Living With Anticipatory Grief

There are different kinds of grief. This unique sense of loss, which comes with waves of change, will likely become more common as humans face an increase in degenerative and aging-related illnesses.

By Emilie Le Beau Lucchesi

Tamara Hilliard learned in November 2017 that her husband, then 64, had amyotrophic lateral sclerosis (ALS), a fatal disease of the nervous system.

“I’ve been grieving since we got the diagnosis,” says Hilliard of Fort Worth, Texas. “For a long time, I’ve been sad, knowing that he was going to suffer, that he was going to die.”

Her husband, Jim, was an orthopedic surgeon and a former college football player for the University of Texas. His once hulking body soon began to deteriorate.  He was able to walk through 2018, although he transitioned to a walker and eventually a motorized chair.  “From Christmas 2019 on, he was completely dependent on me,” she says.

The progression was painful for Hilliard. Jim lost his ability to hold a fork, wash himself and, eventually, speak. “It’s so awful to watch someone you love lose something every day,” she says.  “Every day was a loss.”  

Social scientists describe an experience like Hilliard’s as anticipatory grief. It’s a grief process that involves not only dreading a loved one’s pending death, but also mourning the changes in daily life that occur as the person succumbs to illness.

In today’s modern world, multiple factors are combining to amplify occurrences of anticipatory grief. As life expectancies have increased and smoking-related deaths have diminished, degenerative illnesses associated with aging, such as dementia,  are increasing. Public health experts expect higher incident rates for degenerative diseases like ALS, dementia, Parkinson’s and some types of cancers in the coming decades. For diseases like dementia, in which an average of four to eight years stretches between diagnosis and death, a loved one can endure many months of anticipatory grief.

Understanding Grief

Anticipatory grief is a relatively new psychological concept and was first considered in Western literature by Erich Lindemann in the 1940s. He studied the deadly nightclub fire at Boston’s Cocoanut Grove, which killed almost 500 people.

“It was one of the first empirical studies on grief,” says Ken Doka, senior vice president of grief programs for the Hospice Foundation of America. “He mentioned that you could grieve a death that not only happened but is occurring.”

However, Doka says, scholars in the 1970s were divided in their views about anticipatory grief. Some scholars believed that anticipatory grief lessened the emotions a person felt once their loved one actually passed. “It was a hydrostatic view of grief – you only have so much grief and the more tears you shed before the death, the less you shed after the death,” Doka says. “That was unproductive. There was no research to support that.”

Social scientists have since learned more about anticipatory grief and now hold that it’s not only about the pending death of a loved one. “It’s not just about expecting a death, it’s about all the losses you experience along the way,” Doka says.

Loss of Life

Terminal conditions such as ALS or dementia involve incremental changes that alter a patient and their life for years prior to death. For loved ones, these changes are losses to the life they once shared with the patient and the source of anticipatory grief.

One 2018 study of anticipatory grief found that people caring for spouses with late-stage dementia had higher anticipatory grief than caregivers of loved ones in the earlier stages because their daily life had been altered more extensively.

Spouses in the late-end stage also had higher anticipatory grief than other caregivers, such as adult children, who weren’t life partners coping with the loss of living daily life together.

Anxiety and depression is associated with anticipatory grief, and for some people, there can also be difficulty making medical decisions for their loved one. In another 2018 study of people serving as the medical surrogate for a loved one in the ICU, spouses had worsened decision making than the surrogates who were either adult children of the patients or the parent to the patient.

Such studies are prompting scholars to call for clear and supportive communication with medical surrogates in ICUs, as well as additional compassion for people whose loved ones are in palliative or hospice care.

Evolving Grief

For Hilliard, grief was a complex and fluid emotion that changed along with her husband’s condition.

The diagnosis was a shock, and she says it felt in the moment like a sudden death, even though he was still alive. “You’re bombarded and you can’t believe it,” she says. “It was like dying.”

She mourned throughout his illness as his body changed and their daily life was altered. Then, she felt a new type of grief during the last six weeks of his life when he was incapacitated and could no longer speak. During that time, she says she remembers she wanted him to pass peacefully so that his suffering would end.

Jim died in September 2021, and Hilliard was left without her husband of almost 34 years. His absence has been a time for her to reflect on their life together. “Now the grief trickles out. Now I feel I grieve the Jim before he was sick. I couldn’t in the moment when I was taking care him,” she says.

She remembers the man she says was brilliant and had a witty, sarcastic sense of humor. She mourns the husband who insisted on having the last word in their affectionate banter by always saying, “I love you more.”

“I miss him, I miss him every day,” she says.

Complete Article HERE!

What a terminal cancer diagnosis is teaching this neuroscientist about the human mind

David J. Linden, a neuroscientist, writes in The Atlantic about how facing the end of his life is teaching him about the human mind.

By

Neuroscientist David J. Linden is dying.

But the impending end of his life doesn’t mean he’s done learning about the human mind just yet. Linden was recently diagnosed with terminal cancer. In a piece in The Atlantic, he writes: “I may be dying, but I’m still a science nerd.”

During a routine echocardiogram, doctors noticed something sticking up next to Linden’s heart that they thought was a hiatal hernia or a benign growth called a teratoma, he says. After the tumor was removed, a biopsy found it was a form of malignant cancer called synovial sarcoma that had grown into the wall of his heart — making it impossible to remove.

One way the biomedical researcher at Johns Hopkins University School of Medicine processes his diagnosis is by nerding out about it. His doctors showed him photos of his tumor and heart surgery to his excitement.

“It is empowering to be a nerd about something really grim, meaning my own terminal cancer,” he says. “But I think the more interesting thing is what it has led me to think about the human mind.”

After his diagnosis, he writes that feelings of anger about his shortened time came alongside gratitude for his love, relationships and career in neuroscience.

The fact that the human brain can occupy two mental states at once may be obvious for most people, Linden says, but it took his diagnosis for him to realize it.

In neuroscience, researchers believe people have a specific mental state at a given moment: sleepy or alert, exploring or pulling back.

“In truth, you can occupy more than one cognitive state at once, even if these states at first blush would seem to be contradictory,” he says, “like in my case, are gratitude and anger.”

Linden writes that there is no objective human experience: “All that we perceive and feel is colored by expectation, comparison and circumstance.” One example of this is people’s relative conception of time.

Time drags on while you wait in line at the Department of Motor Vehicles, he says, but it flies when you’re having a beer and conversation with a friend.

“All of our human perception is constructed. There is no objective experience in the world,” he says. “It’s all colored by our mood and our expectations.”

The concept of five years can feel different depending on where you are in life, he writes. One might think five years has a fundamental value that can’t change, but he knows that’s not the case.

“If someone had told me before my diagnosis that I had five years left to live, I would have been feeling deeply cheated and offended,” Linden says. “But now, with my prognosis of six to 18 months of life to live, the idea of five more years seems like an impossible gift.”

The human brain isn’t wired to comprehend our own death — that we will someday no longer exist, he says.

Linden can practically deal with his impending death by finalizing his will, getting his finances in order and writing recommendations for his trainees to help further their careers after he’s gone. But he finds himself failing to “deeply engage” with the idea of a world without him, he says.

“My mind skitters over the surface of this, and I don’t think that’s a personal failing,” he says. “I think it is telling us something about being human.”

When Linden entered the neuroscience field 43 years ago, he learned that the brain is reactive: Humans use their senses to make decisions about the world around them. One recent advancement in the field is the knowledge that the brain is always active and predicting the near future.

The brain spends a lot of time trying to figure out if other people are friends or enemies, or whether hunger is approaching, he says.

“The idea that the brain is constantly working to predict the near future presupposes that there will be a near future,” he says. “And I think in this way, our brains are hard-wired to have a problem with truly engaging with our own demise.”

Linden has been pondering questions about immortality and how our inability to engage with our own deaths has influenced human history in the form of religion. Almost all of the world’s major religions believe in an afterlife, reincarnation or some form of an “immortal soul” that lives beyond the demise of the body, he says.

“What I suspect is … that this is a result of the fact that our brains are hardwired to continuously predict the future and thereby to make it very difficult for us to imagine ourselves gone,” he says. “I think that this is the way this manifests in the species, the way it manifests societally.”

Considering the extent of religion’s impact on human society, it’s “astonishing” to think about how much this one aspect of the brain has molded humanity, he says.

Taking a step back and observing the human mind in this way gives Linden comfort in his final days.

“To me, thinking about the way my own impending death informs me about the human mind is a way for me to take control of my situation — to feel a sense of agency — rather than just being passive and borne along by this medical problem,” he says. “I feel that it’s given me a way to engage, to think to the end. And that’s an enormous gift.”

Complete Article HERE!

We Need a New Paradigm for Final Wishes

BY Judith Graham

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill—living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a co-author of a recent opinion piece advancing this argument in JAMA.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning hasn’t been shown to ensure that people receive care consistent with their stated preferences—a major objective.

“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes—such as receiving treatment at home—simply aren’t available.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California–San Francisco. This progress shouldn’t be discounted, she said.

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future, and are better able to communicate with their families and clinicians,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values, and wishes for the future with his wife and palliative care specialists.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5–4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations, and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier of Mount Sinai.

She noted that only 37 percent of adults have completed written advance directives, which in her view is a sign of uncertainty about their value.

Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life and palliative care.

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.

“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with COVID-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing COVID and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning—naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form.

“This won’t always be your spouse or your child or another family member: It should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation ProjectRespecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions.

The Centers for Disease Control and Prevention also has a comprehensive list of resources.

Complete Article HERE!

Pregnancy apps and online spaces fail to support individuals grieving a pregnancy loss

– Here’s what to do about it

Social technologies perpetuate a single idea of what constitutes a pregnancy.

By

Approximately 1 in 4 pregnancies in the United States ends in loss. Pregnancy loss, also referred to as miscarriage, is a common reproductive health complication.

Many experience this loss as a significant life event, with a “before” and an “after.” It can cause depression and post-traumatic stress disorder. Yet society largely stigmatizes and dismisses it by not treating it as a loss that deserves to be grieved.

I research the social implications of technology. For the past several years, I’ve been investigating the intersection of pregnancy loss and social technologies. Search engines, social media, online support groups and pregnancy and fertility tracking apps are some of the technologies people use to manage pregnancies, share experiences or exchange social support.

My recent research shows these technologies often do not account for pregnancy loss and, as a result, can cause re-traumatization and distress.

Harmful designs and algorithms

In a recent study, I conducted in-depth interviews with women in the U.S. who had recently experienced pregnancy loss. I found that pregnancy tracking applications failed miserably in considering pregnancy losses.

Woman faces her laptop, head in hands.
‘Oh, please stop.’

A participant told me, “There’s no way to tell your app, ‘I had a miscarriage. Please stop sending me these updates,’ like, ‘This week, your baby’s the size of a banana or whatever.’ There’s no way to stop those.”

Similarly, advertising algorithms assumed all pregnancies lead to the birth of an alive and healthy baby. Another participant told me, “I was getting ads for maternity clothes. I was just like, ‘Oh, please stop.’”

The design of mobile apps tells a similar story. I conducted an analysis of 166 pregnancy-related apps and found 72% do not account for pregnancy loss at all, 18% offer an option to report a loss without providing any support, and the remaining 10% passively link to outside sources.

Another tool people use during pregnancy and loss journeys are online support groups. While groups dedicated to loss can be sources of social support where people may find emotional validation, connect with others and feel seen and less alone, I found they can also foster invalidating and harmful experiences.

One participant reported seeing questions “like ‘Can you eat this certain thing while pregnant?’ You get some people who say, ‘Yes, I ate that all through pregnancy.’ Then you get some people who say, ‘I can’t believe you’re doing that to your body, that’s harmful for you.’”

Overall, the design features and algorithms that underpin content and interactions do real harm by perpetuating a single idea of what constitutes a pregnancy – one that is smooth and leads to a happy ending. By not accounting for pregnancy loss, I contend they contribute to its further stigmatization.

My work shows how technology design reinforces stereotypes about experiences like pregnancy loss – and sustains social inequities like marginalization and stigmatization. This, in turn, makes it hard for those experiencing loss to find the resources and support they need.

A more humane approach

If you are someone who has experienced pregnancy loss, I am sorry for your loss. Please know that you are not alone. I hope this article helps validate and make visible some of your frustrating experiences.

If you know someone who has experienced a pregnancy loss, know that the harms and challenges I described above are only some of the frustrations they may face. Acknowledge their loss. Ask how you may be able to support them. Get them meals, offer to pet sit or babysit for them, listen to them, sit in their sorrow with them. Know that holidays and anniversaries tend to be tough. Do not say “you will get pregnant again.” Finally, remember that lesbian, gay, bisexual, transgender and queer people also experience pregnancy and loss.

If you are a designer, developer or someone who makes decisions about products and advertising algorithms, I hope this research illustrates some of the real harms users may experience as a result of using products to manage intimate personal experiences like pregnancies. Please consider designing products that consider the full range of pregnancy and other human experiences. Remember that considering pregnancy loss as an outcome does not mean finding other ways to profit from your users’ loss and grief.

Complete Article HERE!

Meet the end-of-life angels who prepare terminally ill people for the day they die

Maggie’s counsellors help those with terminal cancer cope with fears, worries and practical issues

Mandie Malcolm was just 26 when she found lump on my breast

by

Lisa Punt doesn’t cry at work. She has never cried at work, even though work, for Punt, is counselling people with terminal cancer and the friends and families of people with terminal cancer.

It must be about as difficult and heart-rending as work can be. Most of us would surely feel tearful when helping people face their own death. And not just their death, but all the concomitant details associated with it, big and small. Who will look after the children? What will happen to the house? What will my spouse do without me? And who’ll water the plants?

What is required of Punt, however, is calmness. “I don’t think I’ve ever been tearful within a consultation or within that interaction. And I think the reason for that is that we [the counsellors] bring to that therapeutic relationship an element of empathy, so we can see what they’re feeling, but at the same time we try very much to step outside actually feeling that emotion that they are experiencing.”

It’s a tough job, Punt says, but it is also a meaningful one. “We see the difference we make.”

Sometimes, though, a particular case will hit a counsellor harder than usual. In those cases, Punt tells me, that counsellor can talk about it with their colleagues, unpicking the feeling and carefully managing it. This process ultimately helps them support the patients and families who need their help. “We are there in a professional capacity,” says Punt, “and we are there to deliver formal, psychological, emotional support, which is part of our training.”

Punt, 51, is the centre head and a cancer support specialist at Maggie’s Cambridge. Maggie’s Centres are places where people with cancer – and their friends and families – can come for support and advice. The centres are beautifully built, designed to be an antidote to the strip-lit hurly-burly of a typical hospital. Within them, staff offer services such as yoga classes, financial advice and, most importantly, a friendly ear.

Maggie’s Cambridge, which is where Punt takes my call after delivering a counselling session, is in the grounds of Addenbrooke’s Hospital. The centre is temporarily housed in former accommodation for hospital staff, but Punt and her colleagues are working towards building a permanent home. “It’ll hopefully be very soon,” she says.

Diagnoses of terminal illness, says Punt, affect people very differently. “When someone walks through the door, we’re trying to work out, ‘What are their major concerns?’ When they’re faced with a terminal disease, they may very much have huge levels of anxiety, fear and worry. There are things like finances, or, ‘How is my partner going to manage when I’m not here if I’ve always sorted out the car insurance or the health insurance?’”

First, the warm, down-to-earth Punt helps her visitor work through their fears around death and dying, which must be no mean feat. The visitor might then be in a better position to address their more practical concerns.

People worry about mortgages, credit cards and life insurance. They wonder whether to retire on the grounds of ill-health and take their pension, or go off sick to ensure a death-in-service payout for their next of kin. They are concerned about funeral arrangements. They might be disinclined to write a will, feeling it to be an acceptance of defeat, but if they seek guidance on that they are offered it, often being given time with a solicitor, free of charge. “Once these things are done,” says Punt, “you have more cap-acity for life, even in the face of death.”

It is breadwinners who tend to worry the most about money issues, says Punt. They are more likely than not to be male, but it is the fact that they are the main earner, rather than their gender, that seems to be the strongest determinant of concern about a family’s financial stability.

Men are less ready to be emotionally voluble, says Punt, and are more likely to attend a support group if its stated purpose is something other than just talking. That purpose can be something as mundane as gardening or sharing bacon butties, but its effect can be to encourage conversation that is as valuable to men as it is to women.

Men and women alike wonder about their partner finding someone new, and it’s not uncommon to feel anxious about being replaced. You might call this the “I bet you’ll end up with Barbara” worry. As Punt puts it: “When children are involved, that’s a very emotive situation. Perhaps a mum is dying and there are two young children who are going to be left behind. Who is Dad going to meet and who’s going to be in the shoes of Mum? That can be a real concern.

“But then, on the other hand, there may be someone who actually gives permission to their partner to go out and find somebody and to not be lonely. It’s such an individual thing. I think the beauty of what we’re able to do, and the privilege we have, is that we can sit with somebody, whatever their fears and worries and concerns are about when they have died, and we can work with them.”

Punt tells me about a family she worked with fairly recently (we have changed some details for the sake of their privacy) where a married man with a son and daughter was told he had a year to live. It was his desperate wife who came to Maggie’s first, recalls Punt. “He was totally in denial and just carrying on as normal and she was trying to sort everything out.”

The husband eventually came for counselling, too. Punt and her colleagues then supported the family in starting a range of conversations. There were finances to discuss, plans for the garden and some decorating that the man had wanted to see through. There was their children’s education, at school and at home. “He wanted to show his son how to shave,” Punt says.

Where appropriate, the children were involved in these conversations. They were given time with an art therapist, who helped them articulate their emotions in a gentle setting. They were given the option of sitting with their father till the end, and they took it.

The man died at home, says Punt, surrounded by his family. “I think the last few hours were not desperately comfortable. But I think it was as good as it could be.”


What will happen to my family after I am gone?

Mandie Malcolm, 32

I had just turned 26 when I discovered a lump on my breast. Because a lump can be any of several things, I wasn’t too worried. What a shock I got when the doctor said it was cancer. Worse, it was secondary cancer: it had spread aggressively. I was told soon after the diagnosis that I probably had a couple of years to live.

It was petrifying. My mum was with me when I got the news, but the worst thing was breaking the news to friends and family. We’re very close, and they’re all supportive, but I knew it must be hard for them as well. I was always thinking about dying and leaving them behind. At the same time, there was so much I still wanted to do, like travelling the world.

Mum started using Maggie’s Edinburgh before I did. When I went myself, I was nervous on the way over, but from the moment I walked in they were all so friendly. Thanks to Maggie’s I’ve had loads of one-to-one counselling sessions and group sessions with other people going through the same as me. I go to yoga classes at the centre, and I’ve had loads of help with my finances. There are horrible, complicated forms to fill out in order to get benefits, but the adviser from Maggie’s helped me with the paperwork and took all the pressure off. My family gets a lot of support, too.

The diagnosis was six years ago and I’m still here. I have managed to get through everything I wanted to do, and now I’m just adding things to the list. After chemotherapy, I had hormone treatment, and because it was easier on my body I was able to do things like visiting Australia. I’ve run a marathon and I’ve been writing a column for my local paper, The Falkirk Herald. After my diagnosis, I thought that I’d never get to plan my own wedding, just my funeral, but I got married last year – it was a really special day.

A lot of people say, “I know what you’re going through”, but they don’t really. Through Maggie’s I’ve made a friend, Leslie, who’s in the exact same position as me, and it’s nice to be able to speak to somebody like her. One of the worst things is that you feel out of control of what’s happening to your body, and that time’s ticking away.

My outlook on life has changed hugely. Because I’ve spent so many days in bed and not feeling great, I really appreciate feeling good. I appreciate every day I’m given and I want to be surrounded by nice people, enjoying life rather than putting things off. Just going for a long walk with my dog is something that means a lot to me.

I’ve had a lot of different treatments and am probably starting to run out of them. Things have been better than the doctors thought, but I’m still realistic. Every extra birthday is special.

Complete Article HERE!

A Comedy About Death

– KnifeRock’s ‘Moon Manor’ Official Trailer

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“If I can’t be me – and I mean everything that that means – I just don’t want to be.” Good Deed Ent. has revealed an official trailer for Moon Manor, a “comedy about death” made by the filmmaking duo known as “KnifeRock” (Erin Granat & Elizabeth Brissenden). This first premiered last year at a festival, and will be dropping on VOD starting in March to watch. Today is Jimmy’s last day alive. His Alzheimer’s is worsening, so he’s decided to die like he has lived – with intention, humor, and zest. In his last day on Earth, Jimmy will show an obituary writer, his death doula, his estranged brother, his caretaker, a surreal being, and guests at his fabulous “FUN-eral”, that perhaps the art of living is the art of dying. It’s “inspired by a true-ish story.” The film also marks the first original score by Coldplay producers The Dream Team. Moon Manor stars Jim Carrozo as Jimmy, with Debra Wilson, Richard Riehle, Lou Taylor Pucci, Reshma Gajjar, Galen Howard, Ricki Lake, and Heather Morris. Looks so wacky and fun and clever and fresh! I dig it.

Sometimes learning how to live, is learning how to die. On his last day alive, Jimmy (Jim Carrozo) will show his estranged brother, a salt-of-the-earth caretaker, sharp-witted death doula, an obituary writer, a cosmic being, and the guests at his FUNeral that sometimes the art of living just may be the art of dying. An exploration of what it means to have a “good death” and inspired by the life stories of 84-year-old lead actor James Carrozo. Moon Manor is co-written and co-directed by filmmakers Erin Granat & Machete Bang Bang (aka Elizabeth Brissenden – director on the series “I.R.L.”), collectively known as “KnifeRock”, both making their feature directorial debut after a few short films previously. Produced by John Humber, Bay Dariz, Erin Granat & Machete Bang Bang. Featuring a score by Coldplay producers The Dream Team. This first premiered at the 2021 Atlanta Film & Video Festival last year. Good Deed will debut Moon Manor in select US theaters + on VOD starting March 11th, 2022 coming up soon. Drop by the film’s official site.

Complete Article HERE!

What Is Caregiver Burnout

—And How Can You Prevent It? Here’s What Experts Say

Frequent expressions of anger, sadness, and frustration are possible signs of caregiver burnout.

According to Rosalynn Carter, former first lady of the US, there are only four kinds of people in the world: “those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” As a decades-long champion for the rights of US caregivers, Carter knows what she is talking about.

There are now an estimated 53 million unpaid caregivers—individuals who care for their elderly, chronically ill, or disabled loved ones—across the country, according to the most recent data from AARP. That means one in five adults in the US acts as a caregiver.

With many families unable to pay for professional care, assuming the role of caregiver is often a necessity rather than a choice. “Families are expected to provide extraordinary care to people with serious illnesses—in most cases without access to disease education, an assessment of their own needs and abilities, [and] the skills to manage complex medical regimes or challenging behaviors and functional declines associated with, for instance, a person living with dementia,” Laura N. Gitlin, PhD, an applied research sociologist and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, tells Health.

And that can be hard, which means that those who care for their parents, siblings, children, or partners might experience caregiver burnout.

What is caregiver burnout?

A caregiver helps their loved one with daily activities like preparing meals, running errands, bathing, and performing medical tasks such as setting up tube feedings and giving medications. And as if that’s not enough, they often bear the weight of other types of stress, like having to deal with finances and manage doctor appointments for their loved one.

This collective stress is often referred to as caregiver burnout, and it’s all too common, according to Gitlin. “It’s a real phenomenon and shouldn’t be ignored,” she says. “It’s when a caregiver reaches a state of physical, emotional, and mental exhaustion due to ongoing (and in most cases extraordinary) and constant care responsibilities.”

Caregivers who reach this point may feel hopeless and have negative feelings about their situation. If it’s not addressed, it can lead to depressive symptoms, warns Gitlin.

What causes caregiver burnout?

The possibilities are wide—basically, anything you perceive as a stressor in your role as caregiver can lead to caregiver burnout, Martinique Perkins Waters, PhD, assistant professor in the Department of Behavioral Sciences at the University of West Alabama, tells Health.

The burnout could be sparked by the extra financial expenses due to the medical bills of your loved one’s care or all the factors that go into managing medical care, such as scheduling appointments, talking with insurance companies, getting to appointments, refilling prescriptions, and advocating to see specialists. The burnout could be triggered by the emotional toll of watching someone you love in pain and needing to provide constant support to them. Or, maybe the burnout stems from the frustration of feeling like you are losing your own identity as your career, hobbies, and personal goals may be shifted or even stopped due to your caregiving role.

Caregiver burnout often develops after not getting the help you need or not having an opportunity for any respite—or time for yourself—to recover from your care responsibilities, adds Gitlin. Being a caregiver for a loved one can make it difficult to switch “off” from your role, making it hard to find time for sufficient sleep and positive lifestyle behaviors like exercising.

While burnout can happen in any caregiving situation, somebody providing care for a person living with dementia may be at particular risk, Andrea Gilmore-Bykovskyi, PhD, assistant professor at the University of Wisconsin-Madison School of Nursing, tells Health. “Unfortunately, caregivers of people experiencing dementia in particular are often under-prepared and under-supported in their caregiving roles,” she says. “Knowing when, where, and how to seek help can be overwhelming, which can further compound the strain caregivers may be experiencing. It is often more challenging later in the disease course, when the needs of the person with dementia may be more challenging to meet.”

What are the signs and symptoms of caregiver burnout?

Some of the signs of caregiver burnout are very clear, according to Perkins Waters. “Frequent expressions of anger, sadness, and frustration are big red flags, especially when you don’t usually react in this manner,” she says.

Other signs are less clear, as they may manifest as symptoms that look like common chronic illnesses. This may be especially true depending on race. For example, research led by Perkins Waters and published in The Journals of Gerontology found that while African American caregivers are less likely to report being burdened by their caregiving role, the group is actually more likely to have physical manifestations of their caregiving burden, such as increased blood pressure, complications with other chronic illnesses, and cardiovascular issues. “We also know that these issues occur more frequently in the African American population in general so it can get overlooked as a sign of caregiver burnout,” Perkins Waters points out.

Symptoms of depression and anxiety are also very common. “If you are experiencing hopelessness, changes in sleep and/or eating habits, loss of interest in things you usually enjoy, lack of motivation, and feelings of overwhelm or general distress, it is possible you have reached that burnout point,” Perkins Waters says.

How can you prevent caregiver burnout?

Because its repercussions can be severe, preventing burnout is crucial. Perkins Waters’s research found that caregivers who felt that they were under a lot of strain had poorer health outcomes compared to caregivers who felt little or no strain.

“A major contributor to caregiver strain, and ultimately burnout, is the lack of easily accessible systems and resources that support caregivers in these roles,” says Gilmore-Bykovskyi. “For these reasons, it is really important for caregivers to seek support early and often, and even before they feel they need them—so they get help long before the point of burnout.”

This might mean joining a support group, creating a schedule to give you time to yourself every day, seeking professional help from a counselor, or simply taking another person up on their offer of help. If you have a solid support network and regular breaks from your caregiving responsibilities, you can reduce your risk of getting to the point of complete burnout.

“Respite is extremely important,” Perkins Waters says. “If possible, ask members of your family to assist with care. Even if they’re not close enough for day-to-day respite, they can make phone calls for services, search the internet for resources, or even have food delivered to the house so you have one less thing on your to-do list. If you attend a faith-based organization, more than likely there are members or a ministry that can stay with your loved one briefly, help with transportation, assist with groceries, or just come by to talk.”

A good starting point is your local agencies that advocate for senior services. “People often think of the Department of Human Services [DHS] as mainly for child services, but there are adult service programs as well,” says Perkins Waters. The DHS may be able to connect you with resources like adult day care programs, which support your loved one for a short time while you run errands or just go back home to rest.

There may also be non-profits or community organizations in your area that offer respite care. For instance, Alabama Lifespan Respite Resource Network offers vouchers that caregivers use to pay individuals to be with their loved ones in the home for short-term relief and provides resources for mental health counseling and caregiver support groups.

Even if you get this help for your caregiver duties, you still must make it a point to care for yourself, according to Perkins Waters. This means going to routine doctor appointments, talking with a counselor, finding a support group, hanging out with friends, making time for physical activity—in short, all the physical and mental care items we know we are supposed to do.

This is particularly important for caregivers who are parents. As Perkins Waters notes, a lot of caregivers juggle raising children and caring for aging parents. “You may go into the caregiver role expecting ease, as you have raised young children,” she says. “But it is an entirely different situation when you are older yourself and you are caring for an adult who likely raised you. There is more history and experience on both sides; this is a unique journey and taking care of your health will help better prepare you for it.”

If you have the means to pay for it, Gitlin highly recommends at least one consultation with a geriatric social worker who specializes in referral and linkages. The social worker can help you assess your caregiving situation, deal with stressors, and come up with a plan. Being a caregiver is never going to be easy, but it can be easier with the right help and support in place.

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