I Didn’t Know My Mom Was Dying. Then She Was Gone.

Would things have been better if I had known the truth?

The author as a child with her mother, circa 1994

By Lenika Cruz

The pink notebook my mother kept when she was sick contains 18 entries, most of them shorter than a haiku. The pages list medications and surgeries, the names of family members who sent money, and which body parts hurt and how badly. One entry, from October 1995, reads: “Neck (severe pain) Coming out of the mall to cold air.” I was 5 that day; my sister was 3. We were leaving the mall after taking a family portrait when my parents started panicking—about exactly what, I didn’t know. I just remember my dad rushing my mom home because of what I later learned was an excruciating neck spasm. Hours later, an ambulance took her to the hospital for the last time. Four months later, she was gone.

One strange thing about losing a parent so young is that you might forget which details you learned about their death and when; you might also question whether what you remember is the truth or a distortion. At some point during the first decade of my life—I’m not sure when or how—I became aware that my mom had died of breast cancer. Last month, I asked my father how much my sister and I knew about our mother’s illness at the time, if we understood that we might soon lose her. “I don’t know if we ever told you,” he admitted. “Your mom wanted to shield you both from that stuff. She always wanted to protect you.” I figured, then, that we had learned the truth from overhearing conversations between the grown-ups around us—and I wondered whether it would have been better if we had known before she passed.

What should you say to a child when a parent is dying? The answers to this impossible question generally fall into two buckets: Tell them the truth or protect them from the truth. The most persuasive arguments in either direction prioritize what would be best for the child. My colleague Caitlin Flanagan wroteabout why she and her husband told their then-5-year-old sons that she had breast cancer: “I thought I had the power to protect them from hardship. No one has that … But endurance is built into the human condition, and it’s as powerful in children as it is in adults.” In a 2019Atlantic essay, Jon Mehlman explained why he and his wife chose not to tell their three young daughters about her cancer for seven years—until a month before her death: “Our kids would not be robbed of stability; protecting their sense of the ordinary was everything.” Later, his daughters told him they were grateful not to have known for so long.

The author's mother, Tomo, when she was younger and healthy
The author’s mother on her honeymoon in Japan

Reading these accounts, I felt conflicted about my own experience. I hadn’t known my mom’s diagnosis, and no one explained to me what a mastectomy or chemotherapy was, but I witnessed plenty of signs that she was declining. I saw her without her wig after all her hair fell out. I knew that she sometimes didn’t feel well, and I would visit her in the hospital, where I’d push her wheelchair and play with the automatic-recline button on her bed. I understood during those dark months that things weren’t normal, but I still remember myself as a happy child. I know now that memories can be faulty, and I wonder if it’s truly possible for a child surrounded by so much evidence of suffering—and denied the full truth about that suffering—to emerge from that experience unscathed.

Was I simply too young to understand mortality? Linda Goldman, a grief counselor and the author of several books on children and loss, told me that, contrary to what many adults believe, small children are not too young to feel sad about death. “Kids can love when they’re toddlers, and they can grieve. They’ll cry when a goldfish dies!” she said. And when it comes to a parent’s illness, Goldman explained, children are more perceptive than many adults give them credit for: “Kids are pretty savvy, and they take in what’s going on in their environment even if they’re not told the truth.”

While she acknowledged that the question of preparing children for loss has “no black-and-white answer,” she does recommend being honest about a loved one’s illness or death in an age-appropriate way. That’s because when children sense that they’re being lied to, Goldman said, they can start to fear for their safety and become distrustful. I told her that I had been wondering whether my parents were wrong not to have prepared me and my sister for my mom’s death, and whether I wasn’t really as happy as I remembered.

But the more we talked, the more I realized that fixating on a binary question—to tell children or not tell them?—obscures the many other factors that shape how a child will process loss. For instance, Goldman explained how having a memory of helping a dying family member—giving them flowers, bringing them medicine, making them laugh—can make children feel useful, and be an enormous psychological comfort. I thought of how one of my strongest memories of my mom’s illness is helping her reverse the car when she was driving. By that point, the cancer had spread to her lymph nodes and turning her neck hurt, so I would look back for her and let her know whether the coast was clear.

So much, too, depends on the ability of adults to cope with the situation. “I’ve found that kids can handle what adults can handle,” Goldman said, noting that children look to grown-ups for emotional cues. When we spoke recently, my dad told me something I had never known before: that back then, even hehadn’t truly believed that his wife might die. He had always thought that she would pull through somehow. Perhaps that naïveté or stubborn faith—whatever you want to call it—had the unintended consequence of shielding me and my sister. Goldman also said that when parents are struggling, children need to have adults around them whom they know they can depend on. While my dad was balancing a full-time job with helping to care for my mother, my mom’s parents came to stay with us and looked after me and my sister. At no point did we have to feel abandoned or alone.

Being able to say goodbye—whether before or after a parent dies—is crucial as well, Goldman said. Even though I didn’t know that my mom was nearing the end, I was at the hospital all the time during her final weeks. And hours after she passed, according to my father, I took him by the hand and led him toward her hospital room. Then I crawled into the bed next to her and started touching her face and talking to her, even though she could no longer respond. A week later, at her funeral, my sister and I stood next to her coffin the entire time. Sometimes, Goldman said, adults want to keep children away from funerals and other rituals of loss: “We’re so death-phobic that it’s hard to admit that death is a part of life.” But these moments can offer valuable opportunities for closure, even if the search for answers and feelings of loss never quite go away.

When I called Goldman, I was half-expecting her to tell me all the ways I must have remembered something incorrectly, to point out the holes in my story. Instead, she gave me a deeper appreciation not only for what my parents had to go through, but also for the ways in which my 5-year-old brain had allowed me to come away from that painful time carrying warmly lit scenes of my mother: Even with IVs coming out of her, with a terry-cloth cap keeping her bare head warm, she looked so pretty laughing.

Somehow, when my parents made what some therapists might call mistakes, the results still had a certain beauty to them. Goldman said adults should be careful with clichés about death, such as telling young children that someone who is dying is simply “going to sleep” or that they will be “watching over you all the time.” Kids might take these words literally and become afraid of sleeping or worry about being surveilled. Like many other children, I was told that my mother would be “watching me from up in heaven,” a place I understood only as being somewhere in the sky. Two weeks after she died, we flew back to Guam, the island where my parents first met, where we would bury her. I had the window seat. Staring out over the left wing of the plane, I searched for her among the clouds

Complete Article HERE!

A Neuroscientist Prepares for Death

Lessons my terminal cancer has taught me about the mind

By David J. Linden

When a routine echocardiogram revealed a large mass next to my heart, the radiologist thought it might be a hiatal hernia—a portion of my stomach poking up through my diaphragm to press against the sac containing my heart.

“Chug this can of Diet Dr. Pepper and then hop up on the table for another echocardiogram before the soda bubbles in your stomach all pop.”

So I did. However, the resulting images showed that the mass did not contain the telltale signature of bursting bubbles in my stomach that would support a hernia diagnosis. A few weeks later, an MRI scan, which has much better resolution, revealed that the mass was actually contained within the pericardial sac and was quite large—about the volume of that soda can. Even with this large invader pressing on my heart, I had no symptoms and could exercise at full capacity. I felt great.

The doctors told me that the mass was most likely to be a teratoma, a clump of cells that is not typically malignant. Their outlook was sunny. Riffing on the musical South Pacific, my cardiologist said, “We’re gonna pop that orange right out of your chest and send you on your way.”

While I was recovering from surgery, the pathology report came back and the news was bad—it wasn’t a benign teratoma after all, but rather a malignant cancer called synovial sarcoma. Because of its location, embedded in my heart wall, the surgeon could not remove all of the cancer cells. Doing so would have rendered my heart unable to pump blood. The oncologist told me to expect to live an additional six to 18 months.

I was absolutely white-hot angry at the universe. Heart cancer? Who the hell gets heart cancer?! Is this some kind of horrible metaphor? This is what’s going to take me away from my beloved family, my cherished friends and colleagues? I simply couldn’t accept it. I was so mad, I could barely see.

[And now comes the part where I’m weeping while I type.]

Five years ago, I met Dena and we fell for each other hard. This wasn’t mere “chemistry”; it was more akin to particle physics—a revelation of the subatomic properties of love. Dena has uplifted me with her pure and unconditional affection, her kindness, beauty, optimism, and keen intelligence. She is the best wife anyone could want, and she is way better than I deserve. Leaving her behind will be the very hardest part of this whole awful situation.

Until the moment of that diagnosis six months ago, I had been the luckiest man in town. My twins, Jacob and Natalie, have been nothing but a delight for 25 years. I’ve been fortunate to have a long career in academic science with the freedom to pursue my own ideas, which is a gift like no other. My good friends are a constant source of joy and amusement. By any reasonable measure, I’ve had a great life, full of love, creativity, and adventure.

I may be dying, but I’m still a science nerd, and so I think about what preparing for death has taught me about the human mind. The first thing, which is obvious to most people but had to be brought home forcefully for me, is that it is possible, even easy, to occupy two seemingly contradictory mental states at the same time. I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me. This runs counter to an old idea in neuroscience that we occupy one mental state at a time: We are either curious or fearful—we either “fight or flee” or “rest and digest” based on some overall modulation of the nervous system. But our human brains are more nuanced than that, and so we can easily inhabit multiple complex, even contradictory, cognitive and emotional states.

This leads me to a second insight: The deep truth of being human is that there is no objective experience. Our brains are not built to measure the absolute value of anything. All that we perceive and feel is colored by expectation, comparison, and circumstance. There is no pure sensation, only inference based on sensation. Thirty minutes fly by in a conversation with a good friend, but seem interminable when waiting in line at the DMV. That fat raise you got at work seems nice until you learn that your co-worker got one twice as large as yours. A caress from your sweetheart during a loving, connected time feels warm and delightful, but the very same touch delivered during the middle of a heated argument feels annoying and presumptuous, bordering on violation.

If someone had told me one year ago, when I was 59, that I had five years left to live, I would have been devastated and felt cheated by fate. Now the prospect of five more years strikes me as an impossible gift. With five more years, I could spend good times with all of my people, get some important work done, and still be able to travel and savor life’s sweetness. The point is that, in our minds, there is no such thing as objective value, even for something as fundamental as five years of life.

The final insight of my situation is more subtle, but it’s also the most important. Although I can prepare for death in all sorts of practical ways—getting my financial affairs in order, updating my will, writing reference letters to support the trainees in my lab after I’m gone—I cannot imagine the totality of my death, or the world without me in it, in any deep or meaningful way. My mind skitters across the surface of my impending death without truly engaging. I don’t think this is a personal failing. Rather, it’s a simple result of having a human brain.

The field of neuroscience has changed significantly in the 43 years since I joined it. I was taught that the brain is essentially reactive: Stimuli impinge on the sense organs (eyes, ears, skin, etc.), these signals are conveyed to the brain, a bit of computation happens, some neural decisions are made, and then impulses are sent along nerves to muscles, which contract or relax to produce behavior in the form of movement or speech. Now we know that rather than merely reacting to the external world, the brain spends much of its time and energy actively making predictions about the future—mostly the next few moments. Will that baseball flying through the air hit my head? Am I likely to become hungry soon? Is that approaching stranger a friend or a foe? These predictions are deeply rooted, automatic, and subconscious. They can’t be turned off through mere force of will.

And because our brains are organized to predict the near future, it presupposes that there will, in fact, be a near future. In this way, our brains are hardwired to prevent us from imagining the totality of death.

If I am allowed to speculate—and I hold that a dying person should be given such dispensation—I would contend that this basic cognitive limitation is not reserved for those of us who are preparing for imminent death, but rather is a widespread glitch that has profound implications for the cross-cultural practice of religious thought. Nearly every religion has the concept of an afterlife (or its cognitive cousin, reincarnation). Why are afterlife/reincarnation stories found all over the world? For the same reason we can’t truly imagine our own deaths: because our brains are built on the faulty premise that there will always be that next moment to predict. We cannot help but imagine that our own consciousness endures.

While not every faith has explicit afterlife/reincarnation stories (Judaism is a notable exception), most of the world’s major religions do, including Islam, Sikhism, Christianity, Daoism, Hinduism, and arguably, even Buddhism. Indeed, much religious thought takes the form of a bargain: Follow these rules in life, and you will be rewarded in the afterlife or with a favorable form of reincarnation or by melding with the divine. What would the world’s religions be like if our brains were not organized to imagine that consciousness endures? And how would this have changed our human cultures, which have been so strongly molded by religions and the conflicts between them?

While I ponder these questions, I am also mulling my own situation. I am not a person of faith, but as I prepare for death, I have a renewed respect for the persistent and broad appeal of afterlife/reincarnation stories and their ultimately neurobiological roots. I’m not sure whether, in the end, faith in afterlife/reincarnation stories is a feature or a bug of human cognition, but if it’s a bug, it’s one for which I have sympathy. After all, how wonderfully strange would it be to return as a manatee or a tapeworm? And what a special delight it would be to see Dena and my children again after I’m gone.

Complete Article HERE!

Black-owned hospice seeks to bring greater ease in dying to Black families

André Lee, administrator and co-founder of Heart and Soul Hospice, stands with Keisha Mason, director of nursing, in front of their office building last week in Nashville, Tenn.

By Blake Farmer

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. And so when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.

“He’s good to me — buys me anything I want,” she says, as she pulls a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off all the trinkets she picks up at estate sales.

Down the hall, Willie lies in their bed, now unable to speak. His heart is giving out.

“You gonna wake up for a minute?” she asks as she cradles his head. She pats his back while he clears his throat. “Cough it out.”

Mary has been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville that is focused on increasing the use of comfort care at the end of life by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they’re trying to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear that they are Black and that they intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data show that in Nashville, just 19% of the hospice patients are Black though they make up 27% of the population.

Though the area already had numerous hospice agencies, regulators granted the permission, based primarily on the value of educating an underserved group.

Hospice care helped Mary and Willie Murphy with a few baths a week, medication in the mail, and any medical equipment they needed. And there was the emotional support from a caring nurse.

In Mary Murphy’s first experience with hospice, her mother had suffered from dementia for decades, yet still when transitioning to hospice came up with her mother, Murphy had many concerns. She felt like she was giving up on her mom.

“My first thought was death,” she says.

National data shows Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with white patients for whom the figure is 54%, according to data compiled annually by the National Hospice and Palliative Care Organization.

Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the last six months of life, but predicting when the end will come is difficult, especially with dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she says about the day her mother died.

This year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” says Keisha Mason, who is Heart and Soul’s director of nursing.

Mason, like Murphy, is Black and says that in her view, there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’ ” she says.

As Mason has helped launch this new hospice agency, she’s begun using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she says.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit, Nashville pastor the Rev. Sandy McClain, and André Lee, who is a former hospital administrator on the campus of Nashville’s Meharry Medical College, a historically Black institution.

Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

Lee says more families need to consider home hospice as an alternative for end-of-life care. Nursing homes are pricey. And even with Medicare, a hospital bill could be hefty.

“You’ll go in there and they’ll eat you alive,” he says. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons why there’s a gap between white and Black families’ use of the benefit. Some speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.

The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide for how to reach more Black patients this year. It recommends connecting with influential DJs and partnering with Black pastors. But also just hiring more Black nurses.

Lee says it’s not overly complicated.

“A lot of hospices don’t employ enough Black people,” he says. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have been attempting to minimize any barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York says her large agency has been meeting with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she says. “They had many of the same sort of misperceptions.”

Whether it’s an upstart hospice company or one of the oldest in the country, everyone still has a lot of end-of-life educating to do to bridge the racial gap, Drayton says. “We’re not just handing out a brochure,” she adds.

Complete Article HERE!

Congressman Asks Colleagues To Demand DEA Allow Psilocybin Treatment For Terminal Patients


A congressman is asking his fellow lawmakers to join him in requesting that the Drug Enforcement Administration (DEA) allow terminally ill patients to use psilocybin as an investigational treatment without the fear of federal prosecution.

A new Dear Colleague letter that’s being circulated by Rep. Earl Blumenauer (D-OR) notes that there are state and federal right-to-try (RTT) laws that should make it so certain patients can obtain the psychedelic given that it’s shown early potential in ongoing clinical trials.

Yet DEA has denied access, resulting in a lawsuit that was filed in March by a Washington State doctor who sought federal guidance to treat terminal patients with psilocybin mushrooms and was told there wasn’t a legal avenue for him to do so.

“There has been a growing body of evidence in recent years pointing to the safety and effectiveness of psilocybin assisted therapy as a potential method to provide care to individuals with treatment-resistant depression and/or anxiety,” Blumenauer wrote to fellow lawmakers.

“However, even with these promising advancements, the pace of regulatory approval has been far too slow for a naturally occurring substance that has evidence of having been safely used by humans for therapeutic uses for thousands of years,” the congressman said. “This is even more true when the quality of care and treatment for terminally ill individuals is resultingly limited and impacted.”

Congress and 41 states have adopted right-to-try laws, which allow patients with terminal conditions to try investigational medications that have not been approved for general use. The letter says DEA has “has failed to abide” by the law.

“I hope you will join me in urging that the DEA takes quick action to remediate these concerns and end their obstruction of access to end-of-life care,” Blumenauer said.

The lawsuit against DEA is currently before the U.S. Court of Appeals for the Ninth Circuit, which heard oral arguments in the case in September. Washington State’s attorney general’s office joined the plaintiffs in support of psilocybin access. DEA argued that the court should dismiss the suit because it lacked jurisdiction.

Blumenauer is asking his colleagues to sign onto a letter addressed to DEA Administrator Anne Milgram, who was appointed by President Joe Biden and confirmed by the Senate over the summer.

“We strongly believe that our constituents suffering such illnesses should have access to this investigational drug should they decide to pursue such a course of treatment and we urge you to take quick action to ensure that the DEA accommodates federal and state RTT laws and allows terminally ill patients to receive psilocybin for therapeutic use,” it says.

The lawsuit—which was brought by an oncology clinic, the Advanced Integrative Medical Science (AIMS) Institute—”can, and ought to be, quickly settled in a manner which addresses DEA’s legitimate concerns about ensuring adequate security to prevent diversion, while enabling dying cancer patients such as those in the AIMS case access to psilocybin,” the letter says.

“Urgent action is needed to ensure that patients currently suffering terminal illness can elect treatment involving psilocybin,” it concludes. “We urge you to take quick action to ensure that the DEA accommodates enacted RTT law and allows terminally ill patients to receive psilocybin for therapeutic use. We appreciate your attention to this urgent matter.”

Sunil Aggarwal, the AIMS doctor behind the lawsuit, told Marijuana Moment that he is “so heartened and grateful for Representative Blumenauer’s leadership here to help my patients who have advancing serious and life-threatening cancer to try psilocybin-assisted therapy, as is their right, to palliate and relieve suffering.”

“High quality clinical evidence has shown that psilocybin-assisted therapy can help generate awe, connection, and joy, and these can impact immune function, mood, demoralization, and potentially prognosis,” he said. “The time is now for all members of Congress in Washington State and beyond to sign onto this letter that implores the US DEA to respect and protect the right to try law’s promises for my patients and others like them. It is the right thing to do, and this is an urgent and time-sensitive matter.”

The Blumenauer-led letter to DEA closes for signatures on Friday. It’s not clear when it will be sent to the agency, but it’s currently dated for some time in December.

Blumenauer separately told Marijuana Moment on Thursday that he’s “excited” about advancements in psychedelics research, as well as the implementation of a psilocybin therapy program that’s being set up in his home state of Oregon, where voters approved the historic reform during last year’s election.

Oregon’s initiative is “a model about how to take advantage of the this therapy for people who desperately need it,” he said. “There are a number of opportunities to demonstrate the power of this therapy. And we are, in a very thoughtful and systematic way, implementing that in Oregon to show how it can result.”

“I think this discussion needs to take place on Capitol Hill—and it’s something that I would like to occur early in the new the new year,” Blumenauer said. “Let people understand the potential, using opportunities now for people in the late stages of life to be able to try this using federal legislation.”

Complete Article HERE!

9 Items That Make Home Caregiving Easier

These resources can reduce challenges in caring for loved ones

By Robin L. Flanigan

Caregiving is hard, but don’t let your home make it harder.

Bathrooms, dim lighting and even furniture pose risks when taking care of a loved one. But new tools and techniques can improve the safety of a home, making caregiving a bit easier. And it doesn’t need to be complicated in order to be helpful.

“Household items and a home environment, once innocuous, need to be reconsidered through a new lens,” says Monica Moreno, senior director of care and support at the Chicago-based Alzheimer’s Association, which offers a home safety checklist to help caregivers keep those living with dementia safe and independent as long as possible. AARP’s free Homefit Guide features smart ways to make a home comfortable and a great fit for people of all ages.

Here are nine tools designed to help caregivers ease the burden of daily challenges. 

1. Sit-to-stand toilet

Research shows that a quarter of falls take place in the bathroom, so assistive toilet seats with adjustable handlebars and seat heights — for safe and stable toilet transfers — are helpful when dealing with weakness and instability issues.

“It’s common for individuals to easily sit down to go to the bathroom, but then they can’t get off the toilet,” says registered nurse Eboni I. Green, cofounder and CEO of Caregiver Support Services, based in Omaha, Nebraska. “Or if they have the ability to get off, they might grab on to an unsecure towel rack and can easily fall.”

2. Adjustable beds

“These may be costly, but they’re a real investment in helping to adjust comfort levels with the push of a button,” says Green. These beds can help create an upright position for eating and are a good tool for preventing bedsores. They also allow for quicker repositioning, and safer and faster transfers in and out of bed. “These beds are revolutionary,” Green says.

3. Walk-in shower with handrails

Making it easy to shower will make it easier for caregivers to get someone with dementia or other challenges to bathe.

Walk-in showers don’t require high, risky steps and offer more room for a seat or bench and grab bars. Be sure to add anti-slip flooring, and faucets that regulate water flow and temperature to prevent scalding.

Costs vary dramatically depending on size and materials. Those being cared for can contribute to the modification process by choosing the tiling, door style and other features.

4. Motion-sensor lights

As aging adults cope with reduced eyesight and slower reactions, caregivers can help their loved ones find their way around — and reduce tripping hazards — by installing wireless motion-sensor lights that illuminate dim areas such as stairs and long hallways.

These lights come battery-operated, have built-in magnets and double-sided adhesives, and shut off after a short amount of inactive time, usually from 15 to 30 seconds.

5. In-home cameras

From fixed models to those that can swivel, tilt and zoom, indoor surveillance cameras help monitor areas that pose greater hazards for accidents, slips and falls. Cameras can also prevent a loved one from leaving a home or wandering off without a caregiver’s knowledge. Keep in mind that consent before installation may be required for this type of surveillance.

“A lot of us caregivers hear the mantra ‘take care of yourself’ but we may not know where to start,” says Eboni I. Green, cofounder and CEO of Caregiver Support Services, which offers an “Ask Emma” caregiver wellness tool.

Named after Green’s mother-in-law and created in part from Green’s dissertation on caregiver wellness, Ask Emma guides caregivers through statements designed to offer a status of sorts for psychological wellness, financial wellness, social well-being and spiritual well-being, among other categories.

The “strength-based” tool then points out where the caregiver is doing well before linking to resources to help with an area that could use improvement.

6. GPS trackers

No matter the distance, GPS trackers encourage loved ones to live an independent life while letting caregivers know exactly where they are. This technology allows for real-time tracking, the setup of safe zones and custom alerts to let caregivers know someone has wandered off. Other features often included are two-way communication and the ability to give others, like additional family members, access to the same information.

GPS devices can be worn as a necklace, watch or bracelet — there are even trackers that come in the form of a shoe insert. Keep in mind that GPS devices may have monthly fees associated with them.

7. Monitoring apps

There are a whole host of digital apps that can be used as monitors, reminders and providers of useful information. The Hero app, when used with a medication dispensing system, tracks refills, adherence and up-to-date information about each prescription. PainScale tracks pain, treatments, medication, activity, mood and sleep. Caring Village stores important documents, personalized to-do lists, daily or weekly schedules of care, and a wellness journal to keep others updated, among other features.

8. Customizable digital clocks

Look for clocks with big, easy-to-read displays or voice capabilities. Some clocks display the time, date and day of the week and allow caregivers to set reminders such as “It is now Saturday afternoon.” Caregivers can program alarms, events, birthdays and holidays. These clocks can mount to the wall or sit on a tabletop.

Models with personalized voice reminders — for medication, appointments and tasks — let the person being cared for hear the comforting voice of the caregiver.

9. Erasable whiteboards and calendars

Place these in commonly frequented areas of the house such as the kitchen and family room, suggests Moreno.

“Larger whiteboards and calendars tend to be easier to use and more legible for people with dementia,” she says.

Complete Article HERE!

‘I have prepared for my death’: Tutu on assisted dying

Towards the end of his life, he began a new campaign in support of the assisted dying movement — a hugely sensitive subject in his Anglican Church

South African anti-apartheid icon Desmond Tutu, described as the country’s moral compass, died on December 26, 2021, aged 90, President Cyril Ramaphosa said.

By AFP, Johannesburg

South African Archbishop Desmond Tutu, who died Sunday at the age of 90, was the moral compass of his beloved “Rainbow Nation”, never afraid to speak truth to power, whatever its creed or colour.

A tireless activist, he won the Nobel Peace Prize in 1984 for combatting white minority rule in his country.

“The passing of Archbishop Emeritus Desmond Tutu is another chapter of bereavement in our nation’s farewell to a generation of outstanding South Africans who have bequeathed us a liberated South Africa,” President Cyril Ramaphosa said in a statement.

Famously outspoken, even after the fall of the racist apartheid regime, Tutu never shied away from confronting South Africa’s shortcomings or injustices.

“It’s a great privilege, it’s a great honour that people think that maybe your name can make a small difference,” he told AFP shortly before his 80th birthday in 2011.

Whether taking on his church over gay rights, lobbying for Palestinian statehood or calling out South Africa’s ruling African National Congress on corruption, his high-profile campaigns were thorny and often unwelcome.

None at the top were spared — not even his close friend, late president Nelson Mandela, with whom Tutu sparred in 1994 over what he called the ANC’s “gravy train mentality”.

Yet “the Arch” brought an exuberant playfulness to all his endeavours.

Quick to crack jokes — often at his own expense — he was always ready to dance and laugh uproariously with an infectious cackle that became his trademark.

It was Tutu who coined and popularised the term “Rainbow Nation” to describe South Africa when Mandela became president.

At the time, Tutu was serving as the first black Anglican archbishop of Cape Town.

Ordained at the age of 30 and appointed archbishop in 1986, he used his position to advocate for international sanctions against apartheid, and later to lobby for rights globally.

Along the way, he won a host of admirers.

“I believe that God is waiting for the archbishop. He is waiting to welcome Desmond Tutu with open arms,” said Mandela, who stayed at Tutu’s home on his first night of freedom in 1990, after 27 years in apartheid jails.

“If Desmond gets to heaven and is denied entry, then none of the rest of us will get in!”

The Dalai Lama called Tutu his “spiritual older brother”.

Irish activist and pop star Bob Geldof praised him as “a complete pain in the arse” for those in power, and US President Barack Obama hailed him as “a moral titan”.

Among Tutu’s critics were Zimbabwe’s veteran former president Robert Mugabe, who described him as an “evil and embittered little bishop”.

Even with his global celebrity, his faith remained an integral part of his life.

His family’s road trips included quiet time for prayers, and his missives blasting the evils of apartheid were signed off with “God bless you”.

“I developed tremendous respect for his fearlessness. It wasn’t fearlessness of a wild kind. It was fearlessness anchored in his deep faith in God,” said apartheid’s last leader, F.W. de Klerk.

Tutu was diagnosed with prostate cancer in 1997 and underwent repeated treatment.

He had retired a year earlier to lead a harrowing journey into South Africa’s brutal past, as head of the Truth and Reconciliation Commission.

For 30 months, the commission lifted the lid on the horrors of apartheid.

Tutu, with his instinctive humanity, broke down and sobbed at one of its first hearings.

A recipient of numerous awards, his causes ranged from child marriage to Tibet to calls for Western leaders to be tried over the Iraq war, and in later year for the right-to-die.

He also swore he would never worship a homophobic God.

“I would refuse to go to a homophobic heaven. No, I would say sorry, I mean I would much rather go to the other place,” he said.

Born in the small town of Klerksdorp, west of Johannesburg, on October 7, 1931, Tutu was the son of a domestic worker and a school teacher.

Following in his father’s footsteps, he trained as a teacher before anger at the inferior education system set up for black children prompted him to become a priest.

He lived for a while in Britain, where, he recalled, he would needlessly ask for directions just to be called “Sir” by a white policeman.

Tutu believed firmly in the reconciliation of black and white South Africans.

“I am walking on clouds. It is an incredible feeling, like falling in love. We South Africans are going to be the Rainbow People of the world,” he said in 1994.

But post-apartheid South Africa increasingly became a source of his despair, as the high hopes of the early days of democracy gave way to disillusionment over violence, inequality and graft.

Never a member of the ANC, Tutu said in 2013 that he would no longer vote for the party, though President Cyril Ramaphosa — an old friend — re-built bridges after coming to power in 2018.

Tutu made a rare public appearance in May 2021 to receive his vaccine for Covid-19. He appeared outside of hospital in a wheelchair, and waved but did not speak.

He married his wife Leah in 1955. They had four children.

Joan Didion Wrote About Grief Like No One Else Could

On a patio deck overlooking the ocean, Quintana Roo Dunne leans on a railing with her parents, writers John Gregory Dunne and Joan Didion, in Malibu, Calif., 1976.

By Annabel Gutterman

Joan Didion made sense of the world through words. She was known for them: her cool, exacting prose; her sentences, smooth and spare. But in the aftermath of her husband’s fatal heart attack in 2003, her relationship with words changed. “This is a case in which I need more than words to find the meaning,” she wrote in her 2005 memoir, The Year of Magical Thinking. “This is a case in which I need whatever it is I think or believe to be penetrable, if only for myself.”

Didion, who died on Dec. 23 at 87, was the author of five novels, several works of nonfiction including Slouching Towards Bethlehem and The White Album, screenplays and more. She was a prolific storyteller who ushered in a new style of journalism, combining research and lyrical imagery with cutting moments of humor. In the foreword of the last book she published before her death, Let Me Tell You What I Mean, writer Hilton Als described Didion as “a carver of words in the granite of the specific.” She both dissected the ordinariness of the everyday for its complexities, and broke down the most foreign of situations into familiar, accessible parts. Crucially, Didion also explored the language we use to process loss, and the limitations of that language. Now, as the world mourns her death, we look to her own words for both guidance and solace.

“Grief has no distance. Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life,” Didion wrote in The Year of Magical Thinking. The book, a finalist for the Pulitzer Prize, chronicled the process of grieving the death of her husband and most trusted collaborator, the writer John Gregory Dunne, a little over a month before their 40th wedding anniversary. (Dunne was writing for TIME when they first met.) When Dunne died, the couple’s adopted daughter, Quintana, was unconscious in the ICU, suffering from pneumonia and septic shock. Didion’s experience with loss continued: A little over a year and a half after Dunne’s death, Quintana died at age 39. The writer examined that second excruciating loss in her 2011 memoir, Blue Nights, detailing a new kind of grief while crafting an aching examination of mortality and aging.

“This book is called ‘Blue Nights’ because at the time I began it I found my mind turning increasingly to illness, to the end of promise, the dwindling of the days, the inevitability of the fading, the dying of the brightness,” she wrote. “Blue nights are the opposite of the dying of the brightness, but they are also its warning.”

Joan Didion, circa 1977

Though both books were rooted in Didion’s agonizing personal tragedies, they were not ones of self-pity or despair. Instead, they sought to understand how memory informs grief and how death shapes life. The title of The Year of Magical Thinking comes from Didion’s experiences reckoning with the finality of death, and the disillusion that exists in its aftermath. In one poignant scene, Didion becomes fixated on her husband’s shoes while going through his clothes.

“I could not give away the rest of his shoes. I stood there for a moment, then realized why: he would need shoes if he was to return. The recognition of this thought by no means eradicated the thought. I have still not tried to determine (say, by giving away the shoes) if the thought has lost its power.”

Didion detailed how she would convince herself that she could bring her husband back, even though she was well aware he was gone. “Magical Thinking is an act of consummate literary bravery, a writer known for her clarity narrating the loss of that clarity, allowing us to watch her mind as it becomes clouded with grief,” the author Lev Grossman wrote in a review for TIME in 2005. “But the book also reproduces, in its formal progression from those first raw, frenzied impressions to a more composed account of mourning, Didion’s recovery. She literally wrote herself back to sanity.”

The Year of Magical Thinking was Didion’s 13th book. She finished it in 88 days during the year after Dunne’s death. It was the first time in 40 years that Didion did not receive feedback from Dunne on a writing project. Although she wrote the book quickly, she said it was difficult for her to finish because the book “maintained a connection with him.

Often described as a companion piece to that book, Blue Nights is another gutting look at a writer grasping for words to describe a loss—this time, of a beloved child. While just as candid as its predecessor, Blue Nights is a more raw exploration of grief, less polished in its structure, with Didion moving between fragmented memories. These range from the scenes of Quintana’s adoption and her reunion with her birth family to Quintana losing a tooth as a child. In Blue Nights, the magical thinking that once consumed Didion is gone, instead replaced with her reflections on memory and rumination on growing older and the ways her daughter’s death made her face her own mortality. “When I started writing, I thought it was going to be about attitudes to raising children,” Didion told The Guardian. “Then it became clear to me that, willy-nilly, it was going to be personal. I can’t imagine what I thought it was going to be, if it wasn’t personal.”

The raw emotional weight of both The Year of Magical Thinking and Blue Nights provided an unflinching look inside Didion’s otherwise steely, sophisticated exterior. In letting her guard down, she allowed readers into her grieving process—and provided a roadmap for others navigating their own pain. “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us,” Didion wrote in The Year of Magical Thinking. “I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”

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