Tag: Education

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Finances After The Death of a Spouse

– Creating a “Just In Case” Checklist

By Kyle Prevost

Preparing for the death of a spouse has got to be one of the worst personal finance tasks out there.

I think it might be slightly easier for us to prepare for our own demise than it is to place that burden on our spouse. That statement is especially true if your household division of labour is “the norm”, in that one spouse generally defaults to handling most of the financial planning and paperwork.

As I’ve been writing more and more about retirement lately, the idea of a “just in case” file or a “just in case” checklist has come up more and more. I’m not just talking about complicated tax issues to consider when a spouse passes away, or complex estate maneuvers. I’m more referring to how to handle the basic nuts and bolts of day-to-day life.

And remember, if you’ve decided that one spouse is going to be chiefly responsible for the finances, that individual does not have to pass away for a very bad scenario to occur. Cognitive decline is an unpleasant reality for many of us, and there is no obvious way to tell that someone has reached the point where they are decisively not able to handle the household finances any longer.

Planning sooner rather than later for that day is a responsible way to handle an unpleasant situation.

Financial Planning for Death

While financially planning for the death of a spouse – or your own trip to that great tax haven in the sky – is one of the least fun afternoons that I can contemplate, it is quite likely to head off some truly awful scenarios down the road.

Before preparing a “what to do when a spouse dies checklist” like the one below, let’s just get this important step out of the way first and foremost: You really do need to get that Will, Advanced Care Plan (often called a “living will” thanks to US media), and Power of Attorney set up if you haven’t already.

Yes, it’s boring – but it doesn’t have to be time consuming and expensive. I wrote about my personal experience creating a will a few years ago. It cost me $32 and took about an hour.

Also, consider taking an additional half hour to designate the recipient of non-financially valuable possessions that may not have made it into your will. I know several family squabbles that were caused by a combination of grief and irritating disputes over family heirlooms or relatively small possessions that seem much more important after someone has passed away.

What to Put In My “In Case I Die” Checklist

1) A “How To” for Notifying Service Canada of Your Death

Your OAS benefits stop when you do. Your CPP benefits on the other hand are a bit more complicated. You can read our Ultimate CPP Guide for more benefits information, but the most pressing issue will be collecting the death benefit that is part of the program.

2) Transferring Registered Accounts to Surviving Spouse

Ideally you have read our What Happens to Your TFSA and RRSP After You Die article and have identified the beneficiary and successor holder on your accounts. Those accounts will now have to be transferred to your name solely.

3) Removing Name From Shared Accounts and Utility Bills

When someone passes and is survived by their spouse, their name needs to be taken off of shared accounts, as well as utility bills, etc. A list of these accounts will come in really handy.

Settling and Cancelling Credit Cards

If you are always the one that paid the credit card, directions on how to do that, and then cancelling the credit card (or removing one name from the account) are essential.

5) A visual Step-by-Step Cecumulation Plan if You’re Still Managing Your Own Assets – or Revisiting The Idea of an Annuity/Robo advisor.

Robb Engen over at Boomer and Echo was the one who alerted me to the issue of one spouse often being the household “Chief Financial Officer” – and then passing away – leaving a huge burden of responsibility on the remaining spouse when it comes to maintaining the household decumulation plan.

Robb is a big fan of shifting over your assets to a robo advisor sooner rather than later, as they can assist a surviving spouse with basic retirement income mechanics such as selling investments and moving money to a chequing account. They’re also a great option for automating a RRIF drawdown for example.

I think as one gets older and knows their days of handling complicated decumulation strategies are starting to recede into the rearview mirror, the idea of revisiting the idea of annuities really makes a lot of sense.

Regardless of what path you choose, some combination of current-day learning, easy-to-understand graphic organizers showing a step-by-step process, and very specific directions as to what to do with investments, should really be a priority.

Remember, this stuff can be like a very intimidating new language for non-financially savvy folks. We’re looking at a situation where a spouse will have to learn that new language as they grieve and take care of 101 other things. Making things as easy as possible will be much appreciated.

6) A Passwords List

This can likely be combined with the “important stuff binder” below. A non-hackable physical document that either provides simple hints to passwords, or partial passwords, should be written out and stored in an ultrasafe location such as a safety deposit box.

Just think about all the passwords your digital footprint likely includes these days. Take a half hour and make this simple.

7) Navigating Probate and Life Insurance

As part of your will you should think about how the sequence of events will occur once you pass away. Our life insurance for seniors in Canada guide will explain both why you shouldn’t get talked into insurance that you don’t need, as well as what happens to a life insurance payment when you pass. Make sure all of the relevant contact details and the processes involved are easy to find.

8) A Physical Binder of “Important Stuff” For a Safety Deposit Box

In this day and age of online storage you might prefer to make copies of important documents and store them in a super safe online storage solution. But personally, the vast majority of folks that I know are still reassured by the idea of a physical copy of something in a safety deposit box.

Upon your death or the death of a spouse having important documents like birth certificates, marriage licenses, lists of accounts and/or loans, property deeds, pension information, contact details of professionals that you depended on such as accountants or advisers, etc – easily accessible will greatly reduce stress during an inevitable stressful time.

You can also put copies of keys in this binder as well if you really want to make life simple.

Consider leaving a copy of that binder with the trusted individual who will be the executor of your will.

Conclusion – How to Plan for the Death of a Spouse or Loved One

From my limited experience, there is no real way to prepare for the emotional trauma of losing a loved one. That said, there is no need to compound that grief by failing to prepare financially for the death of a spouse or your own demise.

Getting your affairs in order sooner rather than later can mean saving untold heartaches and headaches down the road, so I really do think it’s worth taking the time to do it right.

Complete Article ↪HERE↩!

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The End of Life Debate

— More states and countries are enacting laws to let terminally ill patients in great pain decide for themselves when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

A person holding a "end of life consultation" pamphlet. Next Avenue, end-of-life debate, medical aid in dying
A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words Matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, DC, where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where It Is Legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

  • Patients must be adults with a terminal illness and a prognosis of six months or less to live.
  • Attending physicians must verify patients are acting voluntarily.
  • Patients must be able to make and communicate their decision to health care providers.
  • Patients must be able to self-administer (ingest) the medication.

Differences Among Laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Headshot of a woman. Next Avenue, end-of-life debate, medical aid in dying
Kim Callinan, Compassion & Choices

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute non-resident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

Fine-Tuning Legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Complete Article ↪HERE↩!

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Death Cafes

— You’re Going Where?


By Marilyn Mendoza

The Death Positive Movement

In Victorian England, death was in the forefront of society. People would begin talking and planning for their death when they were young. By the time someone died, there was no doubt about what was wanted and how it was to be carried out. Women would even make their shrouds to be included in their wedding dowry.

Since that time, we have made a complete reversal in how we deal with death, from being the center of one’s life to rarely being discussed. However, continuing to ignore it will not make it go away. Death is coming for all of us.

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In 2011, the Death Positive Movement began. Since then, it has been providing opportunities for people to talk more openly about death and dying. Its goal is to decrease the stigma of death. However, many people are still unaware of the movement and the activities associated with it. Perhaps one of the better-known activities associated with the movement is the Death Cafe.

Quite simply, Death Cafes are places that you can go, for free, to feel comfortable and safe talking about death. Actually, you do not even have to talk if you don’t want to. There is no planned agenda, and anyone can bring up a topic to discuss. It is free. Cake and tea are always served and sometimes other beverages. The Cafes are currently found in at least 80 different countries. Sometimes the group may be run by a mental health professional, though most of the time it is someone who has no training in groups or mental health.

While Death Cafes are not meant to be support or therapy groups, I have generally found that people who attend these meetings are warm and supportive of each other, sharing a common bond in accepting mortality. Other activities associated with the movement are Death with Dinner and Coffin Clubs. Often Death with Dinner consists of smaller groups who might get together at someone’s home for dinner and discussion about death.

Coffin Clubs have been popular in New Zealand, England and Ireland, although I am unaware of Coffin Clubs in the United States. People get together to build, decorate and try out their coffins. Members enjoy being with each other. It is a safe place to talk about their lives and future death. An additional benefit to the Coffin Club is the significant amount of money saved by building their own coffins.

Death Cafes and Therapy

Of the three activities, my clients and I have experienced the Death Cafe. I attended the first Death Cafe held in New Orleans and was amazed by the number of people who came. It was a mixed group, with some being from the medical and mental health fields, while most of the others were from the community. They had heard about the Death Cafe and came to see what it was all about. It was a unique experience.

You don’t usually find people sitting around talking about death. However, it was very encouraging. For over an hour, we introduced ourselves and talked about what had brought us to the meeting. Some came due to curiosity, some due to the loss of a loved one, and some with their own terminal condition. All were interested in discussing and learning more about death. It is good to be able to see that others have the same concerns and fears about dying as we do.

During the meeting, I began to reflect on the people in my practice who might benefit from this experience, and then I thought about Sarah. Sarah was a 74-year-old woman who came into therapy to talk about her declining health. She had been diagnosed with congestive heart failure, which was worsening. She felt that she would not be alive for much longer and wanted to talk about dying.

The problem was that her family did not want to accept her impending death or talk about it — an all-too-common experience. I talked with Sarah about considering attending a Death Cafe meeting. It didn’t take much to convince her.

The following week when she returned, she talked about her experience and how it was like a “breath of fresh air” for her. “People were so welcoming and open,” she said. “It was a relief to be able to talk about dying and not feel guilty. I’m glad I went. I feel like I learned a lot.”

The meeting seemed to empower Sarah. She decided that she wasn’t going to wait around for her family and that she just needed to take charge of all the planning herself so she could have everything just the way she wanted. She began to plan her funeral, the music, and the dress she wanted to be buried in. She picked out her gravesite and even designed her own headstone.

I have also encouraged trainees who were interested in palliative care to have the Death Cafe experience. It has been a great learning tool and helps them to be more comfortable when talking about death with others.

Tulane Medical school has also been in the forefront of utilizing the Death Cafe as a way to address burnout in medical staff who work in high death areas such as the ICU. The meeting I attended included medical staff who worked together on a surgical unit. A child had died in surgery, and the doctor who had performed the surgery was sharing the impact on him as well as the other staff present.

It was very touching to hear him. His pain was almost palpable. Perhaps most striking to me was the atmosphere of the group that allowed him to be open with his feelings of sadness and to cry at the loss of his patient. There are perhaps many different providers who work with the dying that could benefit from debriefing Death Cafes.

Of course, not everyone is enthusiastic about learning more about death. In my practice, I have found that women tend to be more open to the idea than men. There was one situation that has stayed with me for years that demonstrates the power that the fear of death can have: Patricia was brought to therapy by her husband at her doctor’s request. She had been quite ill and recently diagnosed with cancer. Her husband brought her in because the doctor said she was depressed.

It was hard to determine if she was more afraid of her husband, or of dying. One day, she told her husband what we had been talking about. He flew into a rage and would not let her return. It is this fear that speaks to the need for Death Cafes to normalize the process and free people up to talk about what is ahead for all of us.

The Death Cafe has a saying: “talking about babies won’t make you pregnant and talking about death won’t make you die.”

Complete Article ↪HERE↩!

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Surges of activity in the dying human brain could hint at fleeting conscious experiences

— An increase in a certain kind of high-frequency wave in dying brains might be associated with last-minute conscious experiences, but scientists don’t know for sure.

In a new study, researchers recorded comatose patients’ brain activity as they died.

By Stephanie Pappas

In their last minutes of life, some people’s brains generate a surge of surprisingly organized-looking electrical activity that may reflect consciousness — although scientists aren’t entirely sure.

According to new research, published Monday (May 1) in the journal PNAS (opens in new tab), this surge can sometimes occur after a person’s breathing stops but before the brain stops functioning. The activity pattern is somewhat similar to what is seen when people are awake or in dreamlike states, leading to speculation that perhaps these electrical surges reflect the otherworldly experiences reported by people who’ve had close brushes with death: A sense of looking at the body from the outside; a tunnel and white light; or a sense of reliving important memories.

However, since all the patients in the new study ultimately died, it’s impossible to know if they had such experiences.

“If you talk about the dying process, there is very little we know,” said Jimo Borjigin (opens in new tab), a neuroscientist at the University of Michigan Medical School who led the study. It’s rare for patients to have their brains continuously monitored as they die, Borjigin told Live Science. “This is maybe the first study to really show second-by-second how the brain dies.”

Near-death experiences

Some people who are brought back from the brink of death report seeing or hearing unexplained things during resuscitation or when they seem to be unconscious. The reason for these near-death experiences is unknown, and it’s not clear if they’re even specific to death.

International surveys suggest that only about half of what people call “near-death experiences” actually occur in life-threatening situations, said Daniel Kondziella (opens in new tab), a neurologist at the University of Copenhagen who was not involved in the new research. The other half occur during meditation or in scary situations that don’t endanger one’s health or impact the brain’s metabolism, Kondiziella told Live Science.

“The thing is, from the experience itself you cannot say if someone has had a cardiac arrest or syncope [a brief loss of consciousness] or near-miss traffic accident,” Kondiziella said.

Because the people who survive to report a near-death experience are inherently different from the people who die — their brains don’t permanently lose function, for one thing — it’s hard to determine whether those who actually die also have these subjective experiences.

In 2013, Borjigin and her colleagues measured electrical activity in the brains of rats (opens in new tab) that they euthanized via cardiac arrest. They found that for about 30 seconds after the heart stopped, the brain showed a surge in what are called gamma waves, which are the highest-frequency electrical oscillations in the brain. Gamma waves are correlated with conscious experience, but don’t necessarily prove that someone is conscious; they’re just one of many indicators that someone might be aware and alert.

In 2022, a separate group of doctors happened to be monitoring the brain of an 87-year-old man with an electroencephalogram (EEG), which detects electrical activity on the surface of the brain, when the man unexpectedly died. Similar to Borjigin’s rats, the man’s brain showed a surge in gamma activity in the 30 seconds before and after his heart stopped.

‘Reading’ the dying brain

In their new paper, Borjigin and her team made a deliberate effort to use EEG to capture what the brain looks like during death.

The researchers got permission to monitor dying patients in intensive care whose breathing support had been removed after treatment proved futile. The study included four patients total, all of whom were comatose after cardiac arrest.

In the 30 seconds to two minutes after their ventilators were removed, two of the four patients’ brains showed surges in gamma waves. Interestingly, this gamma activity seemed organized, in that the gamma waves in one portion of the brain were associated with predictable activity patterns in other regions.

The temporoparietal junction, a brain region where the temporal and parietal lobes meet, toward the back of the brain behind the ear, was particularly active with gamma waves. This region is known to be activated when people have out-of-body experiences or dreams, Borjigin said.

The new findings echo what was seen in the 87-year-old patient who unexpectedly died, said Raul Vicente (opens in new tab), a neuroscientist and data scientist at the University of Tartu who co-authored the 2022 study but was not involved in Borjigin’s work. “It’s very nice to see a confirmation,” he told Live Science.

“The more consistent findings we have, the more evidence it is that this likely is a mechanism happening at the time of death and if we can pinpoint this down to one location, even better,” said Ajmal Zemmar (opens in new tab), a neurosurgeon at the University of Louisville Health who also co-authored the 2022 study.

Zemmar and Vicente are optimistic that these signals could be signs of conscious experience at the moment of death. But reflecting the debate in the field, Kondziella is more skeptical.

“We know when you die a cardiac death as opposed to a brain death, that takes time,” he said. Minutes pass between the heart stopping and brain cells dying, he said. “It shouldn’t be a big surprise during those minutes, you will see aberrant electrophysiological activity in the brain.”

Some people may experience something like near-death experiences in these moments, Kondziella said, but we may never know for sure. And again, these experiences may not be unique to death — a more likely explanation for near-death experiences that encompasses both life-threatening experiences and non-life-threatening experiences, he said, may be “REM sleep intrusion into wakefulness,” a situation in which the brain blends waking and dreaming states. (REM sleep is marked by dreaming and brain activity patterns that are very similar to waking, including gamma waves and other, lower-frequency waves.)

Borjigin’s team is still collecting end-of-life data, hoping to add to the evidence that the dying brain may generate predictable gamma-wave patterns. Already, other research groups have attempted to use artificial intelligence to identify objects that people saw in their dreams (opens in new tab) based on their brain activity — similar mind-reading may be possible with unconscious and dying patients, Vicente said.

“This opens an opportunity at some point, if we gather enough data, to be able to decode what people in different coma states are thinking,” Vicente said.

Complete Article ↪HERE↩!

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Dealing with death and dying

— How to protect your psychological health

By Bianca Iovino

Aged care staff face a variety of challenges that come with their work and dealing with death, dying and grief is an unfortunate reality of the job.

When frequently dealing with the death of people you are caring for, particularly if you have a strong relationship with them, intense feelings of grief and loss often arise which can be harmful if not dealt with.

Grief is a common response to death. Everyone expresses grief differently and no one can tell another how they should grieve, but it is important to know where to turn to when you are in a state of bereavement and still need to work in the industry.

The Australian Psychological Society acknowledged that aged care workers should be trained to deal with the challenges of their job properly, particularly in areas where trauma or workplace injury may occur, such as the death of a client. But access to psychological services, particularly through your workplace, can be limited as the country faces a shortage of psychology professionals.

Just yesterday, The Medical Journal of Australia released findings that evidence‐based mental health and wellbeing programs are needed for workers in health and aged care organisations to alleviate the ongoing mental health and wellbeing effects of workplace shortages, considerable physical and psychological demands of the job as well as the COVID‐19 pandemic.

As it is in the nature of a carer to do just that – care for others – it is also important for you to care for yourself when you’re feeling weighed down from bereavement.

So what can be done to protect your psychological health?

Heightened exposure to grief in aged care

Exposure to repeated instances of death and grief has been linked to burnout and overwhelming stress in many aged care workers.

Aged care workers are battling staff shortages, increased responsibilities and are still feeling the impacts of the COVID-19 pandemic, increasing the likelihood of experiencing burnout even more.

Grief can also be complicated or prolonged which can be persistent, debilitating and lead to serious psychological distress.

Aged care staff can experience grief more intensely after a resident’s death if:

  • They were particularly close to the person who passed
  • They have limited confidence in caring for people at the end of life, or in talking about death
  • They are facing other stressors, such as heavy workload demands or conflicts and pressures at home
  • COVID-19 can also add to the grief experienced by aged care staff as they are under increased pressure to provide end of life care when family and volunteer visits are limited

Managing grief and bereavement at work

After experiencing death and loss, you may feel the need to start distancing yourself from clients in the name of self-preservation.

You’re not alone. Since the pandemic, many working in the health and aged care field have said they are experiencing compassion burnout – putting the care of vulnerable older Australians at risk. But this strategy probably won’t help you and learning ways to cope with grief can help you build the emotional resilience needed to be the best carer you can be. You can grieve and still care well.

As a first step, it is important for you to acknowledge your feelings of loss and grief. Think about how you are feeling, why you may be feeling it and identify if you think you need to take more steps to help you mitigate these, often intense, feelings.

If you have decided you need more help and support, you can lean on your workplace and fellow colleagues to talk out your feelings and experiences.

Aged care supervisors and staff can support each other by debriefing after a client dies and listening in a non-judgmental way. You may also decide to organise a memorial or attend the client’s funeral if you wish.

Staff should be given time and a private space to debrief after a resident’s death to honour the loss, sign condolence cards for the family and share information about the end of life caring experience. You can ask to know your organisation’s support policy by talking to your supervisor as this should be outlined in an Employee Assistance Program.

Managing grief and bereavement at home

When something happens at work, it’s not easy to simply leave it at the door.

Developing self-awareness is an important step in mitigating the feelings and experiences associated with bereavement and grief. By identifying your strengths and weaknesses as well as understanding why you react the way you do in certain situations, you can better manage your emotions rather than being overwhelmed by them.

If grief and bereavement are becoming unmanageable and starting to impact your home life, maintaining self-care practices is paramount to getting through.

Taking time to rest and relax is key to avoiding burnout and keeping stress levels under wraps.

Where possible, spend time with friends and family so that you have opportunities to talk about your feelings and experiences and also maintain your sense of community support and social connection.

As always recommended, maintaining a healthy diet and exercising in some capacity helps with feelings such as sadness and loss. But you may find you still need a bit more support to help you through.

Seek help by talking to a General Practitioner (GP), a counsellor, a psychologist or other source of professional support.

There are specific bereavement services to help you with grief and loss which may even be available to you through your employer, given the nature of the job.

Dealing with death and dying is no easy feat. We all experience grief loss in our lives but for aged care staff, this reality is constant.

Knowing what to do, where to turn and what supports are available to you when you lose a resident are important pieces of information that can help you grieve healthily while still caring.

Complete Article ↪HERE↩!

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Surviving the Death Talk With My Kid

By

The first time death came up, my son was asking about an old photo of my dog Jupiter. Jupiter, an American bulldog I rescued from L.A. just before my now-husband and I moved in together, died just a couple of months before my son was born. For several weeks I cried, unmoving, on the sofa. Agonizing over my loss and worried that my joy about giving birth was being overshadowed by my sorrow, I was nervous that heartbreak was seeping deep into my bones.

When he asked, I was so excited to tell my son, who was 4 at the time, all about this amazing dog’s life. It turned out he was far more interested in his death.

Like so many other hard conversations we’d had before, I initially tried to be as matter-of-fact about dying as I could be. I described how Jupe had been in a lot of pain, that the doctor said he was likely very ill, and that the kindest thing we could do for him would be to relieve him of that pain as peacefully and quickly as possible. “What was he feeling when he died?” my son asked. I wasn’t sure how to answer. In that awful, quiet moment, I only knew how I felt, and I was shattered. So I told him truthfully that I didn’t know what it feels like to die, but as I’ve done a million times before with things I’m not sure of, I promised we could get some books from the library and try to find out. But I knew deep down he wasn’t interested in hypotheticals and esoteric explanations about death. He wanted to know it, to see it up close and poke at it in the same way he investigated the bugs in our backyard.

The books at the library were unsatisfying, but he didn’t have to wait long to find out what the real thing felt like. The next year for our family was anchored by death, and the “what ifs” were left far behind.

Just a few months after our conversation about Jupiter, my husband’s father died. He flew home to be with his family in the very darkest part of the morning, and I sat up waiting for the sun to rise, hoping the light would help me make sense of what was happening, both for me and for the kids. My daughter was just a toddler, but my son — he was that very curious, very aware 4-year-old who would wonder where Daddy had gone and why.< This time I didn’t feel the need to explain as much; I just let him see for himself how death reshapes the room as my grief filled our tiny home like my tears were a million heavy glass balls. Loss was no longer something atmospheric, it was grounded by this now-empty hole in my husband; it became a window through his heart that he tried to hide but couldn’t. Now that death was suddenly tangible, we started talking about it a lot more, but it wasn’t until my mother-in-law died eight months later that the real, unraveling questions about it came. “Does everybody die?” Yes. “Will you and Daddy die?” Someday, yes. “Will I die?!” Yes, but … “When?” Not for a long time. “Is there anything after we die?” I don’t know.

Those were hard. I wanted to tell him the truth — I think kids are owed at least that much. My husband actually had to stop me from answering “When will I die” with something a little too honest. I just felt he deserved at least my attempt at the full picture of what it means to be alive, of the true price of this incredible experience. That a long life is not promised, it’s only what we hope for, and when and how we die is something no one knows. That death is arbitrary and often meaningless, and how finite our lives really are. Would I be denying him something fundamental by not making all of those things clear? Or was it actually cruel to burst that bubble of innocence for a kid who adamantly believes in Santa and the Easter Bunny? So instead I told him how lucky we are that before we die we get to taste mangos and read our favorite books. That we get to swim in the salty ocean and collect smooth, green glass on the beach.

I worried a lot that first year if I’d been too forthcoming. I didn’t want him to feel burdened by this idea of loss, and I didn’t want him to be afraid. But I also wanted to offer an explanation for why it sometimes felt like the roof of our house was sagging under with grief. I remember when my own dad’s dad died, I was quite a few years older than my son, but my parents shielded my sisters and I from what was happening. All we knew was that suddenly everything felt different around the house and our once stoic dad was felled by a pain we couldn’t understand. I thought and still do think when the emotional tenor of the household changes so dramatically and instantly, it’s important to let everyone know why. Especially since the aftermath of death can feel like a punctuated silence. You’re not sure what to say or how to say it; grief can feel invisible, so naming it, talking about it is a necessary flare to send up, to be clear that this house is in mourning.

I reminded myself of what a privilege it is to watch each other grow and that in the inevitability of death is also a promise to relish life.

Sometimes it felt like he was prodding at us like a couple of worms he’d dug up, seeing which questions would make us recoil or squirm. He often recited that his grandparents had died like it was an animal fact or something he’d learned at school, as a reminder to himself that yes, something had changed this year, we really were different.

>The next summer, my son got really into space. We started talking about all the different galaxies and planets and stars, the bigness of everything around us and the smallness of us. And I told him, a few weeks after the memorial for his grandparents, that he, too, is made of stardust, that part of what’s out there is also in both of us. He loved the idea of being a part of something so huge and the thought that when you died, you might still leave something behind. I knew he’d been seeking that kind of comfort since our very first conversation about it, but I couldn’t promise him something I didn’t know to be true. In stardust though, I was finally able to say with confidence that after we die, we don’t just disappear.

It’s been a couple of years now, and we don’t talk about death as frequently. Some light has come back into our house, and I’ve noticed that my son isn’t as scared of the idea anymore. He understands how momentous death can be, but along the way, because we always answered his questions openly, honestly, and with care, it has become something normal. It’s as much a part of life as anything else, and he’s seen that firsthand now. The only thing that has really changed is that he won’t let me kill bugs in the house anymore because he says they deserve a long life too.

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How to Support Someone with a Terminal Illness

Terminal illness, sometimes called ‘life-limiting illness,’ is a condition or illness which cannot be cured and is likely to lead to death. Death is, of course, a natural part of life. Everyone dies and many (if not most) of us are afraid of it. Our brains don’t do well with the idea of death, in fact, researchers say that our brains shield us from the existential fear around dying.

Yair Dor-Ziderman, a researcher at Israel’s Bar Ilan University, says this: “The brain does not accept that death is related to us. We have this primal mechanism that means when the brain gets information that links self to death, something tells us it’s not reliable, so we shouldn’t believe it. We cannot rationally deny that we will die, but we think of it more as something that happens to other people.”

So what, then, do we do when someone we are close to is diagnosed with a terminal illness or life-limiting condition? How do we face down that existential fear and help? Or cope? Or help them cope?

Advanced cancer, dementia (like Alzheimer’s and others), lung disease, multiple organ failure, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, AIDS, Amyotrophic lateral sclerosis and adult failure to thrive are among conditions and illnesses which can become terminal.

What a person with a terminal illness may be experiencing varies from person to person and from moment to moment. These feelings may come one at a time, in groups or they may cycle and include:

  • Denial
  • Fear
  • Shock
  • Sadness
  • Resentment
  • Anger
  • Relief
  • Acceptance

People’s reaction to the news that they have a terminal illness comes in stages. The way we react to the news that a friend or loved one has received a terminal diagnosis is equally varied. There’s no standard reaction, and there’s no such thing as a right or wrong reaction. Some people feel numb at first, as though what they’re being told doesn’t make sense. Some are immediately frightened, others may initially appear very matter-of-fact.

At the consultation or doctor’s visit, after a person hears that his or her illness cannot be cured, they may be unable to process or retain information that comes afterward. The diagnosis is simply too much to take in. Friends and loved ones may experience the same thing. If you find yourself in the difficult emotional space of helping someone you care about deal with the premature end of their life, look for ways to support the person, their caregivers and yourself.

Some tips:

Don’t assume. For example, don’t automatically count someone with a terminal illness out of gatherings, trips or socializing. Someone with a life-limiting illness is first and foremost a person, with interests and an identity outside of their prognosis. If you aren’t sure whether a loved one would like to get together, invite them and let them decide.

Try not to focus on the illness. While you may feel the need to talk or ask about the person’s illness, it’s a better plan to allow them to determine when and how much to talk about their health. People living with terminal illnesses can feel removed from everyday life, or reduced to only their medical condition. Some may feel that the person they were before diagnosis doesn’t exist anymore, and they may miss the autonomy they had before. When an illness progresses, the person living with it loses control of so much – when to eat, caring for themselves, sleep patterns – so any sense of control you can help them maintain is a very good thing. Even if it’s as simple as when or if to talk about their illness.

Avoid describing the person as ‘dying.’ It’s natural. When someone has been given a terminal diagnosis, ‘dying’ is the word that comes to mind. Remember, though, that to them they are very much still alive, even though their time might be limited. Technically, also, a person is only ‘dying’ at the moment of death. Until then, he or she is living with a life-limiting illness. A fine distinction? Perhaps, but fine distinctions are often the most important distinctions.

Remember caregivers. You really can help someone by supporting their primary caregivers. People caring for seriously ill loved ones need relief. Ask if they need an afternoon or evening off. Hug them if they’re huggers. Make a meal, bring them a coffee.
Rephrase! Don’t say “It’s going to be okay” or ask “How are you?” It’s insensitive to say it’s going to be ok to someone whose fate has been sealed by illness, especially if we don’t know where they are in their processing/mourning process. Instead, ask how they are feeling today. Of course it’s natural to open a conversation with ‘how are you,’ but asking how a person is feeling today helps keep the focus on the moment at hand, and is less overwhelming than asking a big, open-ended question.

Jump in and help. If you tell some to let you know if they need anything, that’s vague. It might even feel meaningless, even if you really want to help because it’s non-specific. Just jump in. Visit often, or call. Ask if you can tidy up the kitchen or take care of some laundry. Ask for a grocery list and mark that chore off the list or mow the yard.

Don’t give up. Someone with a life-limiting illness may not feel well enough for visitors all the time, but don’t try once and then throw in the towel. Living with a terminal illness is difficult and unpredictable. Everyone’s emotional bandwidth is limited – people dealing with end-of-life issues may find that their bandwidth is much narrower or fluctuates more than before. Keep checking in.

Make it a no-phone zone. Sometimes we check our phones without even thinking about it, but if there’s a time to put it away, it’s when you’re spending time with someone whose life has been shortened by disease. Be fully present for them.

Say something. Even if you aren’t sure what to say, something is almost always better than nothing. It could be as simple as ‘I’m thinking of you,’ or ‘I love you.’ You don’t have to directly address the illness or condition, in fact it may be a relief for the person to not talk about it. Speak from a place of kindness and it’s hard to go too far wrong.

Feel what you feel. You may find yourself dealing with anticipatory grief, which is similar to the grief we experience after someone dies. There are differences to be aware of. There is often more anger. You may not know how you feel – holding on and letting go at the same time. Anticipatory grief is a deep sadness which is hard for anyone who hasn’t experienced it to understand. Not everyone will feel anticipatory grief, and it’s neither right nor wrong. Don’t go it alone – talk to someone about your pain. Find a friend who doesn’t judge and speak openly and honestly, making it clear that you don’t need them to fix anything but just to listen.

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