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


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!


For old folks left to die at Myanmar’s roadsides and cemeteries, these homes are their last hope


Cast aside “like rubbish” and turned away even by nursing homes, these elderly outcasts are given dignity at the end of life by volunteer groups outraged by their plight.


YANGON, MYANMAR: There she lay, on the ground in the darkness of night, moaning in pain as rats – drawn to the smell of blood from the lacerations on her body – nibbled at her wounds.

The elderly woman had just been involved in a road accident. But instead of getting help, the driver had abandoned the woman next to a rubbish dump by the road to fend for herself.

Daw Khin Ma Ma said her stomach churned at the sight of the battered old woman who was eventually conveyed to her nursing home. “Her rib bones were broken, some of which had pierced her lungs. We could see a hole in her back that had been gnawed on by the rats,” she said.  

“I’ve never seen such a terrible case before.”

The woman died some six months after arriving at the home.

Daw Khin is the vice-president of Twilight Villa (See Sar Yeik), a nursing home in Myanmar which takes in abandoned sick elderly citizens whom other homes turn away. This horrifying episode is just one example of why she is so dedicated to helping this group.

Cases of seniors being left abandoned by families near markets, railway stations and even cemeteries are on the rise. “These grandpas and grandmas at our nursing home have been cast aside at hospitals and under bridges like rubbish,” she said with heat.

(LINK: Poverty forces families in Myanmar to ditch their elderly)

Twilight Villa is tucked in a quiet corner surrounded by thatch and bamboo houses, an hour’s drive from downtown Yangon.

It started out with just eight senior citizens housed in a one-storey building in 2010, but today, it operates out of a modern four-storey building that includes an intensive care floor, courtesy of generous donors.

The home currently has capacity for about 70 people, but there are 50 more on the waiting list. It takes in only those over 70 years of age who are ailing and without any traceable family.


Daw Khin is among a small but growing number of individuals and local non-profit organisations that have stepped forward to help the sick elderly who are in the last years or even months of life.

They have no training in nursing nor geriatrics, driven only by their passion to provide this group with dignified end-of-life care.

Daw Khin, a criminal lawyer by profession, co-founded Twilight Villa along with local philanthropist and award-winning writer Daw Than Myint Aung in 2010, after they found that nursing homes were unwilling to accept the sick elderly.

She said that some of these seniors are referred to them by the police, and they have little memory of their identities.

“Sometimes in the pocket of their jacket, there would be a note with just their name and age, such as Daw Pu, age 80. That’s all. When we ask them more, they can’t remember anything else,” she said.

Photos of volunteers with the residents at Twilight Villa.

Daw Khin fumed at how some caregivers go to great lengths to abandon these seniors – even using different modes of transport to ensure that they can’t find their way home.

“They might be transported in a car, then a trishaw, and then by ferry to the other side of the river where they’re abandoned,” she said.

Some are dumped because they had suffered a stroke or some mental illness. “When we ask them where they live, they would say, ‘a market is near my house, and I have little grandchildren’. If they could remember more details, we would surely send them back,” she said.

Then there are those like 87-year-old Daw Kyi Kyi, who was referred to the home after her husband and two sisters died. She has no children.

She wakes at 5am every day and spends her time praying and meditating. The company of friends and the staff at the home help to relieve any loneliness.  “I am happy here,” she said. “I can live peacefully; it’s like living in heaven with all my friends.”


Like Twilight Villa, the group Save The Aged focuses on the sick elderly who have nowhere else to go.

It was started by a group of 15 young, public-spirited volunteers who were so moved by their plight, they took to the Internet and social media to rally help for them.

So successful were they that – for a country with a low Internet penetration rate – they managed to raise enough funds solely through social media to open a nursing home in 2015.

Save The Aged volunteers Hnin Hnin and Phyo Thiri

Volunteer and accountant Daw Phyo Thiri said: “There were other organisations such as Save the Children but there were none that looked after the elderly. We were inspired to create a group to help those that we had met.”

They started out by repairing the homes of these old folks and helping them with expenses such as for food and medicine, as well as conveying them to the hospital when they were sick. They had no donors initially, and most of their expenses were borne by the volunteers.

With no physical office, they communicated via WhatsApp and social media, posting pictures and videos of their activities on Facebook. As their digital presence grew, they managed to get donations and more volunteers, especially among the young.

Save the Aged currently provides care and accommodation to around 25 homeless elderly, all aged above 65.

Resident Daw Kyi Kyi Khin, 85, was living alone and surviving on occasional donations when some Save The Aged volunteers brought her to the home.

She said: “Now I live peacefully here and I have nothing to worry about. They treat us like their own parents or grandparents.”


However, funding continues to be an issue for these NGOs – a problem made even more acute in a poor country like Myanmar.

Daw Phyo said Save The Aged would like to do more but is limited by the lack of resources. The NGO relies solely on donors, who include Myanmar nationals overseas in countries such as Singapore, South Korea and Australia.

When they were building the home, they had to pay for the construction in instalments – and at one stage, they ran out of funds. Thankfully, another appeal for funds online managed to raise enough to complete the project.

“We only have enough funds to run the day-to-day operations,” said Daw Phyo. “For the longer term, we would like to expand, to buy new land and build new homes. We would like to support the elderly even more, and we are looking for donors.”

Twilight Villa, too, relies mostly on public donations.

The government’s Social Welfare Department provides the organisation with 25,000,000 kyats (S$26,000) a year in subsidies but they can only use it to buy rice.

Daw Khin said she would prefer to have more flexibility with the subsidy, for medical supplies or to pay their employees.


But more than that, she would love to see the day when there is no more need for homes such as hers.

She cited the example of one home for the aged she knows of which – curiously enough – has no seniors living there.

The residents in that village in the state of Kachin have learnt to value and respect their elderly folks for the part they have played in society, and so everyone chips in to take care of them in their twilight years, she said.

“If a family is too poor to take care of an elderly person, they will bring that person to another family who will take care of him or her. The whole village takes care of the elderly. That’s why there is no old person in the home for the aged.

“This is excellent. We need this to be the situation in every family,” she said.

Complete Article HERE!


A Death in the I.C.U.



On a recent night, I watched a man with terminal cancer die in the intensive care unit.

He was intubated. Meds ran through intravenous catheters in his bruised arms. Outside his room, alarms beeped. On the face of it, this death was precisely the kind we are told to avoid. But I think that for him, the I.C.U. was actually a good place to be.

My patient had thought he was healthy until a few months before, when the cough that wouldn’t go away turned out to be cancer in his lungs. Chemo slowed it down, but there would be no cure, his doctors told him. He was 75, and the cancer had spread to his lymph nodes and bones.

But he was living at home, eating the foods he liked, chatting with his wife. He went along that way until one day he spiked a fever and his cough worsened. The doctors in the emergency room sent him up to the I.C.U. And there we were, standing around the bed, as his breath grew ragged, wondering whether we could make him better.

Maybe with a few days of antibiotics, we could get him back home. Maybe. If we were to push ahead, with the hope that he would improve, he would need to be intubated. I turned to his wife.

She knew that he didn’t want to linger in a machine-enabled purgatory. But he would choose to undergo our interventions if there was a chance he could get well enough to return home, to be with her and the family, for whatever time he had remaining. We would take the chance.

I called the anesthesiologists. My patient’s wife held his hand as they sedated and paralyzed him so that they could place a breathing tube down his throat.

And with that, a man with a terminal illness ended up in the I.C.U., intubated, maybe dying. We know the numbers. More than 80 percent of people say they would prefer to die at home, and yet more than half of them die here in the hospital, surrounded by noise and strange smells and tubes and machines.

It’s a message that I continue to hear: Dying in an I.C.U. is a bad death that occurs when communication and understanding break down, while dying at home is a success. There is some truth to this. I have seen many men and women, bald and withered and suffering, tethered to machines that serve only to prolong an end that is inevitable.

But to cast an I.C.U. death as the negative outcome of poor communication and decision-making is too simple. Intensive care at the end of life is very often fluid, our treatments and decisions nuanced. Consider another patient, a frail man in his 80s, also with lung cancer, whose oncologist had told him he had maybe a month, at most. As his breathing grew more labored, he ended up in the I.C.U. We could not cure him — his doctors knew that, and he did, too. But perhaps we could help. We supported his breathing with high levels of oxygen, while we drained the fluid around his lung and gave him intravenous diuretics. We subjected him to the stress of the I.C.U. and a procedure, yes, but his breathing improved, not enough for him to go home again, but enough for him to be able to return to the general medical floor of the hospital. Some might argue that his story exemplifies what is wrong with our system, an example of an invasive, resource-intensive intervention in the last few weeks of life. And yet, seeing him sitting up in bed and able to take a deep breath, I considered his treatment a success — even if it bought him only days.

A procedure or an I.C.U. stay at the end of life can be a gamble. There are times when it ends the way we hope, with a treated infection, a return home. But there are times when it does not, and often, we do not know what is possible from the start. So we explain this uncertainty, and we continue to evaluate new treatment decisions with patients and their families in the context of their goals. And when the burden of disease grows too great, with further interventions more likely to cause harm than benefit, our focus can shift toward comfort. Navigating that shift is part of our training, too.

There my 75-year-old patient lay, intubated in the I.C.U. At first, the antibiotics seemed to be working, and he seemed to be getting a little bit better. We told his wife this, and she looked hopeful. But a few days passed, and then a week. He could not breathe without the ventilator. In a small conference room off the I.C.U., we told his wife that we were sorry. We had treated the pneumonia but because of the cancer, her husband’s lungs were too weak to recover. He was not going to get home. But we could maintain his dignity here, in the I.C.U., as he died. We promised her.

That night, we shut off the monitors inside his room. The screens went dark. My patient’s nurse increased the dose of his morphine drip. The respiratory therapist stepped in and removed the breathing tube. My patient breathed quickly for a moment, a little gasp, and then the morphine hit him and his breaths quieted.

We brought in his wife and two children, who gathered by the bedside. We slid shut the glass doors. From outside the room, I watched them stand there. I watched the monitors that remained on outside the room, holding my own breath as my patient’s heart rate slowed, then stilled completely. Inside his room it was quiet. There were no alarms. Through the curtains, I saw the shadow of my patient’s wife as she hunched over and began to cry, and her daughter leaned over to hold her.

And that was it. A man with metastatic cancer had died in the I.C.U.

Complete Article HERE!


How to Help an Elderly Parent Deal With the Death of a Spouse



By Michael Lewis

Velta Lewis died the morning of May 15th in the arms of her husband in the home they had purchased upon retiring three years previously. Her death, nine months after the diagnosis of lung cancer, occurred shortly before the couple expected to celebrate their 52nd wedding anniversary during a two-week trip to Paris. My father was devastated. Over the following weeks, I would find him sitting alone in their darkened family room – no television, no radio, no conversation to break the silence – staring with red-rimmed eyes into the past, trails of tears upon his cheeks.

If you have experienced the death of a loved one, you understand how grief can stun, even take you to your knees. In the midst of your own pain, it is easy to forget others who suffer. However, in the case of a parent whose spouse has died, it is at this time that your strength and compassion is most needed.

Dealing With the Death of a Spouse

Members of the Greatest Generation were no strangers to death. My dad had experienced the passing of his grandmother as a young boy, and witnessed her body resting in the parlor of their house for final viewing, as was the custom in those days. He had spent almost a year in Europe during World War II, losing buddies to the ravages of battle. In the ensuing years, he and my mother buried parents, relatives, and friends, the funerals becoming more frequent as they grew older. They were religious people, neither fearing death, sure of their place in eternity.

But generally, the natural order of life is for husbands to go first, not wives. They had worked and saved over the years, expecting to enjoy 5 to 10 years of travel and seeing grandchildren before Dad’s time to go. Mother dying first was unnatural in the grand scheme of things – unlikely, but not impossible. In fact, according to the U.S. Census figures in 2012, husbands are 3.2 times more likely to die before their wives, with 36.9% of women older than 65 widowed compared to 11.5% of men over age 65 who are widowers. To my father, all of their shared preparations for their final days were suddenly pointless.

Even when husbands die first, the toll on the surviving wife can be equally overwhelming, particularly if the death is unexpected. The survivor loses not only a mate, but a long-term partner, an everyday companion, and, commonly, a caregiver. Grief and sorrow as well as guilt for being a survivor are common feelings and take time to reconcile. Many survivors report a deep sense of loneliness and isolation that can take months, even years to overcome; the closer the marital relationship, the more depressed the surviving partner is likely to be.

Their grief can sometimes have fatal consequences if untreated. A 2013 study by the Harvard School of Public Health found that a surviving spouse over the age of 50 has a 66% increased risk of dying within the first three months of the spouse’s death. Physicians often refer to the “broken heart syndrome,” or stress cardiomyopathy, the result of a sudden stress like the unexpected death of a loved one.

If the couple is ill or frail, the consequences of the death of one of the partners is particularly distressing for the survivor. Together, they can live independently by relying on each other. When one dies, the other may not be capable of living alone, and must cope with the loss of their spouse and, possibly, their independence.

Ironically, surviving spouses who are better off economically are likely to be more depressed. According to Rutgers Professor and sociologist Deborah Carr, “Those who own a home may do worse because they have the added strain of caring for a house. They may be more socially isolated, lonely, and even afraid of living in a home alone, compared to surviving spouses who live in apartments and have neighbors close by.”

Since many elderly couples divide the tasks of everyday living – for instance, one may cook meals and mow the lawn, while the other pays bills and handles home repairs –  the loss of one of the partners may leave the other unequipped or unable to add the new tasks necessary for everyday existence. For instance, Jackie Buttimer of Bethesda, Maryland had never balanced a checkbook and rarely used a computer before her husband of nearly 50 years died in April 2010. “It’s a huge learning curve, and I had never lived alone,” says Buttimer.

The Role of Children and Friends

Losing a partner affects older adults in multiple ways: Some may continue to function without appearing to be excessively affected, while others are incapable of completing the smallest task. At the same time, you will be grieving for the loss of a mother or father and perhaps recognizing your own mortality. It is important to handle your own grief and fears, but remember that losing a mate is not the same as losing a parent. If possible, your priority should be to comfort your parent first, recognizing that, at times, you may need to withdraw to grieve and recharge.

Do not be reluctant to ask for help from other family members or friends. Many people are willing to help, but hesitate to intrude during this very emotional time. They need your guidance to help in ways that are beneficial, whether it is providing meals, performing needed household duties such as washing clothes or mowing the lawn, or spending time with your parent in conversation and consolation.

There is no definite mourning period or average time to return to “normal.” People do not easily get over their pain; they eventually learn to cope with it as time softens the loss. Some parents may want to talk about the deceased, while others avoid the subject, especially if the death was painful or unexpected. Take your cues from your parent.

Shortly after my mother’s death, my father and I took a week-long automobile trip to visit the locations of his childhood, the hours in the car filled with his recollection of the memories of their life together. We laughed, we cried, and we both felt better. Remember that grief will usually resurface in the years ahead at holidays, birthdays, anniversaries, and any special family days. If and when emotions resurface, it is important to acknowledge and share the feelings.

The Immediate Aftermath of Death

Even with well-planned, predetermined arrangements, there are a number of responsibilities that require attention following a death. The surviving mate may be overcome with grief so these duties must be completed by a child or another representative of the family. They include:

  • Notification of the Proper Authorities. If the death occurs at home, as in my mother’s case, a hospice representative and a physician are required to pronounce death and dispose of any restricted pharmaceutical drugs remaining unused. If the death was unexpected, a coroner or medical examiner may be required at the scene. The medical personnel typically make arrangements to transfer the deceased to the mortuary of choice.
  • Making or Reviewing Funeral Arrangements. In many cases, arrangements have been made concerning the disposition of the body (burial or cremation), burial sites, and funeral services. The arrangements need review, and occasionally change to accommodate the last wishes of the deceased or surviving spouse. This is a particularly emotional time which some unscrupulous funeral directors may attempt to exploit by up-selling to more expensive caskets, extensive flower arrangements, or elaborate tombstones. The best counsel is to follow the wishes of the deceased as close as possible, assuming the arrangements were made under less emotional circumstances.
  • Contacting Family, Friends, and Clergy. Family members, often spread across the continent, need to be contacted and informed of funeral arrangements, with time between the death and service for those to travel if necessary. Close friends should be contacted personally with the request that they contact others who might wish to pay their respects. Churches often respond immediately when noticed of a member’s death with offers of meals and other help.
  • Notifying Legal, Financial, and Government Authorities. While these duties can be delayed until after the funeral and receipt of death certificates, the Social Security Administration should be notified so that monthly benefits can cease and survivor’s benefits can be initiated, if available. Life insurance claims should be filed. Institutions which provide jointly-owned bank accounts, credit cards, or other property need to be notified and provided with proper documentation to transfer ownership as dictated by the will of the deceased. If an attorney has not been previously involved in estate planning, seeking counsel to proceed most efficiently to probate any will and settle the estate may be wise.
  • Delaying Payment of Medical Bills for the Deceased. In the weeks following my mother’s death, my dad was deluged with medical bills relating to my mother’s care and death, even though the costs had been incurred in her name and covered by Medicare. Information systems in the medical industry are notably inefficient, outdated, and inaccurate. As a consequence, many providers continue to bill my deceased mother, even though accounts had been previously paid or were not legally due. My father, wishing to honor my mother’s good name, would pay the accounts, being unable to determine whether the balance was legitimate or not. In the event of a death, it is wise to delay any medical payments for the deceased for a minimum of three months so that billings and collections can be properly recorded and amounts owed properly reconciled.

Depending upon the planning preceding the death, the ability of the survivor to handle legal and financial matters, and the complexity of the estate, there will almost certainly be additional cases where the help or guidance of a child to protect the interests of the surviving parent will be necessary.

Signs of Continuing Grief in the Elderly

Many people appear to quickly bounce back after a tragic event, but appearances can be deceiving. According to the American Hospice Foundation, some signs that your parent is still grieving include the following:

  • Forgetfulness. Missing appointments, locking keys in the car, or mailing unsigned checks with bills are all signs that your surviving parent may have difficulty focusing. Be patient and suggest written reminders to stay focused.
  • Disorganization. Taking longer or failing to complete one task before beginning another is often seen in grieving adults. Written schedules can help.
  • Inability to Concentrate. Grief causes the mind to wander, so reading a book or watching a television show can be difficult. Be especially alert if your parent continues to drive an automobile or operate dangerous machinery.
  • Lack of Interest or Motivation. Your parent may question the purpose of life or why any effort is worth doing. Listen to them, express love and support, and keep trying to get them involved in something beyond their immediate environment.
  • Fascination With Death or the Hereafter. While it’s natural to think about it following a death, a fixation on death combined with depression can lead to suicide. Involve a therapist immediately.

Specific Problems That May Arise

While most people gradually recover from the death of a long-term spouse, there are unique problems and circumstances that can complicate or extend the healing process. As their child, you should be cognizant of the potential areas which can cause obstacles and seek to minimize them.

1. Loss of Independence

The death of a spouse emphasizes the physical fragility of the survivor. As people grow older, muscle strength declines, and problems with balance and gait appear. Neurological conditions such as Parkinson’s, high blood pressure, neuropathy, and vision problems such as glaucoma and cataracts can cause unsteadiness and falls, and may require certain medications. A pair of people living together can look after one another and call for help when necessary – but a person living alone lacks that security.

If your elderly parent wants to live alone but may be subject to falls, consider improving the physical environment of the home by removing loose rugs, installing railings on stairs, adding ramps, and putting grab bars in the bathrooms. Adding a home monitoring system may give you and your elderly parent peace of mind.

2. New Tasks to Learn

During the 50-plus years he was married, my father rarely wrote a check, paid a bill, or determined which investments were made in the family’s retirement accounts. In other families, the wife may have let her husband take care of all financial matters. Some surviving partners do not know how to cook or to drive a car.

When a spouse dies, the survivor is required to assume new responsibilities, which can be overwhelming. Fortunately, technology has become increasingly simple, so that even the most unfamiliar can learn basic tasks necessary to everyday life. Encourage your parent to sign up for community courses for the elderly in local colleges, universities, local chapters of the American Association for Retired Persons (AARP), or senior centers. They may find friends with common interests and learn new skills that will allow them to connect with a broader world.

3. Financial Complications

Problems with the level or management of assets can arise after the death of a spouse. For example, a husband and wife typically draw two Social Security checks each month. With the death of one spouse, income is reduced. Annuity or retirement plan distributions may also be changed. In many cases, the deceased spouse may have been responsible for making day-to-day management decisions in the family retirement portfolio, expertise that is no longer available with the passing of the partner.

Depending upon the will and wishes of the dying spouse, control of the assets may rest solely with the survivor, potentially complicating efforts to protect their financial interests. Unfortunately, surviving elderly spouses are popular targets for con-men, crooks, and unscrupulous investment salesmen. If you have suspicions that your parent is unable to rationally make investment decisions or under the influence of those who do not have his or her best interests in mind, seek legal help immediately.

4. Loneliness and Depression

Intermittent periods of depression and loneliness invariably accompany the death of spouse. In fact, healthy grieving is a process that can last for months or years. However, as time goes by, the periods of loneliness and depressions usually become shorter while the periods between depressions extend. In some cases, however, months can go by without any sign of improvement. Mental professionals call this condition “complicated grieving.”

Signs of complicated grief include the following:

  • An inability to accept that death has occurred
  • Frequent nightmares and intrusive memories
  • Withdrawal from social contact
  • Constant yearning for the deceased

Grief has physical consequences – loss of appetite, trouble sleeping, headache, fatigue, muscle tension – which generally result in decreased exercise, deficient diet, and an over-reliance on medication. If your parent seems to be stuck in a continuing cycle of depression, seek psychological help and encourage them to talk to friends or a spiritual advisor.

Remember to Take Care of Yourself

Trying to help your parent recover from death-related grief is akin to rescuing someone from drowning. You may be struggling with your own depression and feelings of guilt and regret. If you find that you cannot help your father or mother without sacrificing yourself in the process, ask for help from other family members, a friend, or a mental health professional.

Take time for yourself and your immediate family and seek a support group if necessary. Be sure you maintain a good diet, keep exercising, and get plenty of sleep. And focus on the good memories of the parent who is gone as well as the one who survives. Remember that time will eventually lessen your pain.

Final Word

My father eventually followed my mother in death. He was unafraid, even excited, since he believed that his wife was waiting on the other side, and the two would spend the rest of eternity together.

While helping my dad through his grief at my mother’s passing was at times inconvenient and frustrating, I have no doubt that our relationship deepened and strengthened as a result. If the occasion arises where you are called to help one of your parents after the death of your other parent, welcome the opportunity to share your grief and express your love. Like births, death can show us the joy of life and family.

What other tips can you suggest to help a parent deal with the death of a spouse?

Complete Article HERE!


At 83, this patient advocate is still passionate about end-of-life care in Maine

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area -- first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area — first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

By Meg Haskell

EDDINGTON, Maine — Back in the 1980s — not all that long ago, really — hospice was essentially unknown in this country. Death, fearsome and mysterious, was a taboo topic in the health care setting. Doctors, trying to live up to their omnipotent reputations and avoid lawsuits, employed all possible measures to save lives, even when there was little or no hope for a cure, even at the natural end of a long life.

Patients with a terminal diagnosis often were not even told they were dying. They were hospitalized and endured painful, exhausting and expensive interventions instead of being provided with dignity, comfort and support in their final days. Because the focus was on cure, not comfort, their pain and anxiety often were poorly managed. Family members were also kept in the dark and found little support in preparing for loss or responding to grief.

Much has changed over the course of the past few decades. All over the country, hospice care is now a welcome, accepted and affordable model for providing comprehensive comfort and support to the dying and their loved ones while also cutting unproductive spending in the health care system.

While many factors have played into the rise of hospice nationally, no one has been more instrumental in bringing about this critical change in the northern half of Maine than area resident, registered nurse and passionate hospice advocate Patricia Eye.

Eye, a native of Machias who trained at Eastern Maine General Hospital School of Nursing, spent years traveling the globe in connection with her then-husband’s diplomatic career. She found ways to practice nursing wherever they were posted. She had encountered a hospice-like philosophy of care in other countries and while working at a children’s hospital in northern Virginia. It was in Virginia, too, where she first encountered the teachings of end-of-life advocate Elizabeth Kubler-Ross, whose revolutionary 1969 classic, “On Death and Dying,” sought to normalize death and outlined a five-stage process of healthy grieving.

“She was speaking my language about end-of-life issues,” Eye said during a recent conversation at her home. “That’s when I knew what I was going to do with the rest of my life.”

A patient advocate at heart

When Eye returned to the Bangor area in 1981, she encountered a health care community that had barely begun to grapple with end-of-life issues. A group calling itself COPES — no one seems to remember now what the acronym stood for — was meeting at Eastern Maine Medical Center, trying to organize a nonmedical, all-volunteer system of home-based support for dying patients. Beyond that, there was silence on the issue of hospice.

But by the time Eye semi-retired last year, there were at least five agencies delivering Medicare reimbursable hospice services in the Bangor area, helping thousands of residents of all ages live out their days and die peacefully in their homes. Eye has been a persuasive presence throughout this growth period, providing direct patient care, helping organize several of the agencies, working toward all-important Medicare certification and, in 1994, establishing her own agency, New Hope Hospice in Eddington.

“Some people’s personalities just resonate at a level that is deep and reflective,” Kandyce Powell, the longtime director of the Hospice Council of Maine, said. She’s known Eye professionally “for so long I can’t even remember,” she said. “Pat’s heart and soul have always been sensitive to the deepest needs of the people she cares for.”

Despite Eye’s soft-spoken ways and gentle demeanor, Powell said, she has been a determined advocate for the business-side growth of hospice, from the all-volunteer COPES model to a more structured and regulated system that is now paid for and supported by Medicare, Medicaid, veterans benefits and most private insurances. That transition has been critical to the expansion and consistency of hospice care across Maine, Powell said, and its availability to all Mainers regardless of ability to pay.

At the bedside, in the conference room and in policy debates, Powell said, “Pat has always been an advocate, ethically and morally, for the right to die. She has always done what was best for her patients.”

What is hospice?

Hospice, a longtime option in Great Britain and some European countries, is an end-of-life model that promotes the comfort and dignity of terminally ill patients over the possibility of cure. Originally considered an alternative for the very elderly and individuals with incurable cancer, hospice care is now available in this country for patients of all ages with any kind of untreatable, terminal illness.

Hospice provides highly individualized medical, emotional, spiritual and practical support for patients with six months or less to live and for their families and loved ones. Services, both paid and volunteer, are coordinated by the providing agency and delivered in the home, in a residential facility such as a nursing home or in a specialized hospice residence. Additionally, some hospitals set aside space for the delivery of hospice services to inpatients who cannot be adequately cared for at home.

In Maine, approximately 25 agencies deliver home hospice services, including medical and nursing care, clergy visits, social services, nutritional advice, visiting companions and more. Agencies also deliver equipment such as hospital beds, walkers and bedside commodes. Most agencies in Maine are nonprofit. Many are affiliated with larger health care systems; a few, such as New Hope Hospice, are independent.

In addition, there are four residential hospice “homes,” in Auburn, Scarborough, Rockland and at the Togus VA Medical Center near Augusta. A fifth hospice home will soon be built in Presque Isle. Greater Bangor doesn’t have one.

The artist's rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

The artist’s rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

An ‘evangelist for hospice’

It was not always like this, according to Sr. Mary Norberta, the former president and CEO of St. Joseph Healthcare in Bangor. Now retired and living in Connecticut, Norberta recalled that the Catholic organization in the early 1980s investigated the possibility of establishing an inpatient hospice unit at St. Joseph Hospital. Without a reliable funding source, it couldn’t work.

“We decided a home-based volunteer program would be more financially feasible and reach more people,” she said. Eye, who had been working on the cancer unit at EMMC and meeting with the COPES group there, moved over to St. Joseph to help set up the home hospice program.

“Pat and [social worker] Sr. Mary Romuald were the pioneers,” Norberta said. “They would trade off night shifts to sit with patients in their final moments.” In addition, the two recruited and trained a dedicated cadre of volunteers to help support patients and their families.

In those early days, Eye was persistent in telling patients the hard news of their terminal status, sometimes against doctors’ wishes. Patients must understand their condition in order to enter hospice care.

“She had tremendous compassion and she was never pushy about it,” Norberta said, “But she was always able to tell people the tough things they needed to hear.”

Dr. Toby Atkins, a primary care provider in Bangor for about 40 years, was also part of the hospice startup at St. Joseph Hospital. He recalled that there was early confusion about the role of hospice workers, who, unlike home health nurses, aimed to keep patients home instead of sending them back to the hospital when their conditions worsened.

“The whole idea of the ‘do not resuscitate’ order was just getting developed,” he said, and some health workers, including visiting nurses and ambulance crews, refused to honor it. Atkins, who now serves as the medical director at Community Health and Counseling Services in Bangor, said Eye was key in educating doctors, nurses and other providers about the intent and the importance of the DNR order, which allows terminal patients to die naturally without the trauma of medical interventions aimed at “saving” them.

“Pat was a real evangelist for hospice,” Atkins said. “She got right into her patients’ lives and provided lots of support, lots of services.”

Still looking ahead at 83

In 1984, Congress directed the federal Medicare program to pay for hospice care. With guaranteed funding — and no small amount of regulation and oversight — provider agencies have since blossomed across the country. Hospice, not long ago a controversial, hard-scrabble, grass-roots effort, is now a well-established and respected player in the national healthcare system.

These days, Eye lives with her son John, 52, and a menagerie of geriatric dogs and cats in a comfortable old farmhouse in Eddington. At 83, she remains active in her chosen field, providing community outreach and clinical support for New Hope Hospice.

She has weathered some deep sorrows. She lost her 58-year-old daughter, Connie, to cancer last year. Another child, her son Lance, suffered with mental illness and took his own life, years ago, at age 28. Her marriage ended in divorce in 1985.

But she has blessings, too. She had a leaky heart valve repaired recently but is otherwise in good health. She is close with her other daughter, Kitty, a nurse who works locally in long-term care.

She enjoys her life, her family, her home and all the pets — “They’re all rescues and strays,” she said — who share it with her.

And she continues to love her work. “To do this work, you cannot help but be close to God,” she said.

Thanks to all the traveling she did in the first half of her life, she feels at ease with many world religions. “It doesn’t matter. We all have the same god,” she said. “Religion really just gets in the way.”

If she has a burning wish, it is this: to see New Hope Hospice build the residential care facility she envisioned when it first opened for business.

“My theory is that every community should have a small, inpatient hospice home,” she said firmly, “even if it’s just two beds.”

She produced an architect’s drawing of an eight-bed, bungalow-style home. “We already own a lovely piece of land for it,” she said, brushing off the dust. “ And there’s such a need in this area. It’s just a matter of finding the money.”

And with that, it’s clear that nurse Pat Eye is still advocating for her patients, still intent on identifying and serving the end-of-life needs of Eastern Maine.

Complete Article HERE!


Dying woman picks road trip over chemotherapy


By Annie Flury

Norma and her son Tim

Norma and her son Tim

When 90-year-old Norma Bauerschmidt was diagnosed with terminal cancer, her immediate instinct was to refuse treatment and instead find a more positive way to spend her final days.

So she embarked on the road trip of lifetime and unwittingly became an internet hit along the way, when the Facebook page about her travels started attracting more than 440,000 followers.

Ramie Liddle and her mother-in-law Norma Bauerschmidt

Ramie Liddle and her mother-in-law Norma Bauerschmidt

Mrs Bauerschmidt, from Michigan, spent just over a year on the road with her son Tim and his wife, Ramie Liddle, in their motor home, before her death last week.

They had traveled more than 13,000 miles (20,900km) and visited 34 states.

 The family travelled more than 13,000 miles in their motorhome

The family travelled more than 13,000 miles in their motorhome

The adventure began in July 2015, when, after a routine scan, Mrs Bauerschmidt’s doctors told her she had terminal cancer.

It was just two days after the death of her husband, Leo.

Her daughter-in-law said: “Tim and I had lived on the road for a couple of years, and when her husband passed we did what all families do and invited her to live with us.”

“She thought about it for about a minute-and-a-half and said, ‘Yes’. She was ready for an adventure.”


“One of the first things we did was buy a wheelchair for her, and that was her ticket to freedom,” said Ms Liddle.

“From that point, on we could go out and about on outings or do whatever she wanted.”

It was Ms Liddle’s idea to start the Facebook page Driving Miss Norma.

“It was just so my family would know where we were, but Norma was absolutely shocked when it took off,” she said.

Norma Bauerschmidt and her son Tim with a CBS camera crew

Norma Bauerschmidt and her son Tim with a CBS camera crew

Ms Liddle said they had travelled from place to place, staying anything from a day to a month depending on how they felt.

And as Mrs Bauerschmidt’s Facebook following had grown, they had started to get invitations to lots of events and gatherings – including an Atlanta Hawks basketball game and countless people’s homes for dinner in the evenings.

The family travelled across the country harvesting hazelnuts in Friday Harbour in Washington, taking part in the St Patrick’s Day Parade in Hilton Head Island, South Carolina, visiting Yellowstone National Park and touring the Massachusetts coast.

They took a trip underground to visit the Consolidated Gold Mine in Georgia and Mrs Bauerschmidt even managed to fulfil one of her lifetime ambitions when she took a ride in a hot air balloon in Florida.

“In the last year, we have seen the best of the best of the people in this country,” she said.

Life on the open road

Life on the open road


Ms Liddle said her mother-in-law had been a very humble woman with no grand needs, but she had had a very clear idea about what had been important to her.

“She had a very happy last year, and was a very simple woman who had never had any attention in her life,” she said.

“And that’s the beauty of this story – she was just herself.”

Complete Article HERE!


How dementia makes it harder to offer end-of-life comfort

Pauline Finster, who barely speaks anymore, is receiving hospice care at an assisted-living facility. Meanwhile, gangrene is spreading across her right foot.

Pauline Finster, who barely speaks anymore, is receiving hospice care at an assisted-living facility. Meanwhile, gangrene is spreading across her right foot.

By Rachel Bluth

Dementia took over Pauline Finster’s 91-year-old mind long ago, and she may die without having another real conversation with her daughter.

After Finster broke her hip in July 2015, Jackie Mantua noticed her mother’s speech ebbing until she said only “hi” or that she felt fine. Mantua last heard Finster speak six months ago.

Finster’s hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won’t look at her mother’s right foot, where the dead tissue is creeping from the toes to the heel.

She has instructed the staff at the AlfredHouse assisted-living facility in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to curb the gangrene’s discomfort.

Is that enough? It’s really all she can do at this point, Mantua said.

Finster began hospice care at the beginning of the summer. Pictures of her and her husband as a young woman are the last reminders in her room of her life before dementia.

Finster began hospice care at the beginning of the summer. Pictures of her and her husband as a young woman are the last reminders in her room of her life before dementia.

Hospice’s purpose is to ease a dying patient’s pain at the end of life and improve the quality of that life. But what’s to be done when a dementia patient in her waning days can’t communicate about her pain or help identify the cause? Or when that patient resists taking medications?

All those concerns can be troubling for relatives caring for loved ones with dementia and in hospice care, according to a recent study in the American Journal of Alzheimer’s Disease & Other Dementias.

Families often describe a cancer patient’s last months as stressful but meaningful. That isn’t the case with dementia patients because the disease changes the patient’s personality and causes behavior issues, according to George Demiris, one of the study’s authors and a professor of biobehavioral nursing and health systems at the University of Washington’s School of Nursing in Seattle.

Caregivers who took part in the study said they worried that their loved ones were in pain but were unable to properly express it — and that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.

Multiple participants described feeling frustrated and defeated by patients’ cognitive difficulties and changing emotions, the study reported. Some described the patients as “prisoners” inside their bodies.

Helping a dementia patient in pain can be challenging for hospice workers, too.

Previous research found that patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.

Other research has found that hospice nurses frequently asked relatives to interpret patients’ “pain signals.” For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized that his wife was in pain by observing how she squeezed the hand of a home health-care aide while being given a bath.

Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.

Mantua said she watches her mother’s face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.

Recently, Mantua said her mother has been acting “strange.” Instead of her usual vacant but happy smile, Finster looked at her daughter with a “horrified” expression. Mantua told the hospice chaplain that it looked as though her mother had seen the devil.

The cause?

“You have no idea, because she can’t say anything,” Mantua said. “I was saying, ‘What’s wrong? What’s wrong?’ and she’s just looking at me like crazy.”

Finster has had dementia for 10 years. She has spent most of that time in facilities, moving from independent living to assisted living to memory care.

Mantua has felt some of the frustration that other caregivers of patients with dementia experience. Three or four years ago, when Finster still had a phone in her room, she sometimes called her son Les, Mantua’s older brother, 10 times to leave him the same message — that people were coming into her room and stealing her food. She simply forgot that she had called before.

Finster’s years of cognitive decline have taken a toll on Mantua and her family.

“You get to the point you want them to die because it’s hard,” Mantua said. “It’s hard to deal with. It’s a very helpless feeling.”

Now 53, Mantua is the mother of three adult children and the grandmother of twin 5-year-old boys. She said she doesn’t have the patience or natural caretaking abilities to tend to her mother full time.

It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study that Demiris helped write.

“Caregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,” the study said.

For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, Demiris said, which “complicates the caregiving experience.”

Finster isn’t aggressive anymore. Mantua remembers when the dementia made her mother paranoid and angry. She was once so combative, the staff at her former assisted-living facility wouldn’t try to feed her unless Mantua or her brother were present.

The decision to begin hospice care wasn’t easy for Mantua or her family. She said it feels as if her mother is already gone.

There isn’t much for Mantua to do when she visits her mother. She chatters as Finster dozes, cradling a baby doll that is always with her. A staff member regularly changes the doll’s clothes, which amuses Mantua.

For now, she keeps driving an hour once every other week from her home on Maryland’s Eastern Shore to Finster’s room in Rockville, where they wait for the end together.

Complete Article HERE!