Anticipatory grief: How to cope if you’re struggling to watch a loved one age

— Here, experts break down anticipatory grief, an under-talked-about and all-too-common experience of watching loved ones get older.

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It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize—  and process — when they’re experiencing it.

“Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” (Think: Cognitive decline.)

Whether you’re experiencing it now or want to be prepared, here’s what experts want you to know about anticipatory grief. 

What is anticipatory grief?

A viral tweet about anticipatory grief sparked a recent conversation, but the concept isn’t new — or rare. “Anticipatory grief is a very common experience for caregivers and/or adult children,” says Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It references watching the physical, cognitive, behavioral and emotional changes you witness in a loved one. In a sense, you lose them twice. Once you have seen these changes over time, and the second time is at the moment of death.”

What triggers it?

While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.

“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”

This moment or phase then can then take you to a place where you begin to imagine life without them, Waichler notes. “It sometimes becomes an unconscious way to prepare for their death.”

What does it look like?

“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. While each person will experience it differently, many will have some, or all, of the following feelings, according to Ardito and Waichler:

  • Depression.
  • Anxiety.
  • Anger.
  • Sadness.
  • Disbelief.
  • Denial.
  • Dread.
  • Fear.
  • Shock.
  • Guilt.
  • Helplessness.
  • Hopelessness.
  • Numbness.
  • Dissociation.
  • Confusion. 

“There also may be other emotions involved, such as gratitude or acceptance,” notes Ardito.

“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”
— ALICEA ARDITO, A LICENSED CLINICAL SOCIAL WORKER

For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”

For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”

Contending and actively dealing with anticipatory grief is a personal process, but here are a few ways to approach these unique and often confusing feelings, according to Ardito and Waichler:

Talk it out.

According to Waichler, regardless of whom you speak to, talking about your feelings regarding the impending loss is key. “If appropriate, and the person who is dying shares a willingness to discuss their feelings about their impending death, it can create an intimacy and environment to help both parties begin to cope,” she says, adding: “Many people feel regret for not saying all they wanted to a loved one that is dying.”

If a conversation with the aging or ill person isn’t on the table, Waichler recommends finding “another outlet to discuss tumultuous feelings.” She offers the suggestions of talking to a “therapist, trusted friend or family member, an online or in-person support group or a spiritual or faith-based leader.”

The main take-away: Don’t self-isolate and be alone. Says Waichler: “People tend to do this when depressed and it only makes healing more challenging.”

Get inquisitive.

Ardito notes that when a realization occurs that there may not be much time left, it’s a good time to inquire about their life (even if you already know). “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she says.

This also was a recommendation when the topic of anticipatory grief recently came up on Twitter:

Get intentional with your time.

It sounds cliché, but it’s true: Quality is more important than quantity. “It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”

In order to make the most of your time with a loved one, no matter how much is left, consider formulating a loose plan or general ideas. “Spend time thinking about how you want to spend your remaining time together,” Waichler suggests. “What can you do to help make this time more meaningful and bring quality and purpose to both of your lives?”

“Think along the lines of creating beautiful moments and memories together,” Waichler continues. “It may be a walk in a beautiful park, spending time in a garden, looking at photos of beloved family and friends and reminiscing or sharing favorite movies or music together.” 

Set boundaries, if need be.

“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.

“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”

“Some people experience anger or irritability towards the person who is dying. It is important to recognize and identify the source of these feelings.”
— IRIS WAICHLER, A LICENSED CLINICAL SOCIAL WORKER

Accept your feelings — no matter what.

One of the most important things you can do during such a fraught time is to “acknowledge and accept your feelings, whatever they are, without self-criticism or judgment,” according to Waichler, who notes that “journaling can be a good outlet to process your feelings.”

“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.”

Take care of yourself.

While your aging parent or loved one may be your number one priority, it’s important to “engage in self-care activities during this time,” says Waichler.

“Make time for yourself to get enough sleep, eat healthy meals and exercise,” she says. “Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm. The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”

Complete Article HERE!

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!

What to Expect from Sex after Pregnancy Loss

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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!

Death is a part of life that kids need to understand, no matter how hard it is

Why is it taboo to talk about dying? And how can we talk to our kids about it?

Grief can be hard for kids, let alone adults, to process. But talking about death can make it easier to understand.

by Amy Bell

Death is a fact of life. But it’s one that many people would love to avoid talking about at all costs.

Maybe it’s superstition: somehow, if we don’t speak of it, it won’t affect us. But death is inescapable.

So how do we prepare our kids to confront loss?

‘We are a death-denying society’

Christa Ovenell is working hard to change the dialogue and attitudes around death.

She’s an end-of-life educator and created the Vancouver-based organization Death’s Apprentice as a way to help people and families openly prepare for death and accept it as a natural progression of life. But it’s a hard switch to flip in a society that holds youth and vitality in such high regard.

“Think about, for example, in Mexico, where we would have a weeklong celebration for the Day of the Dead, that we would actually go and make our dead a part of our life,” says Ovenell.

“We don’t do that here. Because we are a death-denying society. And that’s what makes it so hard.”

Use straightforward language

The death of a loved one can be incredibly difficult, but for kids it can be especially confusing.

You could throw on an endless loop of Disney movies where someone’s mother always seems to be dying, or you could simply talk about death — and how it’s a completely natural part of life — before big emotions become attached to it.

Ovenell wants death to be normalized and openly discussed from an early age, just as we’ve become more open to talking about sexual health and addiction, for example.

A good start is using straightforward language, “the way we do in other tough or difficult conversations,” she says.

“Real words like, ‘someone died,’ or, ‘the cat died.’ Just normalizing it, making it just part of what kids hear, instead of funny things like, ‘Grandpa is resting,’ or, ‘so-and-so has passed.'”

Openness toward death needs to extend to all ways in which life can end. There are no “good” or “noble” ways people die. Whether from suicide or an overdose, everyone’s life has meaning and should be mourned when it ends.

Memories last

Once someone a child knows dies, it can be difficult for a parent to help them process their feelings while grieving themselves. Grief is not a linear process and it raises many emotions.

Local mom Megan Cindric says the recent and sudden loss of her father has deeply affected her and her twin daughters, Fiona and Lily. Cindric wants to make sure her daughters know however they choose to remember their grandfather is valid, and that she’s just as affected by the loss.

“I am still sad every single day, and so I think it’s completely normal that Fiona is sad every day,” says Cindric.

“When she does get sad I tell her that I understand because I’m sad every day, too. And this is very normal because we loved Grandpa and we still love Grandpa.”

Cindric found both her girls understood their grandfather’s passing once she explained that he was more than just his body, and that would never change.

“I told them … when his body just couldn’t live any more, I could tell that he was different. I could tell that all of the things that made him Grandpa — his energy and his love and his spirit — I could tell that it was gone.

“I could tell that his body had stopped but all of his ‘Grandpa-ness’ had gone somewhere else,” she says.

Religion can bring many people comfort when it comes to confronting the afterlife, but some find solace elsewhere.

Cindric says she was recently in the garden her father had lovingly tended for years when a little green frog came and sat on the colander she was holding. When she told her girls about it, Cindric says they all agreed on one thing: “Fiona said, ‘I think that was Grandpa,’ and I said, ‘I kind of thought it was him, too.'”

There are two things in life we all experience without fail: being born and dying. While one event is celebrated, the other we spend our lives trying to outrun.

But like many topics that have made us uncomfortable in the past, if we push through that discomfort and openly discuss them with our kids, we take their fearful power away.

No matter who we’ve lost, their lives have affected us for the better — and death can’t ever lessen that.

Complete Article HERE!

This is how Claire is preparing her family (and herself) for her death

Claire Romeijn was 29 when her doctor gave her life-altering news.

Claire says she didn’t want to overload her daughters with ‘disastrous news’ when she found out she was terminally ill.

By Tahnee Jash

She had been experiencing severe abdominal pain three weeks after having a baby, but it wasn’t until her daughter was eight months old that she decided to find out what was wrong.

“When I finally had a colonoscopy and endoscopy, they couldn’t get the cameras through because the tumour was so large,” Claire says.

“It was a big shock to everybody.”

Following a diagnosis of bowel cancer, she underwent surgery and chemotherapy and for a period was cancer free — until she was back to see the doctor again.

“I got the second diagnosis that it was back, and I was now stage four,” Claire, who is now 33, says.

Without a cure and the cancer spreading to other organs in her body, Claire is now going through her last chemotherapy treatment available.

She spoke to ABC podcast Ladies, We Need to Talk about how she’s coping.

Talking about death with your children

As Claire was still processing the news, she knew she had to figure out how to tell her five daughters — in particular her eldest, who was 10.

She says she didn’t want to overload anyone with “disastrous devastating news” around being terminally ill.

So, the Sunday after receiving her diagnosis, Claire made fresh pancakes and told her children gently over breakfast that she was starting chemotherapy again.

“I said, ‘Mummy’s going to have to do chemo again’.

“My oldest was at the end of the table and she was very, very quiet, just processing it. [Then] she says, ‘Does that mean your cancer’s back?’ And I said, ‘Yes’.”

Claire says it’s been especially hard for her children and partner to process her diagnosis.

“[My eight-year-old] was crying [one] night and I said, ‘What’s wrong? And she said, ‘I don’t want a new mummy’,” Claire says.

“I said, ‘I will always be your mummy, that’s never going to change’.”

Clinical psychologist and director of the Death Literacy Institute, Kerrie Noonan, has spent her career helping people feel more comfortable talking about death.

She says it can be hard to explain it to children, especially when they’re young, but her advice is to talk openly.

“For young children, grasping death as a permanent thing is an important part of their grief,” Dr Noonan says.

Religion or spirituality can be a source of comfort when it comes to grief but helping children grasp the physical process is just as important.

“Often our inclination is to say to kids, ‘When I die, I’m going to heaven’,” Dr Noonan says.

“It’s not concrete enough for a young child to kind of understand.”

“So, [instead you might say], ‘When I die, my body stops working, I won’t have any pain anymore and my body will be buried’,” she says.

Claire’s still trying to work out the best way — and time — to tell her kids she’s terminally ill and says it’s been an overwhelming experience preparing her family for her death.

One thing that is helping her is creating special keepsakes for her daughters to cherish.

“My big girls will remember, I know they will but the five, three and one-year-old is a different story of what memories they’ll hold on to,” she says.

“I want to write a letter to them all individually, about how much I love them [and] funny little things their dad might not remember.

“I want to write a list of ‘Mummy’s advice’, for when they are older, but I’ll definitely be putting the aunties on the ‘period talk’ because I don’t trust their father,” she says, laughing.

Talking about death with your partner

Claire also worries about her husband and how he’s coping with all the changes.

“He’s not someone to dwell on the negative, so it’s really hard to get him to open up,” she says.

“We’ve had moments where we will grieve together, [but] he doesn’t talk about it, not even with mates.”

Avoiding discussion is a common way some people cope, but Dr Noonan says the best way through it is trying to being open with each other.

“I guess the first thing is to acknowledge just how bloody hard it is,” Dr Noonan says.

“[We think] ‘Oh she’s got enough to worry about, I can’t talk to her about how scared I am about the future, so I’ll just suck it up and keep going and same [goes] the other way’.

“Everyone’s protecting everyone, but no one’s actually talking and that can be one of the biggest barriers.”

After going through intensive treatments like chemotherapy, intimacy is often the last thing on a couple’s mind, but Dr Noonan says it could provide the comfort and sense of relief that the relationship is longing for.

“People may not want to feel like having sex as such, but they may really still have that great need to touch, connect and have comfort from that touching and connecting,” she says.

Claire and her husband find it hard to talk about the future, but something that’s helping them is focusing on the present.

“We focus on making memories,” she says.

“My husband gets through it by planning extravagant trips in his mind … he bought his own calendar to write down where we’re going and put [down] every country.

“[He] is super optimistic and it really kind of keeps me together,” she says.

‘I allow myself to be sad, but I don’t let it overcome me’

Claire’s been given a life expectancy date by her doctor, and she says there are days where she feels anxious about it.

“My oncologist ended my appointment with a ‘you better make holidays this year’ and that’s a real downer but it’s also a reality,” she says.

To help ease some of the anxiety, she takes antidepressants, but it’s her family who help her through those difficult days.

“I allow myself to be sad, but I don’t let it overcome me,” she says.

“I’ve got ive girls who need me, and they are the ones who make me get out of bed and try to keep [life] as normal as possible.”

Complete Article HERE!

Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope


Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.

By Bernard J. Wolfson

When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

A photo shows two nurses attending to 17-month-old Aaron Martinez while his mother, Adriana Pinedo, holds him.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

A photo shows Aaron Martinez sleeping in a crib.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

A photo shows a nurse giving 17-month-old Aaron Martinez medicine via an oral syringe.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

A photo shows Adriana Pinedo sitting at home and feeding her son, Aaron, with a bottle.
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

Complete Article HERE!

It’s not easy to tell kids about death.

But the stories we spin can help light the dark

Alice Matthews helps palliative patients write their life story, sometimes with a “children’s book” version for their kids.

By Justine Toh

When we think of how we’ll be remembered after death,  it may seem that simple words and basic descriptions don’t do us justice.

But for parents with a terminal illness and those on their deathbed, plain language is sometimes best.

“Dad was an artist. He painted the world that he saw. People loved his drawings.”

How else do you tell your life story — or explain death — to a young child?

Alice Matthews knows something of the challenge of putting a life into a story.

Since 2017, the SBS and ABC journalist has volunteered as a biographer with the Sacred Heart Community Palliative Care Biography Service based at St Vincent’s Hospital in Sydney.

The work involved sitting by the bedsides of the dying and, over a series of sessions, recording their stories.

For Alice, bearing witness to people’s lives, crying along with them, helping them grieve, reflect, and consider their legacy was an enormous privilege.

“We talk a lot in the service about holding space for someone,” she told RN’s Soul Search.

“There is an incredible spirituality in doing that, sitting with somebody, being with them and not really having to say or do anything except that.”

Death: the storybook version

Alice mostly saw elderly clients, part of a group often “shunted and pushed aside” by the wider world.

“What better way to return value to them than to sit and talk about their life and the value of their life which hadn’t disappeared,” she said.

Such clients often met their deaths with acceptance or comfort in their various religious and spiritual beliefs.

Others died “before their time”, as we would say.

If they had young children, Alice would put together a “storybook” version of their dying parent’s longer biography.

Girl reading a book, with LOVE written on her long-sleeved t-shirt
Some of the best-loved children’s books feature themes of loss and death.

For one client, a dad with a young daughter, Alice worked with the family to come up with a child-friendly “circle of life” explanation of death.

“I remember sitting in the room with them as the wife read it to her husband. That was one of the moments where we all sat there in tears,” Alice said.

“I didn’t know how he would react. He wasn’t verbal at that point.

“We waited a moment and then saw that he’d typed: ‘That was beautiful.’

“That was one of those moments where you feel the entire weight of the heartbreak — but also the relief.”

Once upon a time

Another writer who understands this struggle to give language to death is author Chloe Hooper.

Chloe’s partner Don Watson, the historian, author, and speechwriter, was diagnosed with an aggressive form of leukaemia in 2018. Things looked grim.

Then there was the uncertainty: how to explain his possible demise to their young sons — Tobias, then six, and Gabriel, three at the time.

Author Chloe Hooper wearing blue turtleneck, and light-pink shirt.
Writing offered some comfort in the face of grief for author Chloe Hooper.

Few age-appropriate titles on the shelf seemed right. So, Chloe embarked on a quest to find the perfect book.

“The right story can help us find a path through the forest. It can help us take our straw and weave it into gold,” she said.

“Quite quickly, I realised that storytelling and perhaps re-storying this situation would be a way to help us through.

“The electricity and potential of ‘Once upon a time’ might be a way for us to light the dark.”

Chloe’s search for the best words to explain death — recounted in her book Bedtime Story — turned up the innumerable ways in which adults have explained death to children.

Grief and enchantment

Along the way, she made a surprising discovery: beloved children’s authors had suffered significant bereavement in their lives.

Roald Dahl, for one, described himself as “limp with despair” as he began writing Charlie and the Chocolate Factory after losing his seven-year-old daughter.

Dahl wasn’t alone. The Brothers Grimm, Hans Christian Andersen, J R R Tolkien, Frances Hodgson Burnett, C S Lewis, J K Rowling — death had touched them all.

Black and white photo of writer Roald Dahl holding onto his cane, standing in front of shed.
Writer Roald Dahl was familiar with death, both in his personal life and in his children’s books.

Writing couldn’t overcome death, but it seemed a comfort in the face of it.

“It made me realise that an ingredient of enchantment is grief,” Chloe told me, referring to the often magical settings of the stories penned by those writers.

What she was looking for — the perfect story to tell her children about death — “was embedded in all of the stories that surround us.”

Mythic narratives similarly stalked the border between life and death, Chloe noticed.

Descent and return narratives saw characters like the Greek hero Odysseus — and even religious figures like Jesus Christ — descend to the dead before returning to the land of the living.

These stories, and their authors, couldn’t help but stray into spiritual territory.

For Tolkien, fairy tales were ultimately about escaping death. C S Lewis, author of the Narnia series, found himself a Christian after becoming convinced that the story of Jesus Christ’s death and resurrection was what Tolkien called a “true myth”: the fairy tale that came true.

‘Everything will be alright’

Plenty of people — including Chloe Hooper — are agnostic about that.

But every parent knows it’s their job to protect their kids. According to the late sociologist and theologian Peter Berger, “to become a parent is to take on the role of world-builder and world-protector”.

For Berger, this makes parents practically godlike.

Parents represent “the underlying order of the universe that it makes sense to trust,” he writes in A Rumor of Angels: Modern Society and the Rediscovery of the Supernatural.

Take the most basic parenting move: hushing a crying child in the dead of night. For Berger, when a mother rocks her bub, murmuring “Everything will be alright,” she relates to her child the way we imagine a god should relate to their creation.

Even the most ardent skeptic gets that a god’s job is to guarantee order and safety and beat back the encroaching darkness.

This casts new light on the stories we spin about death: from fairy tales to storybook versions of the “circle of life”.

What are these if not our attempts to love those we must eventually leave? Our efforts to weave out of the world’s sadness a life-giving spell?

Perhaps we’d rather not read the stories of our lives that get written on our deathbeds.

But even if such stories are prompted by the most decisive of endings, they pulse with love and concern for the living left behind.

Death doesn’t exactly get the last word because these stories are, in the end, about life.

Complete Article HERE!