[G]eraldine was warmly opinionated and, along with her husband, she’d raised her four daughters to be the same.
When work settled and time allowed, she melted into the couch next to any of her children who were home and turned on the Hallmark channel. If a movie showed people who couldn’t care for themselves, she would remark, “I don’t want to live like that,” or “if that’s me, don’t bother doing all that.”
On May 25, a clot blocked a blood vessel in Geraldine’s heart. Her husband performed CPR. She was whisked to the hospital, where her heart survived, but lack of oxygen launched her brain into uncontrollable seizures. At age 56, her melodic Irish accent was silenced.
Her lips sagged around a breathing tube when I met her three weeks later. Her limbs lay wherever we put them. Kinked gray hair stood in all directions from her scalp, pushed aside by electrodes that recorded brain activity.
In the small conference room in our neuro intensive care unit, we discussed Geraldine’s prognosis with her family.
“We can place a long-term breathing tube in her neck and a feeding tube in her stomach,” I said, “but there are no cases in the medical literature of someone like her living independently again. The best we could hope for is a life of near-complete dependence.”
“When we first came to the hospital, doctors told us my mom might be brain-dead,” one of Geraldine’s daughters countered. “Now, she takes breaths on her own sometimes. She’s already improving.”
Just as Geraldine was stubborn and exceptional in life, her family believed she would be exceptional in beating her prognosis.
“It might be different if my mom was 70 or 80,” her daughter went on, “but she’s only 56.”
For Geraldine’s family, the immediate fear of watching her die outweighed the unfamiliar pain of sustaining her on machines and watching her disappear in a long-term care facility.
Our medical team had seen hundreds of people like Geraldine, most of whom returned to the hospital month after month to manage complications of immobility. Sparse cases of recoveries were overwhelmed by painful, expensive, drawn-out deaths, ones we would never wish for ourselves or our own families.
But for Geraldine’s family, every decision was new. For them, nobody was like Geraldine.
In every other part of medicine, doctors make recommendations for medications, lifestyle changes and surgeries. We don’t offer cancer patients six different chemotherapy regimens and ask them to weigh the pros and cons. Yet when it comes to end-of-life decisions, doctors are terrified of violating patient autonomy. We are scared of our own medical opinions.
Instead of saying, “I recommend…,” we often offer a platter of life-prolonging measures, most of which are unlikely to improve a patient’s quality of life, but which offer the possibility of hope. The patient’s heart will still beat. Her personality will be gone, but her chest will still rise and collapse. Families see an opportunity for loss to be delayed, perhaps even dodged. Then we are surprised when they take us up on the offer to prolong dying.
“I think she would want more time to try and recover,” Geraldine’s daughter said.
So we kept Geraldine alive. A plastic breathing tube sprouted from her neck and a feeding tube with peach-colored formula buried itself in her stomach.
In the hospital, Geraldine’s family learned the common complications of immobility: infection, blood clots and bedsores.
When the infection started, a fever sounded the alarm. We counted the possible causes. Geraldine had a breathing tube in her windpipe, a feeding tube in her stomach and an IV line in her neck, each an access road for bacteria. Lying in bed put her at risk for pneumonia and urinary tract infections. Like mosquitoes in standing water, infections proliferate when the body is still.
Geraldine’s blood clots weren’t a surprise. Medical students are inculcated with the famous triad of conditions that predispose patients to clots, and Geraldine had all of them. Her body was inflamed and torn from the heart attack, infections and procedures that caused her blood vessels to release molecules that helped blood to clot. Lying in a hospital bed, not moving anything unless it was moved, her circulation slowed. Pools of static blood dried into a thick paste in her blood vessels.
Thanks to aggressive nursing care, when Geraldine developed a bedsore it was managed at an early stage. But the term “bedsore” is an understated euphemism. It recalls the annoyance of a cold sore or the tenderness of muscles after the gym. The grotesque image of bone pressing through skin is hidden.
In people who are immobilized, bedsores develop under bony prominences like the heels and the skull. At first, the skin becomes red. If the bedsore progresses, the skin’s outer layer, then the inner layer, breaks down. Finally, in the most severe stage, bone, muscles and tendons are exposed. The entire process can happen in just a few days.
Sixty days after her heart attack, Geraldine was stable enough to leave the I.C.U. She was in a persistent vegetative state — unresponsive to external stimuli. She opened her eyes, as if she were about to say something, but nothing ever came out. Her gaze roved around the room. An ambulance took her to a long term care facility, where she was dependent on machines and people.
“When you first hear someone you love is sick, you think it’s a short term thing,” her daughter told me over the phone a month later. “It’s adjusting to the long term aspect that’s hard.” Geraldine’s daughter woke up at 5 a.m. every day to spend time with her mom before work.
“I think it’s more of a disappointment for my dad,” she said. “He told us that if he ever gets sick, he doesn’t want any of this.”
Geraldine’s family lived between hope and guilt, with the weight of each side in flux. “If my mom knew what we were doing right now, she’d probably be mad at us,” her daughter reflected a few weeks ago.
Yet in the same breath, her voice rose and she said: “My mom’s a fighter, so I think she would be happy with us giving her a shot. We’re hoping for this miraculous turnaround.”
It did not come. Geraldine died of sepsis earlier this month, after more than four months of care.
“People don’t know what they’re in for,” Geraldine’s daughter reflected after the funeral. “It hurt all of us to see her like that.”
In the final days of Geraldine’s life, a doctor asked if the family of another patient in the I.C.U. could visit Geraldine to see what prolonged dying looked like. Geraldine’s family was kind enough to agree.
The visiting family chose to transition their loved one to hospice care.
Complete Article ↪HERE↩!
[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!
[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!
[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!
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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Kass Hall is a law student with a background in art and design; she lives with her husband and their pug called Elvis. She describes herself as a sister, a daughter, an aunty and a friend.
She has been living with cancer for 27 years.
“I’m getting good at defying the odds, but I’ll never be in remission,” Kass says. “I’ll always be under my oncologist and surgeon’s eagle eyes, and I know that each hurdle, big or small, is a hurdle closer to the finish line.”
Impending death is not the kind of thing you adjust to. Despite the number of times she’s come close, Kass, now 39, is frank about being scared. She is under no illusions about what dying is like — she has seen “many, many friends, from children to older people, dying slowly and painfully.”
“I’ve been in the room in the final moments of life, and though we do our best to make people ‘comfortable’, it’s a situation I do not want to find myself in — for my own sake and that of those who love me,” she says.
This is how Kass has come to be an advocate for voluntary assisted dying legislation — her experience leaves her pretty uniquely placed to clap back at people opposed to it. With new assisted dying legislation proposed in Victoria at the moment, now is a particularly pressing time to persuade people of the bill’s importance.
“I have always liked the idea that, when I reach ‘my line’, I could choose to end my own pain. Watching someone you love die is one of the worst experiences a human can endure, and I imagine being the person dying is even worse.”
It’s an experience explored in the recently released film, Stop The Horror. A graphic five-minute short directed by Justin Kurzel, the film tells the true story of a man who dies over a period of three weeks, exploring what he and his family are forced to deal with.
Kass’s first diagnosis was in 1990, when she was twelve. The kind of cancer she has is incredibly rare, and was hard to pin down for a long time — as she wryly puts it, “what they thought it was then is not what they think it is now”.
That first diagnosis led to surgery and chemotherapy. On five separate occasions, her parents were called to the hospital to say goodbye. And yet, against all odds, Kass survived, though not without complications. “At that time I lost part of my stomach and duodenum [the first section of the small intestine],” she says. “The chemo left me infertile and with a heart condition, though thankfully my heart has remained strong.”
These complications have been multiplying steadily ever since. In 2000, Kass lost a kidney. In 2008, her thyroid. In 2011, the cancer returned to her stomach and liver. It was only in 2012 that her doctors discovered she had a genetic defect that was causing the tumours to return.
Here’s the cruel thing about this genetic defect: in addition to all but guaranteeing the cancer’s return, it makes Kass ineligible for an organ transplant. And while so far it’s been possible to combat the resurgence of tumours with surgery, she’s keenly aware that things can’t continue this way forever.
“There’s going to come a time where surgery is no longer an option, and that’s when I start the slow process of dying.”
“The idea of dying anytime soon is not one I am comfortable with,” she says, “but who is, though?” She’s coming up on her 40th birthday in January, a milestone her oncologist has been telling her for years would be a “great outcome”.
Why Voluntary Assisted Dying Legislation Matters
Assisted dying has always been controversial, often for reasons Kass is keen to see us move past. Concerns about younger people — not children, but adults in their late teens and early twenties — having access to the option of assisted dying are, to Kass’s mind, utterly dismissive of terminally ill young people’s experience.
“There is no difference in older people and younger people making this decision,” she says. “If anything, for younger people the decision is harder because we think about what we may miss out on — weddings, children, travel.”
Kass says arguments that say young people with terminal illness don’t have the necessary perspective or clarity to decide to end their lives “seek to debase a person’s autonomy and thought process.”
“It’s designed to second guess a person. No one has the right to do that. Anyone who said that to me would probably not like the response they get from me.”
As for those who argue that choosing to die is a selfish act, Kass says her response “probably isn’t fit to print”.
“What I can say is that what other people think is not my problem. They are not living my life, they’re not walking in my shoes. Everyone has an opinion, but my life deals in facts. What others think about my choices, especially if they’ve never experienced my situation, is of zero consequence to me”.
Some of the most legitimate and important critiques of voluntary assisted dying legislation, though, come from people who have experienced Kass’s situation, or situations like it. These campaigns are run by people with terminal illness or life-threatening disabilities who are concerned that assisted dying legislation will needlessly kill many people through a subtle combination of pressures. Things like, for example, the feeling of being a burden on close family or medical services.
These are arguments Kass is willing to engage on — she says she’s aware of and understands the campaign in question, but thinks the legislation proposed by the Victorian Government includes adequate safeguards, including a multi-step process she hopes will catch any instance of family or external pressure.
“To my mind,” she says, “that is why patient autonomy is the key. At the end of the day, what family members think and what their needs are is not what this is about — it is and should always be about the primary patient. If the primary patient has not requested and been through the voluntary assisted dying process, then it shouldn’t be available.”
“And any family member that puts any pressure on a person who is dealing with illness or disability should find the map to hell and go there. There are so many people in the disability community and those with long term illness who have so much to contribute and who are outstanding members of society. Having an illness or disability doesn’t diminish us as people.”
Reaching The Finish Line
In Kass’s case, she knows her husband will support her decision if she reaches her line. She hopes that won’t be soon — she wants to grow old with her husband, see her nieces and nephews grow up, have a full legal career. For the time being, she’s optimistic.
“I have no interest in suffering unnecessarily,” she says. “It will be my decision.”
“I respect that this won’t be for everyone. I just feel that a choice for those of us who do seek to end our own suffering should be given to us. We all have our own paths in life, and should have as much choice made available to us as possible.”
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