Month: October 2017

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De-Medicalizing Death

By Jessica Nutik Zitter

[T]here’s been an unexpected, and excellent, consequence to California’s new medical aid-in-dying law. For many terminally ill patients, immersion in the process of securing lethal drugs ultimately renders them unnecessary. How did this come about?

Passed by the California legislature in late 2015, the End of Life Option Act allows physicians to prescribe a lethal concoction of drugs to some patients with terminal illnesses who meet certain criteria. The law, commonly described as providing “medical aid in dying,” took effect on June 9, 2016. It stipulates only that the requesting patient be considered terminal (less than six months away from death), possess full decision-making capacity, and be physically able to self-administer the life-limiting drugs. Although the physician is obligated by law to inform the patient of alternative care options, such as psychological counseling or symptom management with palliative care services, there is no direct requirement that the physician arrange or provide them. In its barest form, the option can serve as a dispensary for life-ending medications.

California’s medical community was taken by surprise by the rapid passing of the law in late 2015. It came on the heels of the dramatic case of Brittany Maynard, a young woman with terminal brain cancer who elected to move from California to Oregon to access medical aid in dying under that state’s Death with Dignity Act. Hospital systems and physicians in California suddenly found themselves with an urgent need to rapidly formulate policies around this new right of patients. Some, such as the Catholic Health Systems, opted out on religious grounds. Others scrambled to put basic policies in place for patients who met inclusion criteria. And some institutions decided to put significant time and resources into supporting this new legal reality in the most comprehensive way possible.

One standout example is the University of California, Los Angeles (UCLA) Health Centers. After literally thousands of hours of discussion, the working group determined that the intake process for patients requesting medical aid in dying should be conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians. Dr. Neil Wenger, director of the UCLA Health Ethics Center, led the effort to create processes and infrastructure to respond to this law. “We wanted to be able to offer a service that doctors tend to gloss over,” he said, when asked why they chose to lead with talk therapy. The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

The intake questions explored goals of care, quality of life, and patients’ emotions around their impending deaths: Were they ready? What scared them? What made them anxious? Did they feel their lives were complete? What did they feel makes life meaningful? What decrements in quality of life are too great? What haven’t they said and to whom? Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

Ours is a culture that does not talk about death, even when it should be impossible to ignore. Despite the fact that 89 percent of people think that it is a doctor’s responsibility to discuss end-of-life care with their patients, in reality, only 17 percent of patients report having had such a conversation, according to a 2015 survey from the Henry J. Kaiser Family Foundation. As a doctor who practices both critical care and palliative care medicine, I have presided over thousands of deaths. Most of my patients have suffered with chronic illnesses for years: metastatic cancers, failing lungs, and progressive debilitation from dementia. And yet almost none of them have discussed their own death with their doctors, or even their families. Most have no idea that they are actually dying. In this culture that operates on a fantasy of immortality, with unrealistic promises made by television shows and advertisements, doctors see themselves as failures if they are unable to cure their patients. We physicians are trained to lead patients into battle after battle, into the next procedure or intervention, banking always on that magic pill or miracle cure.

This broad cultural unwillingness to acknowledge death results in a phenomenon I call the “End-of-Life Conveyor Belt,” where high-tech treatments are automatically attached to bodies as they progress through the stages of dying. As the baby boomers age and our treatment options blossom, more are being exposed to the suffering brought about by these protocols. The tremendous anxiety we see over loss of control is understandable. It is no wonder that people in many states have asked for, and finally won, the right to take back that control with a pill.

The effort by UCLA Health seems to be working. Placing highly trained psychologists and clinical social workers in the critical role of “first responder” to a patient’s request to hasten death has rendered many of these requests obsolete. In choosing this approach, UCLA is effectively “de-medicalizing” the experience of dying by prioritizing the need for deep reflection. In this way, the program provides patients with an option that doctors are not primarily trained for.

Patients requesting support to hasten their deaths are only a small subset of the population of the dying. They are in some ways canaries in a coal mine, their request for medical aid in dying is alerting us to the unmet needs of the wider population of dying patients. And what I am seeing is that our new legal responsibility to steward these patients responsibly through this rocky terrain will build practices and skills that will help all of those at the end of life.

Where goes California, thus goes the nation. California was the fourth state to legalize medical aid in dying and has since been followed by two more. And UCLA’s approach, with trained psychologists guiding patients through this tricky terrain, shows us the way. Let’s take advantage of this wave to take better care of all our seriously ill patients. And let’s make sure we give patients what they really need and hope that lethal drugs are always the last tool in the toolbox.

Complete Article HERE!

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Many kids dying of cancer get intense care at end of life

By Lisa Rapaport

[N]early two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.

Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.

“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.

“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”

Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.

For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.

Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.

Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.

Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.

One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.

“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.

“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.

Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.

“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.

With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.

“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.

“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.

Complete Article HERE!

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Washington State University considers composting human remains

A nonprofit group, the Urban Death Project, is seeking what it calls an ecological alternative to disposing of dead bodies by transforming them into soil to be used to nourish trees, flowers and memorial gardens.

By Taylor Nadauld

[W]ashington State University is acquiring the necessary approvals to test equipment to compost human remains at one of its facilities in what is bluntly being called the Urban Death Project.

Founded by Seattle-based designer Katrina Spade, the Urban Death Project is a registered 501(c)3 nonprofit organization that seeks to create an ecological alternative for the care of the deceased by returning their bodies to the earth through a process she calls “recomposition.”

Lynne Carpenter-Boggs, associate professor for WSU’s Department of Crop and Soil Sciences, said the project team is in an exciting yet boring phase of seeking necessary approvals to conduct such research on WSU’s campus.

Carpenter-Boggs and Rick Finch, manager of the WSU Waste Management program, both sit on the project’s technical advisory team, which consists of several other professors, morticians, anthropologists and authors from across the country.

The WSU Compost Facility has received modifications to its air quality permit from the Washington State Department of Ecology that would allow it to conduct a pilot study of composting human remains in part of the university’s existing 66-foot-long, in-vessel composter.

The approval order for the permit modifications will be issued in a week or two, Robert Koster of the department’s air quality program wrote in an email.

The facility, at the end of Dairy Road in Pullman, already converts animal carcasses and entrails, as well as animal bedding and manure, into compost.

Air emissions from the composting of human remains are not expected to change from those of composting other animal carcasses, according to a notice from the state Department of Ecology.

The project has also been approved by state and county offices for the state Department of Health’s Office of Environmental Health and Safety, said Marta Coursey, director of communications for WSU’s College of Agricultural, Human, and Natural Resource Sciences.

Still, several WSU scientific committees, the dean of CAHNRS and the WSU vice president of research must review legal and ethical issues, biosafety protocols and other aspects of the research before it can move forward. A verdict is likely to come in by the first or second week of October, Coursey said.

Were the project to move forward, the compost facility’s in-vessel composter would be divided into three 22-foot sections to isolate the study from other composting activity.

Koster said the department received no comments for or against the project during a monthlong public comment period that closed Sept. 15. The university published a legal ad about the comment period, but issued no news releases about it.

Complete Article HERE!

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When a ‘good death’ was often painful: euthanasia through the ages

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[T]oday, a primary goal of both movements aimed at care of the dying – palliative care and euthanasia – is to eliminate suffering. These are underpinned by the idea that a good death is a painless death. But it wasn’t always so.

The term “euthanasia” is derived from the Greek for good death, but it only began to be used in a modern and familiar way in the late 19th century. For centuries in Western societies, “euthanasia” referred to a pious death blessed by God.

The means of achieving a good death was set out in the enormously popular ars moriendi (art of dying) guides that offered prayers, attitudes and actions intended to guide the dying towards salvation. This wasn’t necessarily a painless process. Far and away the most reproduced image of good dying was Christ’s crucifixion.

The pain that could accompany dying was seen as punishment for sin and ultimately redemptive: a chance to transcend the world and flesh through imitation of Christ’s suffering. It was also a test of the compassion and charity of friends, relatives and even strangers.

The Christian injunction to minister to suffering meant visiting and caring for the dying were seen as communal duties. Children as well as adults were expected to offer physical and moral support to those who were gravely ill.

Doctors did not typically attend the deathbed. They did not have an obvious role in the central spiritual business of dying, but nor were they particularly associated with the mitigation of suffering.

Indeed, in the pre-anaesthetic era, doctors were more likely to be associated with the infliction of pain. Surgery, of course, was excruciating, but other now infamous “heroic” remedies (such as blistering, excessive bleeding and the application of caustic chemicals to the skin) were based on the belief that pain had healing properties and involved doctors deliberately inducing it.

In the 19th century, pain began to be seen as a discrete and aberrant physiological phenomenon. Both dying and suffering were increasingly medicalised. Doctors gradually took over from the clergy and family as carers of the dying.

At the same time, the word “euthanasia” took on a new meaning. It began to refer to this new medical duty to assist the terminally ill – but not to hasten death.

In the wake of the mid-century revolution in anaesthetics and aided by innovations such as the hypodermic syringe, doctors began to “treat” the dying with painkillers as well as prayers.

In 1870, Samuel Williams, a Birmingham businessman and amateur philosopher, proposed a more definitive form of this new medical treatment for the terminally ill. In an essay called Euthanasia, published by the local Speculative Club, he wrote:

That in all cases of hopeless and painful illness, it should be the recognised duty of the medical attendant, whenever so desired by the patient, to administer chloroform or such other anaesthetic as may by-and-by supersede chloroform – so as to destroy the consciousness at once, and put the sufferer to a quick and painless death.

Williams sparked a debate that has waxed and waned but never gone away. But how had this come to look like a good way to die?

Changing meanings of pain

In 1901 psychologist and philosopher William James wrote of the “strange moral transformation” that had taken place regarding attitudes to pain:

It is not expected of a man that he should either endure it or inflict much of it, and to listen to the recital of cases of it makes our flesh creep morally as well as physically. The way in which our ancestors looked upon pain as an eternal ingredient of the world’s order, and both caused and suffered it as a matter-of-course proportion of their day’s work, fills us with amazement.

Historian Stephanie Snow observes that as anaesthetics and other methods of pain relief became available in the 19th century, people began to see pain – the experience but also the sight of it – as more damaging and demoralising.

A new generation of comfortably off Victorians who considered anaesthesia commonplace could no longer stomach physical suffering. Now pain was something that could not just be eliminated but struck as cruel, unusual and degrading: “an alien force which undermined man’s very humanity”.

Dying and suffering became things from which people, particularly children, should be shielded.

A modern paradox

Medical methods aimed at eliminating the pain of the dying process developed as the fear of death – a fear that for centuries dwelt on the post-mortem horrors of hell – began to centre on the horror that could precede it.

Paradoxically, this fear arose and gained momentum as most people in Western cultures became increasingly insulated from such suffering. As mortality declined, more people died in hospital under the care of specialists, and doctors’ ability to control pain advanced in ways previously unimaginable.

This very modern anxiety can be historically tracked from Williams’s 1870 proposal to the assisted dying bill soon to be debated in the Victorian parliament.

Our ancestors would be amazed.

Complete Article HERE!

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When life is coming to a close: three common myths about dying

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[O]n average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.

Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.

It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.

The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

Complete Article HERE!

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6 Beautiful African Death Rituals

Nuzo Onoh

By Nuzo Onoh

The “Fantasy Coffins” Ritual:

The Ga tribe of Ghana are famous for building “Fantasy Coffins” to bury their dead. These coffins have shapes which symbolise the interests and activities of the departed in their lifetime. So, you get beautiful coffins built with fantastical shapes like shoes, cars, animals, mobile phones, beer bottles, etc. This ensures that the final resting place of the dead is inside something they love. Awesome! I shall ask my kids to order a fantasy bottle of Irish Baileys coffin for my ashes come my time 😊

Fantasy Coffins

The “Turning of the Bones” Ritual:

The people of Madagascar have a beautiful ritual to honour their dead. Once every seven years, in a joyous celebration, the immediate family of the dead will exhume the bodies of their beloved dead to clean and re-clothe them in lovely new garments, talk with them and bring them up to date with all that’s happened in their absence. The main purpose of this ritual is to allow the souls of their ancestors to re-join the living and indulge once again in all the worldly pleasures they once knew. In the words of Brad Bernard who witnessed the death ritual first hand, “One by one, the corpses are delicately pulled from the tomb and wrapped in straw floor mats… They are laid side-by-side on the flat ground to be cleaned and dressed, the names are written in faded black marker to tell them apart. Their dried burial garments are delicately pulled from their corpses…to avoid taking too much flesh. The bodies are dressed in fresh silk garments and individually whisked off by awaiting family members. The same corpse I touched in the crypt is now in her granddaughter’s arms, dancing in circles. She holds her grandmother delicately, crying tears of happiness and talking about her progress in school. In that moment, I heard a voice answer the granddaughter’s call that I still cannot explain. To this day, I dream of that moment.  That voice is hard to forget.

Turning of the Bones

The Grudge-Stopper Ritual:

The Banyankole tribe of Uganda hold a special death ritual for people who die harbouring a grudge against someone before their death. They bury the corpses of the grudge-holders with various objects for the grumpy spirits to keep them so occupied that they’ll have no time or inclination to haunt the unfortunate victims of their grudges. These objects can be crafts, musical equipment, games, farming implements, jewellery, even a bible and books and anything else that’ll ensure the grumpy dead is not left idle to cause mischief. I’m guessing copies of Stephen King’s books will definitely keep my grumpy spirit happy come my time. What will be yours?

Sex and the Dead:

The Buganda tribe has a quaint tradition reserved for deceased spouses. When a spouse dies, the corpse is buried wearing the underwear of the surviving spouse. “If the deceased is a man, his wife dresses him up in her underwear, while saying out loud to him that he has gone to the grave with his wife. Similarly, a man does the same when his wife dies.” This death ritual deceives the ghost of the dead spouse, convincing him/her that they’ve been buried with their living spouse. As a result, they’ll not torment the living spouse for sex at night.

The Black Stool of the Asante:  

To the Asante of Ghana, the stool is the most important object, representing power and unity. The stool also denotes the office of a high chieftain. A new chief/king is enthroned with his own special stool which he must never abandon. So, when a chief dies, the Asantes proclaim, “The stool has fallen”. The stool then becomes the abode of the spirit of the departed King. It is ceremonially blackened, first by smoking it, then smearing it with kitchen soot and egg yolk. From then, the black stool becomes an ancestral seat, a permanent reminder of the beloved ruler. It is guarded in a special room, where it’s placed on animal skins or beds and never directly on the ground. Sacrifices are made to the stool and the dead chief is immortalized and honoured with his Black Stool where his spirit resides. The black stool is offered food and libation and brought out to the public for festivals. A new chief/king must bare his chest and kneel before the black stool of his predecessor in humility and respect. 

The Black Stool

Boozing up The Ancestors:

Finally, in my wonderful Igboland, some clans still practice the culture of burying their chief or family head in an upright position with a long funnel leading from the grave right into his open mouth. The family would then feed the revered departed with palm-wine, schnapps or other spirits to ensure he continues to enjoy the intoxicating pleasures of the earthly world he’s left. This form of reverence helps maintain the bonds between the departed and the living, ensuring the deceased’s name is never forgotten. As a child, I recall enjoying the wonderful libation ceremonies to my late great-grandfather amongst the extended family and clan, an event that reinforced the bonds of love and closeness amongst us. In my latest book, Dead Corpse, I touched on that beautiful burial rite amongst some other less beautiful ones.

So, that’s it guys! Hope you’ve enjoyed discovering some of our quaint and beautiful African Burial Rites. I write on the darker rituals in my African Horror books, since we need horror to create horror. But as you can see, the death ritual is a truly beautiful one in most African cultures, even if not in my books.

Complete Article HERE!

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

by Kay Bransford

Caught off guard

[T]he 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.

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