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End of Life Care for People with Developmental Disabilities

Why talking about this taboo subject with your loved one early on is important

Charlotte Woodward and her mom, Darcy Woodward

By Beth Baker

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so. 

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

A person smiling at home. Next Avenue, developmental disabilities, end of life care
Charlotte Woodward

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

Complete Article ↪HERE↩!

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Rob Delaney’s book, about the loss of his son, sings with life

In ‘A Heart That Works,’ the ‘Catastrophe’ star ruminates on the death of his toddler from a brain tumor

by Nora McInerny

At the very top of the list of things that people say are “unimaginable” is the tragedy of one’s child dying. People don’t mean they can’t imagine it, of course, but that they will not; it would be too sad, too much. Not 10 pages into Rob Delaney’s “A Heart That Works,” a memoir of his son Henry’s life and death from brain cancer at age 2½, he insists that you do imagine it.

“If you have more than one child, it’s critical you pick one for this exercise,” he writes. “If you’re reading this, and you have a child, do it now.”

I did exactly that, because I’m a good listener, and because Delaney’s urge to have the world around him gain fluency in his pain is familiar to any griever. How can we express what it means to lose the ones we love, what their lives meant to the people in their orbit? How can we get people not just to acknowledge our pain with platitudes and sympathy cards and flower arrangements, but to feel it?

When everything happens for a reason, even the bitterest pill can be swallowed. But what meaning can possibly be assigned to a cancerous tumor growing in your baby’s brain? To watching him suffer through treatments that can only delay the inevitable? To having a permanent hole torn in the fabric of your family when there is nothing more to be done, and your toddler dies on his father’s 41st birthday?

For Delaney — blessedly — there is none. There is no silver lining to his infant son being diagnosed with a brain tumor and undergoing two years of brutal treatment, no bright side to his other sons growing up without their brother, to holding, with his wife, their son’s lifeless body. If that sounds like a bummer, well, it is — the guy’s kid died! — but to those who have felt the icy grip of grief around their own throats, it is a relief to read an account of grief that is not a series of hard-won life lessons wrapped in a gratitude journal.

There is no making sense of the senseless, and Delaney doesn’t attempt to. Instead, the comedian — best-known to my children as the dad from last year’s “Home Alone” reboot, and to most adults as the creator and co-star of “Catastrophe” — ditches a linear narrative and drags us into the chaos of real grief.

The book starts after Henry’s death and skips around in scenes that explore life before Henry’s illness, during his treatment and after his death. The result is a book that sings with life: not just Henry’s abbreviated one but the lives of the people who loved him, who love him, who will continue to love him until, as Delaney writes, they “walk through a door he had walked through.”

It’s unfair to expect grievers to emerge from the depths of loss having mined diamonds of meaning, alchemizing their suffering into a form of self-improvement. Grief, Delaney notes, doesn’t sanctify you, but in his case it appears to sharpen his vision: He spills out his shame over the workaholism that made him “a bad husband and a very, very good cog in the TV machine.”

He admits to skipping his father’s birthday celebration because, you know, doesn’t it seem a little gauche to celebrate having 70 years on this planet when your grandson had only two? These are the kinds of thoughts a person in the throes of grief often has and rarely gets to say out loud, let alone commit to the page.

After wiping tears from my face over the reaction one of Henry’s caregivers had to the news that the boy would soon die, I howled in delight at Delaney’s response to an acquaintance who wanted the Delaneys to know that his grandfather had survived the kind of brain tumor that killed Henry:

“Are you … kidding me? I wouldn’t care if your ninety-year-old grandfather got hit by three buses and then fell into a meat grinder! Grandfathers are supposed to get tumors and die! That’s their job!”

That my laughter annoyed the child whose death I had dutifully imagined earlier in the day was a bonus; I’d thought similar things when his father died of a brain tumor in 2014. That a book about a dead child is at times laugh-out-loud funny is a testament to Delaney’s skill; in the hands of a lesser writer, the humor could seem dismissive or grasping instead of the natural release valve of a person who is highly attuned to the absurdity of the awful.

Mary Oliver assured us that we do not have to be good, but Delaney shows us what that means: In the midst of your disorienting pain you can rage against the absurd and inhuman bureaucracy of modern health care; find comfort in passive suicidal ideation during scuba training (“I won’t take the regulator out of my mouth and inhale a lungful of water on purpose, but if it got knocked out by another flailing student and my own fin got caught on a drain, and I panicked and inhaled, and they couldn’t revive me — well, then that would be okay”); find comfort in your partner’s body while your child is undergoing brain surgery across the street; hate that your child is suffering and still find great beauty in the tasks associated with his care.

Grief is far more than crying, and a person is far more than their death. To share any part of Henry with the world was an act of great generosity. The depth of my own medical knowledge comes from the University of Google, but I can assure Rob Delaney that his is a heart that works.

Complete Article ↪HERE↩!

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Coffin? Casket? Cremation?

— How to make your death more environmentally friendly

By and

We can all agree humans need to reduce their impact on the environment. And while most of us think of this in terms of daily activities – such as eating less meat, or being water-wise – this responsibility actually extends beyond life and into death.

The global population is closing on eight billion, and the amount of land available for human burial is running out, especially in small and densely populated countries.

To minimise environmental impact, human bodies should return to nature as quickly as possible. But the rate of decay in some of the most common traditional disposal methods is very slow. It can take several decades for a body to decompose.

In a one-of-its-kind study, our team analysed 408 human bodies exhumed from grave pits and stone tombs in the north of Italy to find out what conditions help speed up decay.

We conducted research on bodies exhumed from the La Villetta cemetery in Parma, Italy.

The environmental cost of traditional burials

Funeral rituals should respect the dead, bring closure to families and promote the reaching of the afterlife in accordance with people’s beliefs. This looks different for different people. Although the Catholic church has allowed cremation since 1963, it still prefers burials. Muslims are always supposed to be buried, while most Hindus are cremated.

In Australia, however, the latest census revealed almost 40% of the population identifies as “not religious”. This opens up more avenues for how people’s bodies may be handled after death.

Most traditional burial practices in industrialised countries have several long-lasting harmful effects on the environment. Wood and metal fragments in coffins and caskets remain in the ground, leaching harmful chemicals through paint, preservatives and alloys. Chemicals used for embalming also remain in the ground and can contaminate soil and waterways.

Caskets made out of processed materials like metal and wood are bad for the environment.

Cremation also has a large carbon footprint. It requires lots of trees for fuel and produces millions of tons of carbon dioxide each year, as well as toxic volatile compounds.

There are several alternatives to traditional burials. These include “water cremation” or “resomation” (where the body is rapidly dissolved), human composting, mummification, cryonics (freezing and storage), space burials, and even turning the body into trees or the ashes into diamonds or record vinyls.

However, many of these alternatives are either illegal, unavailable, costly or not aligned with people’s beliefs. The vast majority choose coffin burials, and all countries accept this method. So the question of sustainable burials comes down to choosing between the many types of coffins available.

What leads to faster decomposition?

Coffins range from traditional wooden caskets, to cardboard coffins, to natural coffins made from willow, banana leaf or bamboo, which decompose faster.

The most environmentally sustainable choice is one that allows the body to decompose and reduce to a skeleton (or “skeletonise”) quickly – possibly in just a few years.

Our research has presented three key findings on conditions that promote the skeletonisation of human bodies.

First, it has confirmed that bodies disposed in traditionally sealed tombs (where a coffin is placed inside a stone space) can take more than 40 years to skeletonise.

In these sealed tombs, bacteria rapidly consume the oxygen in the stone space where the coffin is placed. This creates a micro-environment that promotes an almost indefinite preservation of the body.

We also found burial grounds with a high percentage of sand and gravel in the soil promote the decomposition and skeletonisation of bodies in less than ten years – even if they are in a coffin.

That’s because this soil composition allows more circulation of air and microfauna, and ample water drainage – all of which are helpful for degrading organic matter.

Finally, our research confirmed previous suspicions about the slow decomposition of entombed bodies. We discovered placing bodies inside stone tombs, or covering them with a stone slab on the ground, helps with the formation of corpse wax (or “adipocere”).

This substance is the final result of several chemical reactions through which the body’s adipose (fat) tissues turn to a “soapy” substance that’s very resistant to further degradation. Having corpse wax slows down (if not completely arrests) the decomposition process.

A new, greener option

In looking for innovative burial solutions, we had the opportunity to experiment with a new type of body disposal in a tomb called an “aerated tomb”.

Over the past 20 years aerated tombs have been developed in some European countries including France, Spain and Italy (where they have been commercialised). They allow plenty of ventilation, which in turn enables a more hygienic and faster decomposition of bodies compared to traditional tombs.

They have a few notable features:

  • an activated carbon filter purifies gases
  • fluids are absorbed by two distinct biodegrading biological powders, one placed at the bottom of the coffin and the other in a collecting tray beneath it
  • once the body has decomposed, the skeletal remains can be moved to an ossuary (a site where skeletal remains are stored), while the tomb can be dismantled and most of its components potentially recycled.
An ossuary is full of skeletal remains forming a pillar and lining the walls – with a large white cross in the centre of a back wall.
Arguably one of the world’s most famous ossuaries, the Paris Catacombs is an underground labyrinth containing the remains of more than six million people.

Aerated tombs are also cheaper than ordinary tombs and can be built from existing tombs. They would be simple to use in Australia and would comply with public health and hygiene standards.

Most of us don’t spend much time thinking about what will happen to our bodies after we die. Perhaps we should. In the end this may be one of our most important last decisions – the implications of which extend to our precious planet.

Complete Article ↪HERE↩!

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Exploring the ordinary and extraordinary in end-of-life care, death

Dr Samuel Labaron PhD, M.D. at Stanford Hospital and Clinics on Thursday, November 12, 2009.

by

Samuel LeBaron, MD, PhD, is a family medicine specialist and Stanford Medicine professor emeritus who now faces the situation he guided patients through during his career: navigating terminal lung cancer. In his memoir, Ordinary Deaths, published in July, LeBaron weaves personal stories with vignettes that illuminate the patients whose lives he’s witnessed.

Throughout his career as a family medicine doctor, hospice care provider and technician in a medical examiner’s office, LeBaron jotted down stories of his patients, intent to one day share them with his inquisitive children who asked what he did every day. He chose his words carefully, creating a repository of clinical experience, much of it from a time before hospice existed.

I asked LeBaron to share more about his career and the stories he’s said were a salve in coming to terms with his own mortality.

You’ve talked about how you saw death as a child. What does that mean?

Up until about 5 years old, children have not yet adopted the notion of cause and effect. By the time we’re in the third or fourth grade, we’ve learned we live in a world of rules. So we think the way we live our lives determines how our lives end. One might think that a happy person would feel a bigger loss when they’re facing death. That seems logical. But I’ve personally experienced the opposite. I think of it as a phrase: “I could die happy now.” If we have time to accept our death as the end of a happy life, we’re much more ready to accept it.

The title describes death as “ordinary.” How can death bring meaning to our everyday lives?

The book title was partly ironic because every death I witnessed was extraordinary. On the other hand, they are ordinary deaths in the sense that this happens to everyone in some form or another. Put another way, there is really nothing extraordinary about waves. They just wash up and down the shore, but we love them all the same. And they may help create an extraordinary experience. We may go to the ocean to shed our tears and feel a little bit of comfort from that gentle, constant roll in and out. Our deaths are similar in that way: ordinary and extraordinary at the same time.

What guidance can you share with doctors offering end-of-life care? What have you done for patients in their last hours that you think made the biggest difference to them?

What loosens the tongue faster than anything is a safe, sympathetic environment. There are two basic prompts you need to know: Tell me about yourself and tell me more. Ask questions. Invite the exploration of the question and give a response to let them know they’ve been heard: “I can imagine that was very difficult. I really appreciate you letting me into that story.”

It helps the patient feel heard and valued.

The great tragedy is that for the most part, American physicians — the sweetest, most jolly, most interesting people you could want to meet — are on a treadmill, often seeing too many patients to have time for deeper connection.

What value does writing bring to your life, especially as you face your own illness?

Writing is incredibly meaningful in my life. When I was 14, I found it difficult to communicate the way I wanted. I went from a gregarious, playful kid to a reticent teenager.

I also became distant with my brother. But then something quite remarkable happened: We began to write little stories and sometimes letters to each other. They were all about adventure; some of them were entirely fiction, all of them outrageous, and they entertained us and made us laugh. There were times when we would stay up all night, doing nothing but writing stories. It was so much fun, and it drove my parents crazy.

And then, in my 40s, it occurred to me that all the knowledge gleaned from my patients could disappear if I didn’t write any of it down. Since then, it’s been a process of reintegration after feeling like a bomb went off in my house when I learned of my diagnosis.

My wish is that these stories and lessons be used as a guide — to show people how to be present and supportive, how to let people know you hear them and help them get what they need.

Complete Article ↪HERE↩!

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Research offers new perspective on grieving loss of a pet

A new review published in the CABI journal Human-Animal Interactions offers counsellors additional perspectives to explore while working with clients who have lost their pets.

The research highlights how during the COVID-19 pandemic, there was more opportunity for people to spend longer with their pets – relying on them to help maintain a sense of normality and provide security during periods of isolation.

Dr Michelle Crossley, Assistant Professor at Rhode Island College, and Colleen Rolland, President and pet loss grief specialist for Association for Pet Loss and Bereavement (APLB), suggest that pets play a significant role in the lives of their caregivers.

However, they add that grieving the loss of a pet continues to be disenfranchised in society.

Dr Crossley said, “Perceptions of judgment can lead individuals to grieve the loss without social support.

“The present review builds on research in the field of pet loss and human bereavement and factors in the impact of the COVID-19 pandemic on human-animal attachment.

“A goal of the present review is to provide counsellors with perspectives to consider in their practice when working with clients who have attachments to their companion animals.

“It also aims to acknowledge the therapeutic benefits of working through the grief process to resolution as a way to continue the bond with a deceased pet.”

The researchers say that stigma associated with grieving a loss can complicate the healing process and that counselors would expect to see more clients wanting to discuss their grieving – particularly during the COVID-19 pandemic.

They add that while empathy may come more naturally when discussing human loss, there are other types of loss that are not acknowledged or given a similar amount of attention by society.

This includes death by suicide, a lost pregnancy/miscarriage, death from AIDS and the death of a pet.

Ms Rolland said, “When relationships are not valued by society, individuals are more likely to experience disenfranchised grief after a loss that cannot be resolved and may become complicated grief.

“The major goals of this review are to provide counsellors with an aspect to consider in their therapeutic work with clients dealing with grief and loss and present different factors that may impact how one grieves the loss of a pet.

“It also discusses considerations for counseling that can be utilized to foster a supportive and non-judgmental space where clients’ expressions of grief are validated.”

Dr Crossley and Ms Rolland, in their review, suggest that having a safe space to discuss the meanings associated with the companion animal relationship is beneficial for moving through the loss in a supportive environment, leading to the resolution of the pain of the loss.

Dr Crossley added, “When an individual loses a pet, it can be a traumatic experience, especially given the strength of attachment, the role the pet played in the life of the individual, as well as the circumstances and type of loss.

“Giving a voice to individuals grieving a disenfranchised loss is one way in which counsellors can help clients through pet loss.

“It is also important to integrate pet loss work into counseling interventions and coping strategies that are already being used in the therapeutic space.”

The researchers believe that group counselling sessions in person or web-based chatrooms can both work as healing spaces for those working through grief.

Counselors can also engage both children and adults who are navigating pet loss by providing them with supplies and space to paint, draw, or use figures to draw out their anxieties and fears about the loss, they state.

In conclusion, Dr Crossley and Ms Rolland argue that understanding the grief process of pet owners can better prepare professionals to foster non-judgmental spaces where clients can feel open to display their grief.

Furthermore, providing empathy and validating the feelings that any type of loss of a pet can create for the clients may lead to more open sharing among the community further enhancing the healing process and a possible societal shift in the recognition of grieving pet loss as a normative experience.

Complete Article ↪HERE↩!

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What to Expect from Sex after Pregnancy Loss

By

Sex after pregnancy loss is not just sex. It’s complicated sex.

For starters, there’s the whole grieving thing. Can you – should you – experience pleasure in the middle of grieving a loss? If you had infertility before or after your loss, sex might become a matter of getting down to business. You might be feeling conflicted about your body because of your loss. Maybe you’re trying to come to terms with your postpartum self. Plus – hormones. A lot of them. Oh, and did I forget to mention that you and your partner might be on completely different wavelengths on when, how often, and whether to try for a baby or to prevent?

Like I said. Complicated.

Before we break down why sex after pregnancy loss is complicated – and the phases your sex life might go through – let’s get down to basics.

When it’s safe to have sex after pregnancy loss

You may be wondering when you should start having sex again. The answer to that is largely personal based on all the circumstances of your loss. However, the first step is always to make sure you’re cleared by your provider to resume sex. If you had an uncomplicated, early miscarriage, your provider may OK you to start the next cycle. You need to avoid having sex while your cervix is open to reduce your chances of infection. You should not insert anything into your vagina for two weeks following your miscarriage.

If you had a complicated or later loss, your doctor will likely recommend you wait longer. For stillbirth or live birth ending in a loss, you may need to wait a full six weeks. A general rule of thumb: Wait until your bleeding has stopped. Again, factors such as if you had surgery, how far along you were, and if you experienced complications can affect how long your provider will tell you to wait[1]“All About Sex and Intimacy After a Miscarriage or D and C,” Ashley Marcin, Reviewed by Valinda Riggins Nwadike, MD, MPH, Healthline Parenthood, February 29, 2020..

When sex feels safe again.

Sex is vulnerable. And when you are already in a tender state of grief, sex can be triggering. You might be reminded of when you got pregnant with your baby who died. You could be unsettled wanting to get pregnant, but then terrified of getting pregnant. Your relationship might be a little more fragile than it once was. There are many reasons why it can be hard for both you and your partner to be in the mood.

The phases of sex after pregnancy loss

Sex is as individual as the couple. But when it comes down to doing the dance, there are a few stages loss couples often go through when it comes to physical intimacy.

You might hit all of these in rapid-fire succession – or you may skip quite a few. But you’ll probably experience at least some of the following stages:

Don’t even think about it.

You might know you’re in this stage when you make sure your partner never sees you naked, just so they don’t get any ideas. You may feel panic when they start to touch you or instantly shut down. You may not come to bed until they are fast asleep. Or you may just frankly tell them, “Don’t even think about it.” You could feel anything from simple disinterest to complete repulsion. Whatever the cause, whatever the effect, sex is the last thing you’re in the mood for.

Have sex – then cry.

Maybe it’s been a day, a month or a year, but you finally feel ready. Sex feels not only okay, it feels good. You feel close with your partner, and for at least a little while think this was a good idea. And then it happens … you’re triggered. Maybe you’re remembering having sex to get pregnant or having sex while pregnant. Or maybe it’s nothing that cerebral at all. You just know that one minute you were having sex. And the next, you’re crying.

I want to. But physically, I can’t. Or it hurts.

Emotionally you might be ready to hit the sack with your partner again, but physically your body is saying no. Perhaps you haven’t yet gotten the clearance from your doctor. Or you have a wound, such as a tear or incision that is causing extra pain. Whatever the case – if you are emotionally ready for sex, but it’s not safe physically, explore some alternatives to help you achieve the intimacy you want with your partner.

Don’t get pregnant, don’t get pregnant, don’t get pregnant.

Two of your most basic instincts – procreation and survival – go head-to-head in sex after pregnancy loss. On the one hand, you might associate sex with your desire and ability (or inability) to have a baby. And on the other, you may feel like there is absolutely no way you’d survive another loss. The resolution: Strict lockdown on all things baby-making. Condoms? Check. Birth control? Check. Ovulation predictor kits used to prevent sex during ovulation? Check. You want to have your baby. But because you can’t, right now, you just need to focus on surviving.

I feel so numb, I just need something to make me feel anything at all.

When people talk about grief, they almost always associate it with sadness. But you know that sadness is sometimes preferable to not feeling at all. Sex provides a bit of an escape from the numbing. For a short time, you can feel something, anything.

I have a super complicated relationship with my body right now. 

Chances are, you want to feel sexy and confident in your skin. But a loss of a child in pregnancy or after can seriously mess with your relationship with your body. You might feel angry at it for “failing” you. You might feel like it doesn’t deserve to feel joy or pleasure when your baby is gone. Or maybe you are just dealing with your body looking and feeling completely different. You may have scars that remind you of your loss that you’d rather not expose. Sex might expose areas you are already feeling particularly vulnerable.

Ready to try again for a baby.

And by ready, we really mean not ready at all – but you figure it’s time to start. If you didn’t deal with infertility before, this stage might look a lot like casual sex. Just without any protection. What is not the same, however, is the obsessive thinking afterward about whether “this was it.” And before, you likely weren’t quite this compulsive over the next two weeks checking for pregnancy signs.
Check ovulation. Text husband: “Sex, now.” Transaction occurs. Legs in the air. Then do it all over 48 hours later.

If you don’t have time for casual baby-making, or you have dealt with infertility before, your version of sex after loss might look a lot more regimented. And frankly, not as fun. Because conceiving again usually means having sex regardless of your current mood. On the one hand, this focus on sex and timing gives you something to focus on besides your loss. It makes you feel like you have some measure of control. On the other hand, it often feels like a transaction, one your mind and heart can be absent for, as your body only is required. While regular sex can be good for your partnership, scheduled sex like this can be draining for you both.

I want sex because I need to be close to my partner.

You and your partner are both grieving, and one thing you need right now is to feel a close connection. You need to know that somehow, you’ll get through this together. Both men and women can find comfort in an act of intimacy during grief. Sometimes, it’s the one way you can communicate your love for each other when words fail.

Sex after pregnancy loss is complicated.

As you work to figure sex after loss out, give you and your partner lots of grace. You have the right to wait however long you need to or want to. Have clear communication with your partner on your expectations and show your partner the same respect. It can take a long time to physically, mentally, or emotionally be ready to have sex after pregnancy loss. Give it time.

While it is complicated, sex after pregnancy loss is worth having.

Complete Article ↪HERE↩!

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In New Doc ‘Last Flight Home’, a Film-Maker’s Dad Gets His Final Call

— Ondi Timoner’s sweet, sad film about her father shows what a good death can look like

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You have to be in a certain mood to watch Ondi Timoner’s new documentary, Last Flight Home, which plots out the final 15 days of her 92-year-old father’s life. Hmm, do you want to zone out to a Parks and Rec marathon tonight, or watch a family come to terms with their patriarch’s decision to instigate an assisted death and end his overwhelming physical exhaustion and pain? It might be a hard sell, but for those who can bear to think a little deeper about the nature of existence – and the end of existence – the rewards are rich.

As the film opens, we join the Timoners in the aftermath of what we can only imagine to have been a long and difficult conversation: whether or not to support Eli – who was paralysed in 1982 and is now suffering from congenital heart disease and having difficulty breathing – in his decision to take advantage of the California End of Life Option Act. (There’s no debate about how Eli feels, as he somewhat starkly puts it: “I just want to be in the ground.”)

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By the time we meet them, Eli’s wife, Lisa, and their three grown-up children, Rachel, David and Ondi – who made her name as a film-maker with the very different but also surprisingly intimate documentary Dig!, about the divergent paths of two 1990s indie bands, the Dandy Warhols and the Brian Jonestown Massacre – have come round to his way of thinking, and are going to give their father the best send-off they can. All Eli has to do is tell the doctor his decision, and a 15-day countdown – which serves as chapter markers for the film – to his legally self-administered fatal dosage begins.

What happens next is quite extraordinary, and raises so much that is valid and instructive about how we live and how we die that it’s hard to know where to begin. In a series of Zoom calls and reunions at the bedside of the couple’s home in Pasadena, California, Eli says goodbye to the people who have meant something to him in his life. His colleagues, his friends, his care-givers, his extended family. He tells them he loves them, they tell him they love him right back. He fine-tunes his obituary, and makes quips about his bunk-bed style burial plot, in which he’ll await his wife’s arrival: “That’s heaven. I love Lisa on top.” What a thing, to look death in the eye and still make terrible dad jokes. Eli must be some guy.

And it turns out he is, or was. Now we get Eli’s back story, the part that Ondi is so keen to relay (something that Robert Downey Jr is also doing for his dad in his forthcoming Netflix documentary, Sr). Having set up an airline, Air Florida, in 1972, Eli became a hugely successful businessman and personality (that picture of a young King Charles looking bashful in a polo shirt? Zoom out and it’s Eli and Lisa flanking him on either side) only to overstretch himself and lose it all. We also find out more about the circumstances of his paralysis (it happened, somewhat shockingly, because of a massage), which caused a huge shift in the dynamics of the family as Lisa and the children rallied around to support him as he had once them.

film maker ondi timoner with her father eli in the days before his death
Film-maker Ondi Timoner with her father, Eli, in the days before his death

What makes the film so bittersweet, is that while Eli’s family is saying goodbye, we as viewers are just getting to know him: getting familiar with the nuances of his relationships with his children, who are inspirationally – and to frigid English sensibilities, a little freakishly – demonstrative of their affection for him; getting a sense of his steady morals and kind heart (OK it’s not the most objective biography, but you’re prepared to let it slide); getting the odd exasperated aside from Lisa, a Bronx native, who raises her eyebrows to the camera as Eli, with just days to live, listens to a droning automated voice read out a list of his bank transactions.

And although the film makes no attempt to discuss the rights or wrongs of assisted suicide – it’s just not what’s being explored here, and that’s fine – you can’t help thinking, as the days tick closer, that Eli’s done something right. He’s got to see his children honouring him in the ways they are best able – David’s written his obituary; Rachel, a rabbi, is preparing his funeral; and Ondi is making this film – and, courtesy of some poison in a plastic glass with a drinking straw, he’s going to be able to show himself to the door. It’s hard, it’s sad, but you can’t help feeling that there are lessons to be taken from the Timoner family’s experience, and that, ultimately, a good death was had by all.

Complete Article ↪HERE↩!