The Painful Choices End-of-Life Brings for the Caregiver


by Kay Bransford

Caught off guard

The final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.

Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.

I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.

Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.

In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.

What’s wrong with dad?

In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.

The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.

Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.

Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.

Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.

Deciding what comes next

Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.

Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.

Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.

It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.

We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.

We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.

Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.

For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.

Living with the loss

The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.

I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.

My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.

During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.

I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Helping mom adjust

We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.

Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.

I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.

We needed a community with:

  • scheduled activities that my mom would enjoy
  • active reminders about upcoming activities or events so my mom wouldn’t miss out
  • a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
  • community cues to help mom recognize how to get to her apartment

Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.

Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.

We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.

It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.

Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.

She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.

Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.

Saying goodbye to mom

In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.

Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.

When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.

When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.

The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.

She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.

It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.

Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.

When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.

Learning to live with my decisions

If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.

A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.

A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.

Life after caregiving

While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.

This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.

After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.

Complete Article HERE!


Most Families Wait Too Long to Utilize Hospice Care


Researchers say elderly people are in hospice care for an average of only 12 days. Why aren’t they admitted sooner?

by Gigen Mammoser

Hospice centers provide valuable end-of-life care for the elderly.

So, why aren’t more people using these centers?

The Medicare hospice benefit (MHB) was established in 1982 in order to give recipients access to high-quality care near the end of their lives.

But, new research in the Journal of the American Geriatrics Society states that those who utilize the service often do so too late.

The study included 562 individuals, all aged 70 and older with an average age of nearly 87 years.

Of these older adults, only 43 percent of them were admitted to hospice during their last year of life.

While hospice is available to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.

The authors say underutilization of hospice care can create a burden for healthcare workers, and result in patient suffering.

Why don’t people utilize hospice?

The reason why hospice care isn’t used more frequently is complex.

According to statistics from 2000, only 23 percent of Medicare beneficiaries who died were in hospice care at the time.

The MHB was initially offered for those with end-stage cancer. However, more and people have begun seeking hospice care for noncancer-related ailments.

The problem is that other issues, such as frailty and dementia, may be harder to discern when determining an individual’s eligibility for hospice care.

“It is well documented that the prognostication [predictability] for those patients with a noncancer diagnosis is more difficult and is a complicating factor for physicians and others who refer patients to hospice care,” said John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization (NHPCO).

Lead study author, Dr. Thomas Gill, a professor of medicine at Yale University, agreed.

“Cancer tends to have the most predictable course,” he told Healthline, “meaning it is generally easier to predict when someone with cancer is in the last six months of life than someone with another terminal condition.”

“The challenge is even greater for older persons since many die from a combination of different conditions and/or debility, none of which may meet criteria for hospice,” Gill added.

That gets even more problematic when you look further at the results of Gill’s research:

The most common conditions leading to death were frailty and organ failure, not cancer. However, hospice acceptance rates for frailty were the lowest, and for cancer the highest.

Waiting too long

Not only is care jeopardized by condition, but by duration of stay as well.

The median of 12.5 days spent in hospice indicates that even when individuals do utilize the MHB, it is at the last possible moment.

“A large proportion were admitted shortly before they died, which makes it difficult for hospice to optimize its benefits,” said Gill.

Hospice care offers a unique opportunity to individuals who are near death in that it is not intended to cure them.

It is strictly palliative, meaning it is meant to provide comfort and quality of life.

Benefits of hospice care, Mastrojohn told Healthline, include expert pain management, spiritual support, as well as social and physical activities, tailored to the individual.

Hospice also provides service to families through bereavement support to help them deal with the loss of a loved one.

“Hospice is a benefit delivered by clinicians who are expert in the care of those with serious, advanced illness,” said Mastrojohn. “It is my hope individuals would be more open to receiving hospice services so they can maximize the many benefits they need and deserve.”

Changing how hospice is viewed

While this new research helps to highlight the underutilization of hospice care, it does not provide crystal clear answers why.

However, the authors hope that their work will lead to better strategies for addressing those who need hospice care, and getting them enrolled sooner in a program, rather than waiting until the last moment.

But hospice care also represents a difficult dilemma for families, which may help explain why duration of stay is so low.

For some, putting a loved one in hospice care can sometimes be seen as a sign of defeat.

“Some patients and/or families might interpret hospice as ‘giving up,’ but this is clearly not the case,” said Gill.

Complete Article HERE!


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?

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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.

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