08/11/17

Nearly 1 In 5 Hospice Patients Discharged While Still Alive

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Hospice care is for the dying. It helps patients manage pain so they can focus on spending their remaining time with loved ones. But in recent years, nearly one in five patients have been discharged from hospice before they die, according to government reports.

A study published last month in the journal Health Affairs finds that hospices with the highest rate of so-called “live discharges” also have the highest profits. The lead author is Rachel Dolin, a David A. Winston fellow researching health policy. Her paper found an association between high live discharge rates and high profit margins, but it didn’t determine the cause.

“It’s important to continue to study this area to get a better sense as to whether profits are driving the decision to discharge patients from hospice, rather than patient preferences and needs,” says Dolin.

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

“It was decided that I was not dying fast enough,” he told Arizona Public Media in 2015. “And so, to put it most succinctly, I flunked the hospice program.”

Nelson died a few months after giving that interview, but his situation isn’t all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It’s important to understand, though, that when patients are discharged from hospice, they don’t necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

Medicare pays the bills for the vast majority of patients receiving hospice care, at a cost to the government of at least $15 billion a year. Federal regulators have questioned whether high rates of live discharge mean that hospices are making money by admitting patients who aren’t actually dying.

But these decisions aren’t that clear cut, says Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “We see more and more patients that have conditions like Alzheimer’s disease or Parkinson’s disease that don’t always follow a predictable course,” says Rotella.

Some who study aging are concerned that certain hospices are gaming the system. That’s a worry of Susan Enguidanos, an associate professor in the Leonard Davis School of Gerontology at the University of Southern California. For example, she says that some hospices may be trying to avoid paying for costly treatments by discharging patients temporarily when they need to go to the hospital.

“Individuals that are going in for these very brief health issues are coming out and then, they’re being readmitted to those [same] hospices,” says Enguidanos.

That’s not a good reason to discharge someone, says John Keyserling, senior vice president for communications and policy at the National Hospice and Palliative Care Organization, the trade association for hospice providers.

“Any association between profit margins and clinical decision making is inappropriate and not something that the hospice community supports,” Keyserling says.

That hospice community has nearly doubled in size since 2000. Susan Enguidanos says it’s also changed a lot.

“Hospice organizations started as grass root efforts and were largely non-profit for a long time,” she says. “Now we’ve had a huge increase in for-profit hospices.” There’s a concern, says Enguidanos, that by discharging patients early, some hospices may be “trying to avoid costs that they should be responsible for.”

Whatever the short-comings of some hospices may be, Keyserling says that his biggest worry is that people who could be helped by hospice aren’t taking advantage of it in time. He says about half of patients die within 17 days of being admitted. And that turns hospice into “crisis care” instead of the comfort care it’s intended to be.

Complete Article HERE!

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07/13/17

As family members dominate caregiving, outside support is hard to find

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By Steven Ross Johnson

Nearly 9 out of 10 caregivers for older Americans are unpaid, and those individuals work longer hours and receive less government support than their paid counterparts, according to a new study.

Approximately 900,000 Medicare beneficiaries received support from 2.3 million caregivers in 2011, according to the study published Wednesday in Health Affairs. The study looked at data from Medicare beneficiaries who lived in community settings and died within one year of study enrollment.

That’s just the tip of the iceberg. In 2015, roughly 34 million Americans provided unpaid care to an adults age 50 or older in the last 12 months, according to figures from the National Alliance for Caregiving and AARP.

Unpaid end-of-life caregivers provide nearly double the hours of support per week compared to other caregivers, but they did not receive additional pay from government or private insurance, according to the Health Affairs study.

The study illustrated the heavy economic burden family caregivers can face when they provide end-of-life support and how the healthcare system relies on family members to take on that care, according to Katherine Ornstein, assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City and lead author of the study.

“We need to do more to make sure that our infrastructure is supporting (family caregiving) so that it can be done well and that the consequences for family members are not negative,” Ornstein said.

Medicare spending in 2011 on patients during their last six months of life accounted for 28% of the total $554 billion the program spent on healthcare that year, according to the Kaiser Family Foundation.

The value of unpaid care provided by friends or family members was valued at roughly $470 billion in 2013, according to the National Alliance for Caregiving and AARP.

Government and healthcare stakeholders can provide family caregivers with information and resources to help set and reschedule physician appointments, work with insurers or make care decisions to ease their burdens, Ornstein said.

Those resources could go a long way with spouse caregivers in particular. More than 42% of Medicare beneficiaries in the study received help from their spouses, according to Ornstein’s analysis. But nearly two-thirds of spouse caregivers reported that they received no support from family or friends.

Still, approximately half of Medicare beneficiaries received support from their daughters and one-third received help from their sons.

By comparison, 14% of study participants received caregiving support that wasn’t for end-of-life care from paid helpers and 20% secured paid help for end-of-life care, the study found.

Family dependence for end-of-life or aging care is only expected to rise as the elderly population will nearly double from 2012 to 2050, increasing to more than 83 million, according to the U.S. Census Bureau.

But family members and loved ones may not be able to meet those increasing care demands. A 2013 report by the AARP Public Policy Institute found that there were an average of about seven potential caregivers for every patient age 80 and older in 2010, but that ratio was expected to decrease to 4 to 1 by 2030 and to 3 to 1 by 2050.

Complete Article HERE!

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07/7/17

The deaths that changed my life

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A palliative care specialist reveals what she’s learnt

With two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

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07/5/17

Navigating the end of the road

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Death doulas offer education, support to those seeking alternative options while dying or grieving

A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.

By Courtney Vaughn

When both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.

She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.

“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”

Ward succinctly recalls the emotional sterility of the situation.

Nancy Ward

“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”

Six weeks later, her mother died.

“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.

Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.

Ward is now used to confronting death. In fact, she and others have made a living out of it.

A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.

The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.

Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.

The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.

“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”

Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.

Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.

“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”

That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.

She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.

“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.

“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”

Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.

Asher Wallis

“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.

He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”

Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.

“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.

Complete Article HERE!

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06/19/17

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

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Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

Each week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!

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06/15/17

30 Resources to Help Caregivers

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Senior caregiving is time consuming, resource intensive, and something 34.2 million people in the United States are trying to balance with everything else going on in their lives. Being the primary caregiver for an aging loved one is hard work, and a lot of caregivers are struggling with the burden without knowing where to turn for help.

Luckily, you do have options. We’ve compiled a list of 30 resources for caregivers that can help ease your burden and provide helpful information on how to handle caregiving more effectively.

Organizations that Help Caregivers

Several organizations are devoted to providing resources, aid, and advocating for seniors and caregivers.

  1. Administration on Aging

The Administration on Aging is a government organization specifically devoted to providing programs and services to help aging seniors continue living independently. While the organization is primarily focused on the well being of seniors, it includes an Office of Supporter and Caregiver Services that helps provide funding to families for resources to help with caregiving.

  1. Family Caregiver Alliance

The Family Caregiver Alliance is a nonprofit organization that provides services and education programs, as well as doing advocacy work to help encourage government policy that’s helpful to caregivers.

  1. Caregiver Action Network

The Caregiver Action Network provides educational resources for caregivers and a forum to connect family caregivers with others dealing with similar issues.

  1. Rosalynn Carter Institute for Caregiving

The Rosalynn Carter Institute for Caregiving provides support programs and training resources for caregivers, as well as advocacy to encourage greater institutional help for caregivers.

  1. National Respite Network

Sometimes caregivers just need a break. The National Respite Network helps caregivers find respite services that temporarily take over some of the caregiving tasks so family caregivers can take a well-needed break.

6. Become A Caregiver

If you are looking to become a caregiver anywhere in the United States, look no further than caregivers.com.  They help get families and caregivers in touch quickly and easily and will ensure the family gets the best caregiver they can while matching the caregiver’s skill set to the right family.

Resources to Find Caregiving Support

A lot of caregivers find they need support in various forms, but don’t know where to start looking. These resources can help with some of the support you need.

  1. Benefits Checkup

Navigating the system of benefits available to seniors is tough, and many seniors leave potential aid or money on the table because they don’t know it’s out there for them. The Benefits Checkup site makes it easier to quickly see what benefits are available in your area that you or your loved one are likely to qualify for.

  1. Family Care Navigator

The support resources available to caregivers vary based on your geographic location. The Family Care Navigator helps you hone in on what programs and organizations are specifically available to you in your state.

  1. National Volunteer Caregiving Network

The National Volunteer Caregiving Network helps connect volunteers that want to help others in their communities with the seniors or people with disabilities that need that help. Volunteers help with things like transportation, errands, and home repairs.

  1. Lotsa Helping Hands

Lotsa Helping Hands is another website that helps connect volunteers with caregivers in their area that need some extra help. Caregivers can put the help they need on the website’s calendar and available volunteers step in to provide help with tasks like meal delivery or rides to appointments. 

  1. Eldercare Locator

The Eldercare Locator is a resource provided by the Administration on Aging to help seniors and caregivers find trusted professionals to help with the various services seniors commonly need, like home modifications and legal assistance.

  1. Well Spouse Association

Many senior caregivers are spouses taking care of their partner. The Well Spouse Association helps senior caregivers in this position tap into a larger community of other caregivers taking care of a spouse.

  1. Find Support Groups

Most communities have a number of support groups that caregivers can attend to find others struggling with similar challenges. Often, these support groups are specific to the particular issue your loved one is dealing with, such as cancer or Alzheimer’s support groups. These groups can be an invaluable resource for finding other people who understand what you’re going through and having a healthy outlet for your feelings.

Senior Care Options to Lighten the Load

Often what caregivers need most is somebody else to take on some of the work they’re trying to manage. These resources can help with that.

  1. Senior Day Care

Adult day care lets you drop off your senior loved one for the day while you work or run errands and trust that they’ll be in the care of trained staff. Senior day care also gives seniors a chance to socialize and stay busy in a new environment for the day, which many seniors start to need more as they age.

  1. In-home Care

In-home care professionals come to your home for a set number of hours to help out with the care your loved one needs. You can hire in-home care workers to provide basic around-the-house help, or home health care workers to provide health care to your loved one.

  1. Assisted Living

While many families hesitate to take the step of moving a senior loved one to assisted living, sometimes it really is the best choice for everyone. Assisted living facilities have staff available all hours of day to help with the ADLs seniors often need assistance with.

  1. Respite Care

If you don’t want to take a step that feels as permanent as assisted living, but you know you need a break, respite care can take the caregiving duties off your hands for a temporary period.

  1. Meals on Wheels

A big part of taking care of someone is making sure that they get enough meals each day to stay healthy. For overwhelmed caregivers, that’s not a small task. Meals on Wheels can help fill in with that part of your job in order to take one more thing off your plate.

  1. Independent Transportation Network

Once your loved one can no longer safely drive, getting them out to appointments and social events becomes another difficulty to manage. ITN helps seniors access affordable transportation options that provide the level of help seniors often need.

Educational Resources to Learn More About Caregiving Issues

People and organizations that can help are undeniably valuable, but sometimes getting the right knowledge at the right time is just as important.

  1. LongTermCare.gov

LongTermCare.gov is a government website full of educational resources to help people plan for long-term care and understand the options and benefits available to them.

  1. Guide to Veteran’s Long-Term Care

Veterans have even more potential benefits to tap into than most other seniors. If your loved one is a veteran or the spouse of one, this website can help you understand the benefits available to them.

  1. National Institute on Aging’s Alzheimer’s Caregiving Resources

A growing number of people provide care for Alzheimer’s patients, who require a distinct set of skills and knowledge to properly care for. The NIH provides educational materials to help caregivers learn what to do and expect.

  1. Alzheimer’s Association Caregiver Center 

The Alzheimer’s Association is one of the leading authorities on the disease. Their website provides a wealth of information on caring for Alzheimer’s patients based on up-to-date research on the subject.

  1. American Heart Association’s Resources for Caregivers

Heart disease is another common illness seniors face. The American Heart Association provides some educational tips for caregivers helping a loved one with heart disease.

  1. Cancer Caregivers Resources

The American Cancer Society likewise provides resources to loved ones of cancer patients to help provide the main information they need to take care of someone suffering from cancer.

  1. National Parkinson Foundation Caregiver’s Resources

The National Parkinson Foundation provides a number of resources to caregivers of seniors who have Parkinson’s. They also offer a helpline for caregivers that have questions.

  1. Caregiver’s Home Companion

The Caregiver’s Home Companion is a website that includes forums to connect caregivers to one another, and resources that cover many different aspects of caregiving, from the spiritual to the practical.

  1.  Next Step in Care

Next Step in Care provides guides for caregivers that help them figure out how to work with health care providers to figure out the next step for their loved one when facing complicated decisions and transition periods.

  1. AARP’s Caregiver Resources

In addition to the many resources they provide for seniors, AARP also provides planning guides and other educational resources for the caregivers that help care for seniors.

  1. Video Caregiving

For those that prefer to learn by video rather than reading, Video Caregiving provides a number of films to help caregivers learn the skills they need.

  1. mmLearn

mmLearn provides both videos and blog posts that cover an array of topics helpful to senior caregivers.

Senior caregiving is often difficult on a number of different levels, but any little bit of help you can get will make your caregiving work more sustainable and effective. Figure out which resources to help caregivers best fit your needs and take advantage of them. You’ll be a better caregiver if you’re less overwhelmed and getting the help you need.

Complete Article HERE!

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05/27/17

So, you want to hire a death doula?

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Three things to consider

By Amy Wright Glenn

It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.

In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.

But, what about death?

How many Americans have heard of “death doulas”?

Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.

Henry Fersko-Weiss is such a pioneer. Author of “Caring for the Dying: The Doula Approach to a Meaningful Death,” Fersko-Weiss has trained more than 350 death doulas through the International End of Life Doula Association. Fersko-Weiss believes that the end-of-life doula movement will grow faster than the birth doula movement did because the birth doula movement “brought the word doula into American consciousness.”

As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”

When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.

So, what to look for when hiring a death doula? Consider these three simple points.

  1. Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
  2. Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
  3. Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.

Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.

Complete Article HERE!

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