death and the suffering of prolonged illness, but not of the dying itself.”

Numen also hopes that more family members will recognise that a death doula can be an option that can bring enormous comfort in someone’s final moments. “It’s about regaining control over an uncontrollable process,” she says.

Complete Article HERE!

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The transition from curative to palliative care

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[K]athryn Martin, registered nurse and Faculty Lecturer in the Faculty of Nursing, doesn’t attend the funerals of her deceased patients. But she knows nurses who do.

“You become quite close with the families,” Martin says. “It’s okay to have feelings about the situation. I respect other nurses attending funerals, but I personally don’t (attend). It’s important to set your own boundaries.”

Martin says decades of working in the intensive care unit have made an impression on her. The ICU is a hospital unit dedicated to treating patients with severe and life-threatening conditions. She remembers cases from years ago with vivid detail, and feels she has made a difference in the lives of her patients.

Nursing is a complex and dynamic profession. RNs work with patients and families around the clock, and are often advocates for patients and their families. Nurses advocate for time, information, increased pain medication, spiritual services, and any other needs families may have.

One of nursing’s significant challenges is transitioning patients with life-limiting illnesses — illnesses in which death is the expected outcome such as cancer, heart disease and dementia — from curative to palliative care. The goal of curative care is to modify a disease, either through management or working towards a cure. It can involve intense medication regimens, 24/7 nursing care, repeated hospital stays with limited visiting hours, and it isn’t often provided at home. Palliative care, alternatively, focuses on comfort as opposed to modifying or curing a life-limiting condition. It is provided both at home and in health facilities such as long term care centres or hospitals. Common aspects of palliative care are reduced invasive procedures and increased
pain medications.

When the transition between curative to palliative care goes well, the grief impact on families is minimized and the work experience can be satisfying for health care professionals. When it doesn’t, many walk away with feelings of hurt, failure, and of letting loved ones or patients down — people close to patients often interpret the transition as medical professionals letting patients die. An article in the Journal of Palliative Medicine reports that during the five years previous to 2012, at least half of the physicians surveyed had experienced a patient’s family members, another physician or another health care professional describing their palliative methods as “euthanasia, murder or killing.”

“Transitioning from curative to palliative care is anything but a static process,” says Kristin Jennings, an RN experienced in palliative care. “Unfortunately, (to some) it feels as though our medical system gives up hope.”

In spite of treatment that can be harsh, palliative care is not diagnosis-centred, but person-centred care. It focuses on the needs of all key players: patients, families, caregivers, and loved ones with hopes of creating the most possible value in a person’s last days, weeks, or months. It is a broad category, encompassing anything from the removal of life support to increased pain medications.

The increasing prominence of palliative care in the past decade is a marker of change in medical thinking towards a more holistic model of care. Palliative methods are now initiated much earlier in treatment than they have been in previous years and are starting to be provided concurrently with curative methods. Comfort matters, and it matters throughout the entire experience of illness.

“In an ideal world, palliative care would be initiated when an individual is diagnosed with a life-limiting illness,” Jennings says.

The value of a “good death” is frequently discussed in health care literature and public media. Value lies not only in how we live, the arguments go, but also in how we die. A good death can mean a week on the beach with loved ones — it can also mean minimizing time spent breathing with a ventilator. The scope of end-of-life care is broad, but value can be created in both situations and all in between.

“There are only two things we can guarantee in life: birth and death,” Jennings says. “The processes of being born and dying are dynamic and unique experiences that deserve equivalent amounts of respect, care, compassion and love.”

“Death has the potential to be a beautiful experience.”

Jennings chooses to attend patient funerals — she says they keep her humble.

“I get to share grief, see an individual’s beginning, middle and end, and see how many people were impacted by their life.”

The most crucial factors in a smooth transition between levels of care are time, information, and communication. Martin says she’s seen physicians give families three to seven days to process information in the smoother transitions she has participated in.

“Lack of time is the worst thing that can happen,” Martin says. “Resistant family members need to be able to ask questions. You need to take any and all questions. You need lots of people to interact with resistant family members and provide consistent information over those days.”

When a transition is abrupt, key players feel they are letting their loved ones down. Family meetings, multiple conversations with care providers, and openness to questions are all necessary.

“(Relatives) feel they are letting their loved one die … They need lots of information about the pathophysiology of what is going on,” Martin says.

Second-year nursing student Olivia Roth says she most likely will attend the funerals of her patients.

“Attending funerals will allow me to grieve, and make the process feel full circle,” says Roth.

Roth had an “eye-opening” experience caring for a palliative patient in her first year.

“It really transformed the way I thought about nursing … It was hard for me to understand that switching from curative to comfort measures would allow her to die with dignity,”Roth says.

Palliative care can also be provided in final moments when an individual is dying suddenly, or after a short period of illness.

When a patient dies suddenly, or without a period of anticipation by the family, there are greater feelings of loss than when a death is foreseen. Family members and other loved ones experience increased stress and higher rates of morbidity in the two years following a sudden death.

Loved ones sometimes turn to requests for potentially inappropriate treatment. Potentially inappropriate treatments are those that may have a small chance of treating the patients, but ethical considerations justify not providing the treatment. Some examples of potentially inappropriate treatment could be extended intubation, or life support beyond a reasonable timeframe.

Responding to requests for potentially inappropriate treatment can create moral, ethical, and legal dilemmas for health care professionals. Potentially inappropriate treatment can include ICU stays when prognosis is poor. Intensive care unit stays are costly in terms of dollars as well as discomfort, and can cause potentially traumatic experiences. Forced intubation, intravenous and arterial lines, time spent breathing on a ventilator, and decreased ability to communicate all add to the dramatically uncomfortable experience of an ICU stay.

Finances are also considered. Health care professionals never hope to have a conversation regarding the ethical and financial benefit of keeping somebody’s loved one on life support, but public dollars are sometimes a factor to be considered in medical decision making.

“It’s important to consider resources,” Martin says of one of the hardest conversations professionals and families face. “Access to intensive care beds, nursing care, ventilators, medications … It’s all very expensive.”

Many health authorities have developed policies and timelines to facilitate transitions from curative to palliative care, and the denial of requests for potentially inappropriate care. One significant aspect of the grief experience can be anger towards professionals, but evidenced-based, health authority-wide timelines can lessen feelings of anger towards and abandonment by the health care team.

Along with the families of patients, health care professionals can also  walk away from end-of-life experiences with pain and grief.

“It’s exhausting, both emotionally and physically,” Martin says. “But when (the transition) goes well, it’s one of the most satisfying experiences you can have. You feel like you’ve made a difference.”

Complete Article HERE!

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How a death doula can help patients and families in end-of-life transitions

By Debra Kaszubski

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.
While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Doulas have typically assisted women during childbirth, or to support the family after the baby is born. But recently some doulas have shifted their focus to helping dying patients and their families.

Merilynne Rush and Patty Brennan, alternative health professionals, will offer Michigan’s first end-of-life doula training Nov. 18-20 in Ann Arbor. The sessions are geared for family members and friends of the dying, hospice and palliative care workers, midwives and doulas, clergy, therapists, life coaches, and anyone interested in preparing for their own death. It is not recommended for the recently bereaved.

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Death doulas typically have experienced loss and want to encourage conversations and decision making about dying so patients and families can make their last days and the bereavement process more meaningful.

Each doula’s services are tailored to the specific needs of each patient and his or her family. They can include helping to create a death plan and caring for patients whether in a hospital or at home. Death doulas provide spiritual, emotional and psychological care to patients and their families, and can help plan home vigils and funerals.

Fees for their services also vary widely; some charge per hour, others offer packages for specific services, and some work on a volunteer basis or waive their fees for families who can’t afford their services.

“As more and more of us live longer and face chronic and life-limiting illness, the period of dying has extended from a few days or weeks to months or years,” Rush said. “Medical care focuses solely on cure and treatment. Patients often feel adrift among medical choices while grasping for ways to live with illness in full awareness that death will come. Life choices include acceptance, growth and sharing gifts of love and preparation. There is much meaning to be found during the dying year that is profound and life affirming.”

Deanna Cochran, a former hospice nurse from Austin, Texas, became an end-of-life doula after her mother’s death. She now works with patients who call on her to help them write advanced directives, plan funerals and prepare their family for their passing.

Cochran notes that death is a topic many people continue to feel uncomfortable addressing with their loved ones. Doulas can break the ice and serve as an impartial third party who facilitates conversations about end-of-life wishes.

“I started my private practice to help other families have the same end-of life experience that my mom had,” Cochran said. “My mom didn’t want to die in a hospital. She got to stay in her home with her family and dog and to remain comfortable, despite having an aggressive cancer.”

During the training sessions in Ann Arbor, participants will attend several workshops: assessing the needs of the dying, what is “good death,” how to hold a vigil, hands-on comfort measures, and working with the hospice and palliative care team, as well as doula practice considerations. Day three covers how to have a home funeral, a normal extension of hospice care which brings healing and comfort to friends and family through hands-on involvement in care of the body after death.

The event takes place at the Center for the Childbearing Year, 722 Brooks St. in Ann Arbor. For information and to register, visit center4cby.com.

Complete Article HERE!

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‘I regret not talking to my mother about her death, don’t do the same thing’

The Irish Hospice Foundation wants people to talk about death, dying and grief more openly.

By Órla Ryan

WE WERE AFRAID to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Rebecca Lloyd’s mother, Christine, died 12 years ago. She was diagnosed with Motor Neurone Disease (MND) eight months previously.

MND is a progressive neurological condition that attacks nerves in the brain and spinal cord. This means messages gradually stop reaching a person’s muscles, which leads to weakness and wasting.

Rebecca notes that MND is often referred to as the “1,000 day disease” as most people diagnosed with it die within that number of days.

“She had much, much less time. It was horrible. She was such a huge part of lives,” Rebecca says of her mother, who was in her early 60s when she died.

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Christine

“It turned my life, our lives, upside down … MND is a debilitating disease. Diagnosis to death was less than eight months … It changed our lives dramatically.”

Rebecca told TheJournal.ie she was living in California with her husband and baby son when her mother was diagnosed with MND.

They moved back to Yorkshire in England, where Rebecca is from, and were there for the final few weeks of Christine’s life.

‘Grief is just so hard’ 

While she is grateful she was around to spend time with her mother, Rebecca deeply regrets that she and other family members didn’t talk to her about her death.

“We were afraid to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Even as an adult grief is just so hard. What I’ve learned since then is that talking about it always makes it easier.

Rebecca praised her father Paul for the “magnificent” care he provided for Christine, enabling her to stay at home until the day before she died.

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Rebecca

Her mother’s death had a profound effect on her – in more ways than one. It led to her giving up her job as an engineer and she now works with the Compassionate Communities Project at the Milford Care Centre in Co Limerick.

“I made it my life’s goal to help people who are dying or bereaved.”

Rebecca says a large part of her job is “talking to people who are fit and healthy to get them to talk about planning for death”.

“We can make lots of decisions when we are calm and fine … We are not as good at making decisions when we’re in hospital and crisis has hit us.”

Death charter 

With this in mind, Rebecca helped devise the Irish Hospice Foundation’s (IHF) Charter on Dying, Death and Bereavement. The survey aims to gather the views of people in Ireland about death and grief before presenting them to the Government in a bid to help guide the national approach to services and supports for dying and bereaved people.

It has received about 600 responses in three weeks, and the goal is to reach at least 1,000. Rebecca says she has been “blown away” by the reaction.

“It’s notoriously difficult to get people to fill in surveys – you’re normally lucky if you get 20 or 30 people, especially dealing with something people don’t want to talk about. People obviously really do want to talk about it.”

Rebecca says people often avoid talking about death and dying because it’s an awkward topic and they might not know what to say.

She says some bereaved people have told her grief starts when the funeral ends.

We’re brilliant at funerals, the Irish are brilliant at funerals. After the month’s mind [mass] the support disappears. Especially for carers, they’re kind of just left.

Rebecca states that bereaved people often become socially isolated and sometimes people avoid bringing up their loss, noting: “We feel crippled with anxiety that we just don’t know what to say.”

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The goal of the charter is to place death and bereavement on the national agenda so people are more comfortable discussing it, and have access to services that will help when they’re in need.

Rebecca notes that Ireland has an ageing population and, according to a previous IHF survey, three quarters of people want to die at home.

“We want the Irish people to say what they want to see happen. The thing is we don’t know what they want.

“Are they afraid of pain? Are they afraid of what will happen to their family? Are they afraid of talking about death?”

‘Very lonely decisions’ 

IHF chief executive officer Sharon Foley said: “We are asking people to remember and reflect on their own experiences of dying, death and bereavement and re-imagine what it might take to facilitate a good death.

For all of us there will come a time when we will need care through illness and it’s important we understand how people look at death and dying to ensure correct supports are in place.

Campaign supporter Jillian van Turnhout, a former Senator, recently spoke about helping her father have his say at the end of his life.

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“Talk about end of life when you are healthy so you really know what your loved ones want.

“My father Michael wished to remain in Clonskeagh community nursing home instead of going to hospital when he was told he had 24 hours to live. Clonskeagh was his home at that point and it was where our family ensured he remained until he passed away a year after the decision.

Very lonely decisions have to be made at end of life and it’s important we feel no guilt in making these choices because we know it’s the wishes of our loved ones. My family and I made sure dad’s wishes were held to the end and that’s what keeps us strong now.

The IHF is currently holding death cafés, where people get together and talk about death and grief over a cup of tea and a bite to eat, in various locations around Ireland. The next one is due to take place on Monday at Dublin City Council Civic Offices on Wood Quay from 11am – 1pm.

“We need to be more honest, attend death café conversations and complete the Irish Hospice Foundation’s survey so we can make a path for the people we love and know what matters to the people of Ireland. Talk in advance and check in with each other, even if it’s only one dinner conversation,” van Turnhout advised.

Complete Article HERE!

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This Man’s Letter To The Hospital That Cared For His Wife Is Going Viral

He wants to thank the staff for their compassion.

By Claire Hannum

laura-levis

Last month, Laura Levis died at just 34 years old after suffering a devastating asthma attack. Her husband, Boston-based writer Peter DeMarco, has been sharing tributes to Levis on Facebook since her passing. One such tribute was a thank-you note to the staff of CHA Cambridge Hospital in Boston, where Levis spent the final days of her life. The New York Times republished the letter, and it has since gone viral, touching the hearts of thousands of readers.

The letter opens with DeMarco noting that he still remembers the name of nearly every medical professional who cared for his wife in the hospital. “As I begin to tell my friends and family about the seven days you treated my wife, Laura Levis, in what turned out to be the last days of her young life, they stop me at about the 15th name that I recall,” he wrote. “The list includes the doctors, nurses, respiratory specialists, social workers, even cleaning staff members who cared for her. ‘How do you remember any of their names?’ they ask. ‘How could I not,’ I respond. Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious.”

DeMarco continued to describe the extraordinary compassion the staff exhibited towards him, his wife, and his family in what was possibly the hardest week of his life. He explained how the doctors and nurses made Levis’ father, a doctor himself, feel involved in the decisions surrounding her care. He expressed gratitude for the staff’s willingness to break hospital rules so that the couple’s cat could pay one last visit to Levis in her room. DeMarco also admired the staff’s thoughtfulness in keeping him company when he needed it most. DeMarco went on to expressparticular gratitude over a night when Levis’ family and friends stopped by to say their goodbyes:

“One special evening, you gave me full control to usher into the I.C.U. more than 50 people in Laura’s life, from friends to co-workers to college alums to family members. It was an outpouring of love that included guitar playing and opera singing and dancing and new revelations to me about just how deeply my wife touched people. It was the last great night of our marriage together, for both of us, and it wouldn’t have happened without your support.

In an especially powerful verse, DeMarco thanked two nurses for providing him with a special final hour alone with his wife. “There is another moment—actually, a single hour—that I will never forget,” he began, before explaining that on the final day of Levis’ life, DeMarco was hoping for some time alone with her. He asked Levis’ nurses, Donna and Jen, if they could help him set up a hospital recliner next to her bed. Instead, the two nurses shifted Laura further to one side of the bed so DeMarco could lay beside her, and gave the two an hour alone together.

“I nestled my body against hers,” DeMarco wrote. “She looked so beautiful, and I told her so, stroking her hair and face. Pulling her gown down slightly, I kissed her breasts, and laid my head on her chest, feeling it rise and fall with each breath, her heartbeat in my ear. It was our last tender moment as a husband and a wife, and it was more natural and pure and comforting than anything I’ve ever felt.” What a beautiful act of kindness by two incredible nurses. The entire essay, which can be read at The New York Times, is full of heartfelt compassion. Our thoughts are with DeMarco and with Levis’ family as they grieve her passing.

Complete Article HERE!

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Caring for the caregiver

By Mary K. Spengler

[C]aring for a loved one, whether a family member, friend or neighbor, is becoming increasingly common as the baby boomer generation continues to age.

According to AARP and the National Alliance for Caregiving, 40 million Americans provide care for an adult friend or family member who is ill. While the typical family caregiver is a 49-year-old woman, there is an increasing number of men serving in this role. In addition, about one-quarter of all caregivers are now between the ages of 18 and 34.caring-for-caregivers

The responsibilities of family members or friends that find themselves in this situation do not end with caregiving; many also hold full-time jobs. Caregiver obligations can place demands on their schedule and emotions, causing significant stress both in and outside of the workplace. For this reason, those in this position must be sure to take care of themselves in order to protect their own health and well-being in all aspects of their life. It is imperative that caregivers understand that taking care of themselves is just as important as caring for a loved one.

While there are myriad rewards for providing care for another person, there are also potential risks to the caregiver’s health. Signs of caregiver stress may build up slowly and might not be immediately noticeable. Coworkers, friends or loved ones may detect mood changes, impatience with colleagues and clients and a lack of joy in workplace and social activities. Anxiety, irritability and exhaustion also are common signs.

Stress can contribute to lost wages and ill health effects on the caregiver without the proper tools and exercises. Some simple steps can be taken to prevent or minimize the effects of stress. Seeking help is paramount. Very few people can handle the financial, physical, emotional and logistical burdens alone. Take turns with a family member. Pay attention to your own limitations and know when to ask others for assistance.

According to the Family Caregiving Alliance, it is not unusual for caregivers to develop mild or more serious depression as a result of the constant demands they face in providing care. Be sure to know what the signs of depression are — which include notable increase or decrease in appetite, fatigue, change in sleep patterns, and a loss of interest in people and/or activities that once brought you pleasure, among others — and ask for help through individual counseling or a community-based support group.

In order to avoid any misunderstandings with their loved one’s medical team, caregivers must take the time to communicate with them. Ask questions of the doctors, nurses and social workers and understand when and where the professionals must step in.

Personal time is absolutely essential for those managing a full-time job and caring for a loved one. They should be encouraged by those around them to explore options for using personal time for both caregiving and self-care. They may need reassurance that taking time off, even for half a day or just a few hours, will not adversely impact the company or their job.

Perhaps most importantly, caregivers should not forgo enjoyable activities. Spend time with friends. Gardening, reading, painting, exercise and meditation can help to alleviate the stresses of caregiving. It is imperative that they spend enough time on themselves while caring for a loved one.

Being a caregiver can be very rewarding, but it is also a balancing act. Caregivers must be aware of their own health and well-being as much as they are about that of their loved ones.

Complete Article HERE!

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Hospice volunteers find joy and wisdom in comforting others

Volunteers at MJHS Hospice offer comfort to its residents during their final days.
Volunteers at MJHS Hospice offer comfort to its residents during their final days.

 
By Karen Frances McCarthy

[E]ach day, ordinary Riverdale residents arrive at a hospice on Henry Hudson Parkway and volunteer to sit with the young and old, rich and poor, religious and non-religious, comforting them during their last days.

Many would see this as a gloomy way to spend time, especially in a society uncomfortable with the idea of human mortality. But volunteers at the 18-bed MJHS Zicklin Hospice Residence describe the experience as anything but morbid. They unanimously agree that sitting with those approaching the end of their lives has enriched volunteers’ own lives in unanticipated ways.

One of the volunteers, Dejanee Velasquez, 23, said it is often the patients who brighten her day.

“I’ve been visiting one patient regularly and we have formed a good relationship,” Ms. Velasquez said. “One day the nurses told me that the patient hadn’t been talking too much lately. When I went to visit with him that same day, he smiled so big that it made me smile … he was talking so much and [said] he was glad that I visited him that day.”

The founding of the modern hospice system is widely credited to Cicely Saunders, who worked in the UK in the middle of the 20th century. She wrote: “You matter because you are you, and you matter to the end of your life.”

But nearly a decade before Ms. Saunders’ birth in 1918, a charity group known as The Four Brooklyn Ladies was inspired by similar ideals to found a precursor of the modern hospice in New York in 1907. After going door to door to raise money, they got a small tenement building in Brooklyn to offer compassionate, dignified and respectful end of life care to local residents.

Despite this pioneering start, New York has been slow to embrace hospice care. In 2012, 32 percent of New Yorkers were enrolled in a hospice during the last six months of their lives, compared to 51 percent nationwide, according to numbers reported by WNYC radio. Experts surmise that this may have something to do with patients› fears that a hospice referral means accepting they will never recover, according to media reports. Another reason may be New York’s medical culture that focuses on curing patients rather than caring for them and eventually letting them go with dignity, NPR reported.

For hospice staff and volunteers, this presents unique challenges in trying to make everyone feel loved, respected and comforted. Their approach sounds simple – companionship. Some find ways to use their individual abilities: in creative drawing, helping to write letters or playing music. Sometimes they will meet outdoors, especially if the weather is good and a patient would like some fresh air. The change in scenery can often provide a boost to the spirit.

“I never cease to be amazed by the quality of individuals who are drawn to offer volunteer services to our patients and families,” said Patricia Cusack, director of MJHS volunteer services. “[It] enlightens me on a daily basis to be more cognizant of the awesome reality of the goodness within people who freely give their time, talent and energy to lighten the burden for hospice families and patients.”

Susan Adler, 54, is a licensed massage therapist and long-time hospice volunteer.  She was inspired to volunteer after by the hospice care her mother received at the end of life. Ms. Adler said she decided to try to make a difference in the lives of others by offering massage to help with pain relief and relaxation.

“It can be difficult to see people struggling physically with the loss of their health and strength, and struggling emotionally with the knowledge that they are soon going to die,» Ms. Adler said. “But I am grateful to be able to provide some relief to them through massage, and help make them feel cared for.”

One of the most important parts of care is listening, and this is something volunteers are better equipped to offer than the medical team. Patients sometimes share memories they do not want to share with the doctors or even family members or clergy. They can express pride in their accomplishment and feel they can admit regrets without being judged.

More often it is the little human gestures that count. Ms. Adler recalls being given strict instructions by an often-ornery woman to make tea by grating ginger and boiling water. Doing her best and terrified she got it wrong, she returned to the room, cup in hand, to be met with a smile and the words: “No, no, dear, that’s for you.”

Volunteers such as Ms. Adler and Ms. Velasquez agree that with all the hassles and ingratitude of daily life, walking into the hospice and being appreciated by patients for making a difference in their lives has been rewarding.

But it is not without challenges. There will come a day when the people with whom they have shared their time, their life›s stories, their laughter, and their friendship will no longer be waiting. Sometimes they will sit vigil while their new friend slips away. Sometimes they will arrive the next day to find an empty bed. Fond and final farewells are part of life for those who sit with the dying.

Yet, they say they would not trade this sadness or waver in their commitment to offer simple human compassion and companionship. Many of them have found something positive in witnessing the cycle of life intimately and often. Listening to stories of people›s lives in their twilight hours, learning what it important and what is meaningless when all is said and done, have given them a perspective and wisdom, and a sense of the preciousness of life and human dignity, volunteers said.

“The experience has changed me tremendously,” Ms. Velasquez said. “The way I think about life has also changed. Death is not picky: it can happen to anybody at any age. Because of this, it’s important for me to be grateful for everything that I have and to continuously live and enjoy life.”

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