Category: Talking about death

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The final act of love: reclaiming the rites of modern death

As people search for ways to reclaim death from the funeral industry, a home vigil can help with the grieving process

‘‘Death loses its power over us when faced matter of factly.”

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[P]ete Thorpe was a wiry, strong and vital man. He loved his children, his wife, Fiona Edmeades, and the home they shared in Bondi. At 69, he was a well-known local character who was regarded with great warmth by all who knew him.

In early October he was laid up with stomach flu. It struck and didn’t budge for two days. Everyone expected that he would be back on his feet by the weekend. But on the evening of the third day – a Tuesday – Thorpe died suddenly of a heart attack.

“It was the last thing on earth … ” Edmeades explains, looking out of the window of their flat into the treetops, searching for the language to convey the shock of how her life had ruptured. “He just died.”

In the chaos of the hours that followed that moment, she knew one thing – Thorpe was not going anywhere.

“I knew I wanted to keep him with me,” she says. “Pete was Māori so that is the tradition in his culture – I had attended a couple of tangis so I knew it was possible.”

The tangi is a Māori death rite that involves close and extended family remaining with the dead for three days to mourn and honour them. “I just felt there was no way they could take him away,” she says.

Edmeades’s GP wrote a death certificate for Thorpe that night, which meant his body didn’t have to be taken away to the coroner’s. He could stay in the flat with his family, under New South Wales regulations, for five days.

He remained there until Friday afternoon. He was mourned at home and his funeral, organised by local funeral directors, was held there. Friends visited the flat and cried for him and told him jokes and sang songs and slipped small gifts into his hands. Extended family decorated his coffin in the back garden. Edmeades and their children placed him into it and sealed the lid themselves. They drove him to the crematorium and accompanied his coffin to the furnace door.

Edmeades says having him at home with her, their children and friends, helped her to process his death. It helped her face up to the fact that he was gone, especially because his death had been such a shock.

“As hard as it was to look at Pete and see it wasn’t Pete any more, it is just his body, it was so much less hard than having him disappear – poof,” she says.

“To be able to understand it in your body on a physical level means you can free yourself from the denial. Seeing that lifeless body is how you come to terms with the death and if you can’t come to terms with the death, how can you grieve? It would have been so traumatic if he just disappeared.”

Instead of Thorpe’s body being taken away that night to lie alone in a morgue or funeral home, Edmeades made a bed for him in the sunroom adjacent to their bedroom. It was his favourite room in the house and, with him there, she and her daughter could lie on their bed on that first night and see him.

‘I just felt there was no way they could take him away,’ says Fiona Edmeades of her husband, Pete Thorpe (pictured), who died suddenly.

“I was able to look at him all night and slowly understand the changes and that things had changed. He was still there and I could see him but the change was real, in such an unreal time.

“I would doze and then wake up and there was this wave of feeling utterly lost, but then there was Pete, anchoring me back in the world.”

The family’s story is becoming more common, as people decide to take death, dying and the days after death away from the medical and funeral industries and back into their own hands and homes.

Victoria Spence, an independent funeral celebrant and death doula, has noticed a groundswell of people in Australia over the past decade wanting to reclaim death for the family and the community.

Spence has worked with the dying, their bodies and the people they leave behind since the 90s when her father’s terrible funeral – the celebrant repeatedly got his name wrong – inspired her to train as a counsellor and civil celebrant specialising in end-of-life and after-death care.

She has seen communities transition from the need to whisk the dead away, hide them in a box inside a funeral home and then bury them in the ground like a secret. Instead she empowers the bereaved to bring their dead home from the hospital, wash them, dress them, hold their hands, talk to them, play music, build their coffins and hold their funerals in the community centre, school or living room. Taking death back in this way can set the groundwork for healthy grieving, she says.

“People feel alienated by the medicalisation, professionalisation and corporatisation of dying that has taken place,” she says. “Death has become a cultural blindspot for us and people want that to change.”

It is a sentiment echoed by Prof Ken Hillman, author of A Good Life to the End, who argues that death has become the new taboo – like sex was in the 1970s.

Pete Thorpe’s extended family decorated his coffin in his Bondi back garden.

“We only talk about [death and dying] in hushed tones,” he writes. “The subject of death and dying need to be brought into the open. There will be so many benefits for us as a society and individuals. Death loses its power over us when faced matter of factly.”

But dealing with death matter of factly is not always straightforward.

Often the thing stopping the bereaved from keeping their loved one at home is the lack of preparation and knowledge about what comes next, Spence says. Fear of the changes that take place in a dead body is also a potent deterrent.

“There is an increasing desire but not the knowledge to help people get ready and get the equipment,” she says.

The most important part of equipment for someone wanting to keep a vigil at home is the cool bed, a stainless steel plate that goes underneath the dead body and is usually set at 1C to 5C, keeping the corpse stable by slowing decomposition.

“Our dead change,” Spence says. “The body stiffens, the skin changes, there can be swelling and leakage. The cool beds slow down all of these processes, you get into a state of stasis.”

Once the bed is installed, Spence says, “It is very comforting to hang out with the body for a couple of days. Nothing untoward or scary happens.”

People holding vigils are often surprised at how peaceful and beautiful the dead are, she says.

Fiona Edmeades worried about all of this when Pete Thorpe died. But a close friend knew about the cool beds and the funeral home organised one.

“The cool bed changed everything because it reduced the aspect of the unknown and the fear that comes with it,” she says. ”Here is this amazing device that enables you to do what you want to do. It just feels so natural.”

Over the three days after Thorpe’s death, their home filled with friends and family. At first, some were hesitant to see him but their reticence always gave way.

“Lots of people who hadn’t seen a dead body before came. One child came and asked, ‘Can I touch him?’ and we talked all about it. When you are in it, it is so natural and gentle and beautiful – it is a beautiful way of saying goodbye.”

For her, having Thorpe at home, and a river of people wanting to come and show how much they loved him, made her own grieving easier.

“It helped us to deal with it together as a whole. In those first few days the weight of the grief is so overwhelming. Sharing Pete’s death with the community in this way helped spread the load. It felt like everyone was carrying a bit, as we slowly came to terms with what had happened.”

Complete Article ↪HERE↩!

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In the 16th Century, the Best Office Decor was a Tiny Rotting Corpse

Miniature memento moris were all the rage for around 300 years.

A 16th-century memento mori attributed to Hans Leinberger.

by Ella Morton

[T]here are many additions you can make to your office desk in order to remind yourself to stay motivated, seize the day, and make every minute count. A mini zen garden or framed motivational quote, for instance; maybe a page-a-day calendar with a kitten hanging from a branch.

Or a 16th-century statuette of a rotting corpse.

The wooden carving above, sculpted by German artist Hans Leinberger in the 1520s, is a memento mori—a reminder of human mortality designed to keep its owner humble, focused, and untethered to worldly possessions. In 16th-century Europe, these stark odes to humanity’s transience appeared in the form of tomb effigies, full-sized statues, and smaller sculptures perfect for a tabletop.

The predominant image of these artworks was that of the upright corpse, depicted with a torn flesh suit and exposed ribs. The figure sometimes held an object; the corpse in Leinberger’s sculpture clutches a scroll with a Latin inscription that translates to “I am what you will be. I was what you are. For every man is this so.” 

One of the more striking full-sized memento moris of the era is the statue of René de Chalon, a French prince who died at 25 in the 1544 siege of Saint-Dizier. Known as a transi—for its depiction of human transience—the sculpture shows the prince’s desiccated corpse holding his own heart aloft.

The transi of René de Chalon.

Post-Renaissance, portable memento moris continued to be sculpted, with half-human, half-skeleton figures offering a slightly less gruesome way to remember one’s mortality. The half-half statuettes below were created in the early 19th century to encourage “spiritual contemplation.”

Memento mori figures from the early 19th century.

The wooden carving below, which was created in 19th-century Italy, shows a woman’s head with half her skull exposed. Note the baby snake wrapped around her mandible. Note also that despite the facial decay, her ruffled collar and lace cap are perfectly intact.

A 19th-century Italian memento mori.

Those preferring a more subtle, easily concealable reminder of death—one that can be whipped out for contemplation during a train ride, then stashed in a pocket on disembarking—could opt for a pendant-style memento mori like the one below. It dates to either the 18th or 19th century.

Skeleton in coffin pendant, Europe, 1701-1900.

Regardless of their size and level of grisliness, portable memento moris all offered the same message: life is short, you will die, and earthly possessions don’t matter. The fact that this message was contained in an earthly possession is just part of the thrilling paradox that is human existence.

Complete Article ↪HERE↩!

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Why you should make end-of-life care decisions now

By Kristen McConnell

[M]odern medicine has developed the God-like power to stabilize the vital signs that spiral out of control as a person approaches death, and to then keep that person alive despite their inability to breathe, eat or drink. It wields this power liberally.

But the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an ICU nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care.

I think of a young woman whose family was so torn apart over whether to take her off life support after a hemorrhagic stroke left her comatose that by the time she died of a complication, weeks later, nobody came to be by her side.

When she was first admitted to the hospital, her family crowded her room. But when she didn’t get better, they drifted away. She stayed, her flesh peachy after weeks of tube feeding, though speckled with the tiny bruises of blood-thinning heparin shots.

She died of a perforated bowel leaking fecal matter into her abdomen and causing sepsis. Her family had declined emergency surgery over the telephone, giving permission for her to die. At the very end, there was only a nurse, dialing up morphine as the patient’s organs failed.

I can only imagine the immense suffering her family endured, and I know that every time they were asked for a decision regarding her care, they tried to make the right one.

But I wonder: If what was left of the girl in the hospital wasn’t enough to come say goodbye to, if she was too far gone to hold hands with as she drew her last breaths, why was she still there?

I also think of an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke. He was already completely immobile, dependent on care and unable to communicate. His breathing was inadequate and his heart went into a dangerous rhythm — dangerous if the goal is to stay alive. He was intubated and taken to the ICU.

The poor man was awake. He would occasionally squeeze a hand when asked to, but he never responded to questions. Because there was no fear of him pulling out his breathing tube, he was on minimal sedation, getting drugs only when he breathed rapidly or started “bugging out his eyes,” as one nurse put it. Aside from a list of diagnoses and meds, there was little information in his history, and no family contacts.

When asked directly by the ICU, the patient’s case manager and his general physician both refused to serve as his proxy and would not participate in a conversation about whether the patient would rather switch from life-sustaining measures to “comfort care,” which would have meant removing the plastic tube from his trachea and allowing him to die naturally, with supportive care and medicine to make him comfortable. So we kept him alive.

When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.

When I stick a needle into his arm, or a catheter into his urethra, it feels as though I am kicking a homeless person. The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It’s a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren’t given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don’t really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a healthcare proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Medicare began reimbursing physicians for advanced care planning in 2016. And many states have adopted POLST programs — Physician Orders for Life Sustaining Treatment — in which medical orders can be written in advance. Still, two-thirds of Americans do not have any type of advance directive in place.

These documents are critically important. If you don’t want to be kept alive on life support, you can indicate as much in your advance directive. If you want the longest life possible no matter what, you can affirm this wish. Either way, families and care providers should know. It will help move our medical system toward a more humane approach to end-of-life care.

Complete Article ↪HERE↩!

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What Jewish law says about suicide and assisted dying


Jewish law recognises patient choice as decisive in some situations where assisted dying may be an option.

By

[I]n November, Victoria became the first Australian state to legalise voluntary assisted dying. From mid-2019, competent, terminally ill adults who are stricken with an incurable and progressive physical or mental disease and unable to gain relief from their suffering will be able to access a substance that will let them end their lives.

The law reflects the contemporary secular approach to biomedical law and ethics, in which individual autonomy trumps the principle of the value of human life.

In line with this approach, competent terminally ill adults who find themselves trapped by disease from which they feel that their only deliverance is death may choose to end their lives in accordance with the law.

By contrast, Jewish law (halakhah) is obligation-based, and the preservation of human life is a cardinal commandment. Both suicide and self-endangerment are forbidden (Genesis 9:5; Deuteronomy 4:15). Maimonides explains that our bodies are Divine property and any deliberate attempt to destroy them is prohibited.

A similar view is attributed to Socrates in the Phaedo. He states that, in general, suicide is forbidden since it infringes on the property rights of the gods.

‘Soft autonomy’ and assisted dying

Jewish law recognises patient choice as decisive in some situations. This is not so much a value as a solution to a particularly difficult case involving a clash between two competing values.

Famed Jewish law scholar and rabbi Moshe Feinstein used this type of “soft autonomy” in a case in which a patient wanted to risk an assured but low-quality short-term lifespan for the possibility of gaining long-term life expectancy.

In permitting the patient to choose the highly risky operation, Rabbi Feinstein held that if rational people in general would be prepared to choose the operation, it would constitute a legitimate option – and ownership of the body would be transferred to the patient.

In another decision, he ruled that a competent, terminally ill adult ought not to be pressured into accepting artificial nutrition, even though failure to do so would precipitate his death. Here, Rabbi Feinstein took the terminal patient’s wishes into account. He laid down the principle of non-traumatisation of the terminally ill.

‘Soft autonomy’ and suicide

This soft autonomy model is also applicable to suicide.

In general, suicide is forbidden under Jewish law. Sanctions include non-observance of mourning rites and separate burial. However, there are situations in which a person may choose to take their own life because of a conflict between legitimate halakhic values.

The biblical account of King Saul’s suicide is interpreted to mean that one may take their own life to prevent the desecration of the Divine name by having a king of Israel fall into enemy hands.

Another view is that suicide may be committed to avoid physical or mental suffering. With regard to the permissibility of suicide during the Holocaust, Rabbi Ephraim Oschry permitted suicide to avoid the agony of witnessing the destruction of one’s family and community – but added that the decision should not be publicised.

The lesson to be learned from this is that any relaxation of the prohibition on suicide in cases of extreme suffering should be accompanied by a public education program. This program would be designed to both strengthen the value of life and deepen society’s understanding of its fundamentally sacred nature.

Complete Article ↪HERE↩!

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‘It’s all about making this better’

In the season of giving, hospice grants patients’ end-of-life wishes

From left, Deborah Holmes, Leslie White and Lisa Price work with patients of all ages at Seasons Hospice. Their job is to provide comfort and love to a person in his or her last days, weeks and even months.

By Isabel Hughes

[D]eborah Holmes adjusted her glasses, eyes watering as she glanced up at the ceiling of Seasons Hospice’s family room.

“I’m glad I didn’t wear mascara again today, though none of us [nurses] do much because we cry so often,” she said, smiling as her voice cracked. “I’ve almost given up wearing glasses they fog up so much too.”

Steadying her voice, Holmes laughed — a mixture of sadness, humor and joy.

Though the holiday season is often thought of as an especially important time for giving and making wishes come true, for Holmes and her fellow employees at Seasons Hospice, every day is an important time to grant wishes to their patients, the overwhelming majority of who are dying.

Unlike hospitals, which mainly focus on curative measures for patients — even those who are terminally ill — hospices are intended to provide comfort and love to a person in his or her last days, weeks and even months.

Hospice workers give the gift of dignified end-of-life care daily, holiday season or not, Holmes said, which she added is the most rewarding part of her job.

“Seeing those patients be free of those acute symptoms — to not be writhing in pain, to have that hospice success, to see them share laughs and hugs and things with their grandchildren and their own children — that’s the best,” she said.

“At night when I lay down — and it’s me and God, that’s who I deal with — knowing that that family member made it for their son to come home from the military, for that nephew to come in from out-of-state, for that patient to have their cat on their lap or for them to eat lunch without their oxygen because that’s what they want to do and they don’t care how low their stats drop, it’s those things, just making sure they have what they need, that’s my measure of success.”

The success varies from patient to patient, though, who range in age anywhere from 18 to 98.

“We do get very young patients; usually 18 years old and up, though we do get a lot of 30s, a lot of early 40s and 50s [and] a lot of 60s,” Holmes said. “Usually, cancer is the culprit, unfortunately, and those are especially hard because the [patients] generally have young families and their parents are still with us a lot of times. To have that parent experience the loss of their child at such an early age is absolutely devastating.”

As she continues, Holmes’ smile fades, sadness beginning to cloud her coffee-colored eyes.

“I’ll be honest,” she said. “In my 25 years of nursing, fortunately and unfortunately I’ve been involved in quite a number of situations where you do kind of go numb after a while. When I meet these family members, too, they don’t know what hospice is and I think it’s because there’s not a lot of talk in the community about hospice.

She added: “We’re not here to take anybody’s lives; we’re here to enhance the time that is left, so I do comedy with them. I may crack a little joke and I kind of develop a little joke with each and every family member or patient and that’s what I keep thinking about. It just brings a smile to my face because you know that was a connection that you made with those people.”

It’s the connections, too, that hospice employees make with one another that lighten the nurses’ daily burdens, as well as family, friends and pets.

In Bulldog country, the University of Georgia’s recent SEC championship and the team’s January trip to Pasadena, Calif., where they’ll challenge No. 2 seed Oklahoma in the Rose Bowl Game, also helps, Holmes said.

Lisa Price, one of the facility’s social workers, smiled, half-whispering ‘Go Dawgs’ as Holmes paused, mid-sentence.

“That’s the thing about it,” Price interjected. “We’re a big team and none of us could do our job without the others and the families, too. We have a good social and psych support here, and we’re a team.”

That team is part of what keeps Holmes coming back to work every morning, good days and bad. Her patients, too, make the job worth it.

And, at the end of the day, Holmes said she also knows she can turn on her radio, cued to a Pandora comedy station, and just laugh.

“I have a really good sense of humor; I love to laugh and I love to crack jokes,” she said. “I think it’s real important to keep a good sense of humor because even patients who are terminal, they still like to laugh and joke and kid, and we really enjoy that part, too. It’s not all crying; it can be, some situations that’s just where you’re at, but it’s all about making this better.”

Complete Article ↪HERE↩!

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When Grief Becomes a Mental Health Issue

By Becky Oberg

[W]hat do you do when grief becomes a mental health issue? Recently I lost a friend to suicide, and it made me think of all the other losses I’ve suffered. Two memories stand out in my mind–the death of my maternal grandfather to cancer and the death of my paternal grandmother to a stroke. One was a mental health issue, the other was not. There are several things people can do when grief becomes a mental health issue.

Grief and A Tale of Two Deaths

My maternal grandfather got cancer in the ’80s, when it was a virtual death sentence. My family never discussed it. It was especially hard on my mother, who took the stress out on the children. To this day, she does not like Halloween (when he was diagnosed), Thanksgiving (the last holiday he spent with the family; he told us to go and eat the turkey instead of worrying about him and we children said our final goodbyes), and Christmas Eve (when he died). Things at home fell apart, and I became well acquainted with depression–to the point where a teacher said something. It took me years to even talk about it–it led to emotional abuse at home, where it was understood we would “get over it.”

The death of my paternal grandmother was shortly after I graduated college. The family supported each other, and it didn’t hurt as badly even though it was sudden. My boss gave me time off and sent flowers, and the town brought enough food to feed all 13 of us immediate family members several times over (as my cousin said, “We’re Germans. We eat.”) I left shortly after the funeral because I had a psychiatrist’s appointment the next day. She said to me, “You look depressed. I’m increasing your medication.”

I replied, “I just buried my grandma. I’m supposed to look depressed. If you’re going to increase my medication for normal reactions to life events, this is just legal substance abuse.”

It did not go over well, but I still stand by my statement. Sometimes grief becomes a mental health issue, but, sometimes, it doesn’t. It depends on a number of factors.

Factors in Grieving Becoming a Mental Health Issue

Obviously, the relationship you had with the person will impact your grieving. But so will several other things, like the way he or she died, religious beliefs, and support from other family members and friends. Having lost friends to suicide, murder, disease, accidents, and natural causes, I can honestly say traumatic death is harder on the survivors and almost always requires mental health counseling. But it seems to be random when it comes to non-traumatic death.

Faith is a double-edged sword. It can help the loved ones to know the deceased is no longer suffering. However, as is especially true in the case of traumatic grief, faith can be sorely wanting. Questioning “why” can be frowned on in some circles, but sometimes we need to question “why.” In addition, religion frowns on suicide–mourners at my friend’s funeral remarked that it was good we could talk about it since they wouldn’t be able to at most churches.

Support is crucial. I remember when a psychologist made an offhand remark to me about “the first year” of grieving. Seeing my puzzlement and concerned about my comment, “Aren’t we supposed to be over it by then?”, he explained that grief is a process that doesn’t have a time limit or set order (Nine Common Myths And Realities About Grief). He also explained to me it was okay to talk about it–and I joined his grief support group to do just that.

How to Tell When Grief Requires Mental Health Help

I needed help after my maternal grandfather died, largely because my mother needed but did not get help after his death. As she cycled through denial, anger–a lot of anger–and depression; it seemed she would never accept it. She became emotionally abusive toward us kids, but maintained some semblance of a normal life for years. No one knew the hell that was going on at home. Eventually she came to terms with it, but not before some lasting damage was done to us kids.

If you can’t talk about your grieving, you need mental health help. If you take your grief out on others, you need mental health help. And if you want to join your deceased loved one sooner rather than later, run, don’t walk, to a counselor (Suicide Prevention Chat: How Does It Work?).

Remembering the loved one will bring happiness and pain, sometimes within hours of each other–as my then-six-year-old brother observed after my maternal grandfather’s funeral, “People go to the church and cry then come back to the house and have a party.”

It is normal to reflect on the life of one who died, the circumstances leading up to the death, the death itself, and the funeral with mixed emotions. Obsessing, however, is not, and neither is constant sadness. Seek mental health help if grief begins to interfere with your ability to live your life.

You deserve to come to terms with the death of your loved one, and chances are that’s what your loved one would want. Don’t hesitate to ask for mental health help if you need it.

Complete Article ↪HERE↩!

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The Long Goodbye

Coping With Sadness And Grief Before A Loved One Dies

By Judith Graham

[F]or years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.

Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.

This pileup of complex emotions is known as “anticipatory loss.” “The deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn’t built into the health care system,” said Dr. John Rolland, professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Families, Illness and Disability: An Integrative Treatment Model.”

Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:

Acknowledge Your Feelings

“Grief starts the moment someone with a serious illness receives the diagnosis,” said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn’t stop there. Each time a capacity is lost — for instance, an older adult’s ability to negotiate stairs, to drive or to manage household finances — sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to “normalize them, because people don’t understand that everyone goes through this.”

Talk Openly

When families avoid talking about an aging parent’s frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.

“My view is, you’re better off trying to get through whatever you’re facing together,” Rolland said.

When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they’d like to discuss but don’t. “Usually, there’s about a 75 percent overlap, and it’s a tremendous relief to most people to find out they don’t have to keep things locked up inside,” he said.

“People who are facing serious illness think about what might lie ahead all the time,” Rolland said. “For a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn’t helpful.”

Communicate Sensitively

Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.

“People with these conditions aren’t the same as they were before, but it would be heartbreaking for them to know that you didn’t see them as the same person,” she said. “So, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.”

In her practice, Marks asks “people to share what each person is going through and not worry about protecting each other from what they’re feeling,” she explained. “Because protecting each other leads to feeling more alone and magnifies the feelings of loss.”

For a caregiver of someone with dementia, that might mean saying,“Sometimes you might see a look crossing my face and think that I’m disappointed. It’s not that I’m upset with you. It’s that I’m sad that there are things that happened in our past that we don’t remember together.”

For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who’s disabled.

Lean In

How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who’s frail or ill, and the nature of that person’s condition.

“Sadness can make you cherish a person even more and appreciate small moments of connection,” said Barry Jacobs, a Pennsylvania psychologist and co-author of “AARP Meditations for Caregivers.”

Some people, however, can’t tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.

If possible, lean in rather than letting yourself become distant. “Cherish the time that you have together,” Jacobs said. “Rather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.” In the end, connection eases the pain of grief, and you’ll be glad you had this time with the person.

Seek Support

“Don’t confront grief alone or in isolation,” said Alan Wolfelt, founder and director of the Center for Loss & Life Transition in Fort Collins, Colo. “Have people around you who are supportive and who will be present for you” — family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.

Ultimately, this journey will help shape how you ultimately experience a loved one’s death.

Wolfelt describes mourning his mother twice. “The day she was diagnosed with Alzheimer’s and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.”

But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family’s decision not to pursue further treatment. “It was OK that she died because she was ready — she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.”

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