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Challenging Cultural Norms About Death to Reframe My Grief

By Hannah Velten

I denied my grief for 15 years. My brother, Christian, had disappeared in Africa while traveling alone in 2003. But he wasn’t dead. He was still alive, just having problems that meant he couldn’t or didn’t want to return home. That’s what I told myself.

Part of me knew, though, that he was dead. But those hulking great feelings of panic, terror and abandonment would only surface on anniversaries and birthdays. Then I’d bury them and concentrate on life again. I didn’t know what to do with these feelings. I couldn’t label them as “grief,” because we had no news to say he was dead. But now I can see I was grieving. Of course I was. I’d been abandoned by my soulmate, whether he was dead or not.

The label for this type of grief would be “anticipatory grief,” but when you’re in the throes of searching for a missing person it feels disloyal to accept grief. I had also invested too much of myself and my time in trying to find him, via social media and media exposure, to stop and admit it was a wild goose chase. I was determined to find him. I had not been abandoned by him, and I certainly wasn’t going to abandon him.

But that’s what I was feeling. Abandoned. Left behind. Lost without direction. Yet years later, in 2018, when I did finally accept that Christian was dead, I had no feelings of abandonment. Why? Well, he’d been drugged and drowned all those years ago — he’d never meant to abandon me, or anyone — and, although he is no longer in the physical world (and his body has never been retrieved), he and I have a closer relationship now than ever before.

It’s a leap for most people because of the cultural norms we hold about death being the end of life. The end of the relationship. Grief, I believe, has its roots in abandonment. If you think you’ve been abandoned, you feel lonely, angry, distrustful and fearful. Depending on how your loved one died, and the relationship you had with them, you might also feel anger, guilt, shame or any number of other emotions towards yourself, them or others.

Abandonment is something no one wants to deal with, so when death affects us (and no one is immune), we label it “grief.” Grief is commonly understood — it’s expected when someone dies. There are stages of grief; there are books written about it. But what if grief is actually one thought: “I’ve been abandoned”?

We’ve all been abandoned at some point in our lives, and it’s painful. The first time I lost Christian was when he left for boarding school; my trust in him, and everything, shattered. Loss affects us emotionally, socially, financially and mentally — the death of a loved one is no different.

“Why have you left me behind?”

“What am I supposed to do without you?”

Common thoughts; well, they were my thoughts anyway. But the reality of death, in our experience, is that Christian didn’t, and hasn’t, abandoned me at all. He’s still perfectly alive, just in another room.

To get a full connection, like Christian and I have, I realized we needed to clear the “gunk” between us, which means releasing the fearful feelings between us — the anger, the mistrust, the shame, the hurt. Death brings these unhealed wounds to the surface, even in the best of relationships.

Through mediumship sessions, we’ve been working through our sibling relationship for almost a year — understanding and forgiving each other — when he was still physically missing in Africa. He’d repeatedly told me he was so changed, after being in Africa for 15 years, and that it would be a shock for us all on his return. He wanted to know that he could trust me, that I would protect him and look after him. That I would still love him whatever had happened. As I told him I loved him whatever he’d done and whatever he was now, I felt the unconditional love passed between us.

With clarity gained, Christian’s been free to move into the Light. This might have felt like another layer of abandonment, but because there was/is unconditional love between us, Christian went from being my brother to being my soul-brother — a wiser, all-knowing, ageless and eternal presence in my heart. He’s still my brother in the way we speak with each other, in the way he’s with me and the way he interacts with others.

At this point, if you are grieving and can’t seem to move on, ask yourself, “Do I feel abandoned?” If the answer’s ‘Yes’, you may just have your key to healing…

Complete Article ↪HERE↩!

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The Rising Cost of Not Living

by Mona Chalabi

Jerry Burton was a frugal man. So frugal, in fact, that his possession of an organ donor card was motivated by his disdain for waste. While he was still in hospice care, Jerry made it clear to his son and daughter-in-law that they should shop around to get a good deal on his funeral. They did. In total, the transportation of Jerry’s body, the cremation, and the pickleball tournament that he wanted to be held before his service cost $695. Such bargains are a rarity in America’s modern funeral industry.

The median pricetag of a funeral in 2017 was $7,360—a cost that would take the typical US worker five months of labor to cover. Because of these high prices, many families are panicking at the same time that they are grieving. 

The death of Kara Killeen’s father was followed by calculations that provide a depressing tally of the average American’s struggles. Student debt bills meant that Kara and her sister had less money in the bank (and much of her dad’s retirement money had gone toward helping them cover those repayments, as well as the family’s mortgage). Limited care provision under Medicare meant that Kara’s mother had lost her job to look after her sick husband (and since her job had been writing for the local newspaper, there wasn’t exactly an abundance of new vacancies for her to apply for later). And, like many American families today, the Killeens don’t all live in the same city, so there were flights to think about, in addition to the funeral costs.

Fortunately, an aunt was able to cover Kara’s flight back from Scotland to Ohio. Unfortunately, the fact that Kara needed an intermediary in another time zone to book her travel meant that she made it back two days after her father’s death. Once reunited, the family looked at their funeral options; they were shocked at the prices they were hearing. A reception in a local bar where her dad had been a regular customer would cost $3,000, including catering. They could have held it at their family home for free, instead, but that wasn’t really viable: Kara had come back to discover the house where her mother had cared for her dying husband was a messy cross between a hospital and a home. An urn would have cost $275, programs $160, and an obituary $200, according to the latest averages from the National Funeral Directors Association.   

In the end, with her aunt’s financial support, Kara’s family was able to pay for the cheapest option available: Kara’s father was cremated and his remains were returned to the family in a plastic bag, and there was no funeral. The family still faced a bill for $2,000. “His final mark on the world was just to not have enough money,” Kara told me, bitterly. Funerals are supposed to be a chance to grieve, mourn, and begin the process of emotional recovery after a death; but when money is tight, they can feel like a second trauma. 

In the movies at least, funerals are a chance to meet old friends that you didn’t even know that your dearly departed had. To hear stories that you had never heard before. “You expect everyone to be there,” Kara said. We infer much about a life from a funeral. For no service to be held might imply some secret shame. A small gathering might indicate a lack of popularity. Cheap flowers suggest, well, cheapness. Each of these sentences could just as easily apply to another of life’s landmark social gatherings—weddings—except that marriage customs have changed faster than our death customs. 

It is a matter of personal prerogative whether a couple spends their life-savings on a Star Trek-themed extravaganza or just heads to city hall with two strangers pulled off the street to act as witnesses. That choice is more likely to be seen as a question of taste rather than of moral character. But when the social occasion requires people to be present to honor someone who is absent, then the rules change.  

The desire not to skimp (or at least, to be seen not skimping) leads us to make bad decisions according to Joshua Slocum, the executive director of the Funeral Consumers Alliance, a nonprofit watchdog. “It’s a distressed purchase,” he explained. “No one wants to buy a funeral.” Our decisions are clouded, not just by grief but by the fact that there is no requirement for funeral homes to email you a pricelist or post one on their website. “I can’t think of any other business sector that doesn’t allow you to shop around,” Slocum added. So families will simply choose whichever funeral home they used the last time they had to hold a service. 

What those families rarely realize is that their local funeral home, once run as a “mom-and-pop” family business, is now probably owned by a Wall Street firm. Service Corporation International, or SCI, for example, operates 1,477 funeral service locations and 483 cemeteries across the country, and is worth $13.3 billion (for comparison, the countrywide clothing chain Gap Inc. is worth $8 billion). Shareholders expect dividends and they have to come from somewhere: according to Slocum, SCI charges between 40 percent and 75 percent more for its services than independent funeral homes do. 

The price of dying is also high because there are simply too many funeral homes. Slocum gives me the example of Montpelier in Vermont, the smallest state capital (by population) in the country. The city has two fully serviced funeral homes that, between them, handle an average of seventy-six deaths a year. These businesses have to keep prices high if they want to cover their mortgages and pay their staff. 

I asked Slocum why he became involved in funeral consumers’ rights. He replied simply, “I love Mitford.” It was after reading Jessica Mitford’s classic muckraking polemic on the American funeral industry, The American Way of Death (originally published in 1963), that he became fascinated by the industry and wanted to know more. Little of substance has really changed in the business since Mitford’s book was published except for the escalating prices. Back in 1960, the cost of a funeral was around $700—still a considerable amount of money in real terms, amounting to about seven weeks of a typical worker’s wages at that time (as noted above, by the same measure, today’s figure is at least twenty weeks).

Funeral charges have risen for the same reason that prices have always risen: a disconnect between demand and supply. For a combination of reasons—cost, changing mores, and environmental concerns—more consumers now want their remains and those of their relatives to be burned rather than buried, but the US funeral industry is largely stuck in the past. In fairness, this cultural change has come relatively quickly: in 1960, when Mitford was researching her study, just one in twenty-eight people who died in the US were cremated; today, it’s one in two—half of all funerals. Yet mortician schools still place a heavy emphasis on embalming skills, and more than two thirds of states (thirty-six out of fifty) require funeral establishments to maintain an embalming room (or access to an embalming preparation room); and nearly half of states require a funeral director to be a certified embalmer. Those laws directly contribute to higher prices. In a study published last year, two economists at Kenyon College in Ohio, David E. Harrington and Jaret Treber, calculated that embalming regulations in New York State cost consumers an additional $25.8 million each year.

Although American business traditionally hates regulations, regulating how companies handle and dispose of cadavers makes sense—there are too many public health and public safety considerations involved, let alone consumer rights, for this to be otherwise. “Now, death is seen as an emergency: a dead body has this association of being a biohazard,” explained Caitlin Doughty, who started working in deathcare in 2008 and today owns and runs Undertaking LA. This contrasts sharply with the way a decease was handled 150 years ago, in a pre-industrial era. “Death was a domestic task,” she said. “The women would prepare the body, the men would prepare the casket.”

States began to legislate to control funeral directors around the same time they set professional standards to govern doctors and lawyers, in the mid-nineteenth century. The main aim was to protect the vulnerable—in this case, the bereaved—from charlatans. But many state laws about deathcare now appear outdated or nonsensical. Four states prohibit funeral homes from serving food and beverages entirely, and in New Jersey until very recently, homes could only serve water and peppermints (it is unclear whether such rules arose for reasons of decorum or public hygiene). In five states, funeral directors have exclusive rights to sell caskets, in effect a protectionist measure that blocks cheaper competition—such as Amazon’s “Premium Cardboard Coffin for Adult Funeral,” for just $235.

The outlook seems bleak for customers with few choices and facing high costs. But after sixteen years working in funeral consumer rights advocacy, Slocum doesn’t see it quite this way. “There are two sides to issues like this,” he argues, “and in order to make funerals that are affordable, you need to have both oversight of the industry by the government, but you also need consumers that act with agency rather than being helpless victims.”

It is difficult, though, to think of any other purchase that is quite so unavoidable as paying for a funeral, nor one that demands decision-making at a time when emotional distress is a given. One way to feel empowered in the way that Slocum suggests is to lean, if you can, on your community.

Askia Toure and his two sisters, Sakina and Zahira, were able to turn to the Islamic Society of Greater Houston, Texas, when their mother died of uterine cancer in 2015. The society helped Sakina, who was the only sibling that lived close to her mother when she died, to wash and shroud her mother’s body according to Islamic practice. Two days later, their mother was placed in a plot she had pre-chosen. “That’s how we’ve been raised,” Askia said, “to bury each other with dignity as soon as possible for the least amount of pain or debt inflicted on those who are still here.” When families can’t cover the cost, the community that makes up the membership of the Islamic Society pitches in. Even before Askia’s mother died, the society’s members had contributed to cover the medical costs of her final illness, using a crowdsourcing page. 

Crowdfunding for the funerals themselves is now common. Just one site alone, Go Fund Me, boasts that every year it raises $330 million for some 125,000 memorials (a level of contributions that averages out at $2,640, about a third of the typical funeral’s costs). These sites are especially important for families like the Toures because black American households have less wealth than any other racial or ethnic group in the country. When a large, one-off expense like a funeral needs to be paid, the choice facing such families is often brutally simple: ask for help or sell the car.

Even with a community behind you, bargain-hunting is still important. Non-funeral home options are still limited—and, in fact, can often be even more expensive. You can, it is true, order a cardboard casket from Amazon for as little as $235, but then what? Most states have strict laws about where and how you can dispose of a body. Shopping around for professional funeral services is still the better option for most people. “You can find prices that range from $700 to $4,000 for the same basic service,” said Slocum. “The grief will come, but the terror [of financial ruin] doesn’t have to.”

Funerals are hard because they force us to manage a very practical matter that is simultaneously a profoundly emotional one—to make arrangements amid tumultuous feelings. One thing that can help is to have talked to a loved one before she dies about the kind of funeral she’d want. When it was time for the conversation that Jerry Burton wanted about his desire for a cheap send-off, his daughter-in-law, Melody Burton, a marketing and communications manager from Gresham, Oregon, was apprehensive. But it turned out to be a blessing, not a trauma. “You don’t get to talk about things that are so deeply personal like that very often,” she told me. “It was a beautiful time.”

Complete Article ↪HERE↩!

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The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article ↪HERE↩!

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LGBTQ Elders Are More Likely to Be Socially Isolated, Suffer from Dementia Than Straight Peers

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A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community.

To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia, and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity.

Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline.

More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study.

A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services.

Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

Complete Article ↪HERE↩!

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The case for hospice care

By BETH SLEPIAN

A recent analysis published by the New England Journal of Medicine revealed that for the first time since the early 20th century, more Americans are dying at home than in the hospital.

According to the report, in 2017, 30.7% of Americans died at home, while slightly fewer (29.8%) died in hospitals. Another notable statistic from the study is that between 2003 and 2017 the number of Americans who died in hospice-specific facilities grew by 41%, from 0.2% of deaths in 2003 to 8.3% in 2017. According to the National Hospice and Palliative Care Organization (NHPCO), 47.5% of New Hampshire residents on Medicare who died in 2017 were receiving hospice care benefits.

This data does not come as a surprise to those of us who work in hospice care and have the honor of helping families navigate the end-of-life experience.

Up until the mid-1900s, it was routine for people to die in their homes, cared for and surrounded by loved ones, but by the 1950s, more Americans died in hospitals. The concept of “death with dignity” was introduced in the United States in the early 1960s, sparking the movement toward hospice care.

The hospice movement gathered steam in the late 1970s with the formation of the National Hospice Organization, and by the mid-1980s, the federal government formalized the hospice benefit for people on Medicare.

Concord Regional VNA has been caring for people in their homes for 120 years, providing nursing, therapy, personal care, homemaking and other services to people of all ages. For more than 30 of those years, we have provided specialized end-of-life care, guidance, and support to patients and families. In 1994 we expanded our hospice service by opening the first Hospice House in New Hampshire on Pleasant Street in Concord. We have served thousands of hospice patients and their families over the years, including nearly 1,000 patients in 2019.

While it is true that hospice care comes into play toward the end of a person’s life, there are many common misconceptions, such as:

■ Hospice care is only for the last few days or weeks of a person’s life;

■ It is only for people with cancer, people in severe pain or those who have a “do not resuscitate” order;

■ People on hospice do not receive treatment, they’re just kept comfortable with medication;

■ Hospice is a “place” where a person goes to die;

■ Hospice hastens death;

■ People on hospice must give up seeing their primary care providers;

■ Hospice care is focused on the patient and ends when the patient dies.

Hospice care is much more than meeting patients’ medical needs. Hospice care empowers patients to have a voice in their end-of-life experience, and to help them through it with as much comfort, grace and dignity as possible. It is about compassion – for them and their loved ones.

Some people choose to begin receiving hospice care in the final weeks or days of a terminal illness, but it is not unusual for patients to begin hospice care many months before they eventually pass.

People who receive hospice care through Concord Regional VNA benefit from individualized care coordinated with their care team, which may include their primary care provider and other clinicians. They may receive nursing care, physical and/or occupational therapy, pain management, spiritual care, social work , including emotional support and companionship – all in the place they call home, which could be a private residence, an independent living or assisted-living community, or a skilled nursing facility. Those who need more intensive care may opt to receive care at Hospice House.

Equally as important in this journey are the caregivers, who are most often the patients’ loved ones. Hospice care is about them, too. In addition to day-to-day assistance with patient care, loved ones may receive emotional and spiritual guidance and support from our counselors and spiritual care providers; help with end-of-life planning; much-needed respite care; and myriad other services. And it is important to note that hospice care does not end when a patient dies – our bereavement counselors and support groups help loved ones as they learn to cope with their loss for as long as they need us.

Hospice care is also about volunteers. The hospice movement was started by volunteers and they remain a crucial component to this day. In fact, Medicare requires that volunteers provide at least 5% of total patient care hours, which can take the form of direct support, spending time with patients and families, or performing tasks that support hospice care services. Concord Regional VNA is incredibly fortunate to have nearly 100 volunteers from the communities we serve who give their time and energy to our hospice patients and their loved ones.

So what does this mean and why does it matter? The recently released data suggests that more people have come to understand that receiving care in the comfort of home – in familiar surroundings, in proximity to loved ones and friends – is a preferable and realistic option. From a clinical standpoint, studies show that patients who receive hospice care live longer than those with similar diagnoses who do not receive hospice care. Receiving care at home also has a significant positive impact on overall health care costs.

Death is a fact of life. Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. Choosing hospice is not giving up, rather, it is choosing to live fully until you die.

It is not meant to be scary; it is meant to help people live each moment to the fullest and to pass with dignity and respect surrounded by love.

We at Concord Regional VNA are privileged to help patients and their loved ones navigate this journey, and proud to have been providing hospice service to the people of Concord and the 43 other New Hampshire communities we serve for more than 30 years.

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‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto’s house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

They toasted Phil as Dr McLaren gently swabbed the father-of-two’s arm with medicinal alcohol.

Phil Ferrarotto

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: “This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

“I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there’s not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

“Nothing that we could have done would have avoided his death, but we were able to make sure Phil  died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

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To Die Is Different From What Anyone Supposed

Art, philosophy and mortality.

By Joseph Kugelmass

At an overlooked moment in his Essays, Michel de Montaigne writes that “life itself is neither a good nor an evil; life is where good or evil find a place, depending on how you make it for them.” Yet it’s hard for anyone to reckon, before the point is moot, how much good and evil one life shelters in its span. No matter what we do while we’re alive, there’s plenty that we leave unfinished, or that we gape at while it goes awry. There are mistakes that we still might have enough time to mend. Hamlet got it backwards: it’s not death, but life, that “puzzles the will” with its ironies and uncertainty.

Every now and then, however, people manage to outlive themselves. Convicts serving life sentences do, for example, which is why “Folsom Prison Blues” is such a savage, luminous song. Mortally ill people sometimes end up in an equally uncanny position. Leo Tolstoy’s character Ivan Ilych, on his deathbed, glimpses the ugly truth of his life: “It occurred to him that what had formerly appeared completely impossible to him, that he had not lived his life as he should have, might be true. It occurred to him that those barely noticeable impulses he had felt to fight against what highly placed people considered good, barely noticeable impulses which he had immediately driven away—that they might have been the real thing, and all the rest might have been not right.”

Russian literature is full of people like Ivan. Prince Myshkin (in Fyodor Dostoevsky’s novel The Idiot) eventually realizes that “for a long time now, he had not been talking about what he needed to talk about, and had not been doing what he needed to do.” The horror of this realization breaks his spirit, and he succumbs to seizures and catalepsy, dead to the world. A quieter storm breaks over Lambert Strether’s head in The Ambassadors, by Henry James: “I’m too old…What one loses one loses; make no mistake about that. Still, we have the illusion of freedom; therefore don’t, like me to-day, be without the memory of that illusion.”

Outcries of regret like these carry an emotional charge for us, the audience, that can be hard to explain. Is the finality of death, prison, or old age really profound just because—to quote Michel Houellebecq—the goal of life’s been missed? Critics have spent their whole lives on the works of Henry James only to conclude that “the idea of ‘too late’” was some kind of regrettable obsession on James’s part (see, e.g., Berthold 1983). After all, the curtain does have to fall, sooner or later.

Fortunately, these epiphanies that reach us from death’s farther shore aren’t really bemoaning lost opportunities. Instead, they are bits of fire carried down from those Olympian peaks where life appears as it really is: a frenzied circus of petty motives, bootless efforts, and misunderstandings. Death is the greatest moral agent in all of life. It boils each individual down to her most generous acts; nothing else survives. We are the sum of our gifts to the people who will outlive us. Thus it does matter what a dying man decides to regret. His regrets, useless to him, are the bitter correctives that we survivors may choose to adopt.

Literature’s stuffy cousin, philosophy, is always playing a game of death. The philosopher tries to abstract truths about life from human experiences, impartially, as if she hadn’t lived them herself. Baruch Spinoza famously wrote that philosophy should consider the world sub specie aeternatis, “from the perspective of eternity.” Erasmus, in The Praise of Folly, paints a vivid picture of Menippus (who, supposedly, lived on the moon) doing just that: 

“If a man like Menippus could look down from the moon and behold those innumerable rufflings of mankind, he would think he saw a swarm of flies and gnats quarreling among themselves, fighting, laying traps for one another, snatching, playing, wantoning, growing up, falling, and dying. Nor is it to be believed what stir, what broils, this little creature raises, and yet in how short a time it comes to nothing itself; while sometimes war, other times pestilence, sweeps off many thousands of them together.”

It’s a comical picture, but there’s a great deal of forgiveness in it as well. When it’s our turn to die, there’s no longer any reason to stay angry at people who loved us, or cheated us, or whom we envied. Recrimination and bitterness lose their impetus. The facts of life don’t alter just because we die; if we lived forever, we’d still behave like idiots from time to time. But the fact of death, seen clearly and steadily, drags many other things with it into the light. At the moment of his death, when he’s murdered, Lester Burnham (in American Beauty) “can’t feel anything but gratitude for every moment of my stupid little life.”

Philosophy as we know it began when Plato sat down and tried to make sense of the murder of Socrates; the vicious Athenians who killed him to preserve their monopoly on morals become, in The Republic, simple cave-dwellers frightened of sunlight. Their cruelty is pardonable blindness; in order to write about the death of Socrates, in a fashion that honored his greatness, Plato had to make peace with his teacher’s executioners.

We tend to think of “objectivity” as a cold, rational perspective that doesn’t take sides on questions of morality. We associate it with empirical observation and scientific testing. That’s a tremendous misunderstanding. To be objective is to grasp something as a whole. It lays bare the threads that connect a senseless murder in Reno with a “fancy dining car” on a passing Folsom train. It’s realizing, as Plato did, that Socrates couldn’t have become so widely known and admired in a city less dangerous to him than Athens. It means remembering, like Ivan Ilych, the impulses towards something better that one felt, repressed, ignored, all for the sake of a life not worth living in the first place.

Walt Whitman wrote, in his “Song of Myself,” “to die is different from what anyone supposed, and luckier.” For, as he says in the preceding line, “All goes onward and outward, nothing collapses.” To see that, instead of just divining and proclaiming it, is the work of philosophers: those few who teach themselves to die with eyes open.

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