I Asked My Mom if She Was Prepared to Die

— Then I talked to some end-of-life experts. Here’s what I found out.

By By Shaina Feinberg and Julia Rothman

Recently, I had the following conversation with my 82-year-old mother, Mary:

Me: Are you prepared to die?

My mom: Not really. But I am prepared with my paperwork.

You might be wondering why I was asking my mom about her end-of-life preparedness. Well, when my dad, Paul, died suddenly a few years ago, we were completely unprepared.

“Dad and I never talked about what he wanted for his funeral,” my mom said. “He was 74 when he died, and he was in pretty good shape.”

On top of everything she had to do when he died, like planning the funeral, there was also the stress of finances and paperwork. “We had a joint checking account, but it didn’t have a lot of money. Our other bank account had more money, but was only in his name. I had to get that sorted out, which took ages.”

The most helpful advice my mom got when my dad died? “My best friend, Fran, told me, ‘Get a lot of death certificates because you’re going to have to send them to people and sometimes they don’t want a Xerox, they want the real thing.’ I got 15 death certificates from the funeral parlor.”

Preparing to die is complicated. How’s that for an understatement? You have to consider the emotional, spiritual and financial aspects. We talked to three end-of-life experts who unpacked how to make this extensive undertaking slightly more manageable.

According to a survey by Ethos, fewer than half of Americans have discussed their end-of-life plans with loved ones. Yet having these conversations is important, said Sarah Chavez, executive director of the nonprofit the Order of the Good Death, which provides resources to learn about and plan for death.

“These talks can be awkward,” Ms. Chavez said, “but by planning and talking about these things, it’s such a gift for the family that’s left behind.”

While you’re thinking about what to do with your body, you’ll also want to consider what to do with your stuff. “At a baseline, everybody should have a couple documents that are in effect while you’re alive,” said Michael Pevney, an estate planning lawyer with a practice in California. (He also makes videos about estate planning on TikTok.)

No matter what you decide to do with your body or your stuff, you will need someone to carry out your requests.

If you’re unwilling to ask your loved ones about their death preparations, there are other ways to broach the subject. “The easiest way is to open the family photo album and start having conversations about the people in the pictures,” said Joél Simone Maldonado, a funeral director and death educator. “The conversation always turns to what people did or didn’t like about a funeral or grieving process.” Mrs. Maldonado suggests using those conversations as a springboard to ask questions about what people’s end-of-life hopes are. And take notes.

The only upside to being so unprepared for my dad’s death is that now my mom is super prepared. “I have several folders in a cabinet that have all the things you should do when I die,” she said. “I’ve listed you as power of attorney, so you can write a check for the funeral. I’ve paid for my gravesite already. I’ll be next to Dad, under the same gravestone.”

When I asked my mom how she feels looking at the empty side of the gravestone, she said: “There’s my side. I have a place! Oh, and remember,” she added, “I’ve always wanted a mariachi band at my funeral.” Noted.


Complete Article HERE!

How to Make End-of-Life Planning Less Stressful

— One tip: Do it over chocolate cake.

By Jancee Dunn

I recently hosted a strange family gathering: an end-of-life lunch.

It was my sister Dinah’s idea. She had been saying for months that it was time to discuss my parents’ final wishes while they were both still able to weigh in.

But I kept putting off the conversation. Who wants to think about it, whether it’s your own or the death of someone you care about?

Research shows that fewer than one third of U.S. residents have advanced-care directives, or detailed medical instructions in the event they can’t communicate their own wishes. Without such instructions, loved ones are left to use guesswork, which can be confusing and chaotic.

So I pushed past my reluctance and invited the family over to talk about everything from their positions on resuscitation and funeral plans to who will take their cats. I even tried to make things festive by ordering pizza and baking a chocolate cake.

I learned things about my family that I never knew: My mom and dad don’t want a memorial service. (“We don’t like big gatherings, whether we’re alive or dead,” my mom explained.) My sister Heather, meanwhile, wants hers to be held at Starbucks. (A Starbucks rep said that while this was “definitely a unique inquiry that we don’t get across our desks often,” they declined to comment further.)

Our lunch was occasionally weird — my dad once read that your “cremains” can be pressed into a working vinyl record, and he briefly floated the idea — but the gathering wasn’t as sad or awkward as I imagined it would be. Instead, it was a relief to chat openly about my folks’ end-of-life wishes instead of repeatedly stashing them away.

If you’ve been putting off these discussions, here’s how to get started.

Schedule a conversation.

First, ask your relatives if they’d be open to a family meeting — in person or on Zoom — and then set a date.

If you need a conversational starter, Mirnova Ceide, an associate professor of geriatric psychiatry and geriatrics at Albert Einstein College of Medicine, suggested bringing up a news story about dementia. “You can say, ‘This got me thinking about how important it is for us to talk about these issues now,’” she said.

If you are the older relative, consider initiating the family meeting yourself, Alua Arthur, an end-of-life doula and the author of the upcoming book “Briefly Perfectly Human,” suggested.

It might feel uncomfortable to broach the subject, she explained, but you can think of getting your affairs in order as a posthumous gift to your family.

You are sparing them a scenario “where they are in the midst of tremendous grief, and then they’re also trying to figure out what to do with all your stuff and where to find your passwords and everything else,” Arthur said.

Prepare a checklist.

Create a document that the whole family can access, and assemble a checklist of topics and prompts to go over, Dr. Ceide said. A good source for questions, she said, is the end-of-life guidelines from the National Institute on Aging.

The two vital things to discuss in the initial meeting, Dr. Ceide said, are who will serve as a health care proxy, acting as your stand-in for health care decisions, and what directives should be in your living will.

“We cannot exert control over the timing and nature of our death,” Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, added. “You cannot anticipate exactly what the circumstances will be. So the most important thing to do is to identify someone you trust to speak for you if you are unable to speak for yourself when decisions need to be made.”

The institute also has a list of ways to create advance directives for little or no cost. (And Medicare covers advance care planning as part of your yearly wellness visit.)

Once you decide on your health care proxy and draft a living will, you can make it official by completing a durable power of attorney for health care, a legal document that names your health care proxy. Then distribute copies to your doctor, loved ones and, if you have one, a lawyer. (A lawyer is helpful but not required, according to the institute.)

Get reflective.

Our family had a long talk about how my parents wanted to spend their remaining years. Arthur, the doula, suggested asking: What is still undone in your life? “Because that helps you figure out where you want to place your time and energy,” she said.

We went over the things our parents still wanted to do, and how we could make them happen. My parents said they hoped to travel locally a bit more. My dad wants to attend his 65th high school reunion in Michigan (“at my age, they do it every five years”). Dinah, my sister, said she would accompany him.

Another helpful resource is the Stanford Letter Project, a free website that offers tools and templates for writing a “last letter,” a personal message of gratitude, forgiveness or regret to share with the people you love.

Consider regular check-ins.

End-of-life care is likely too big a topic to resolve in one meeting, Dr. Ceide said. She encourages families to have a regular conference call to check in.

Doing this can help you get on the same page so you’re all aware of, and planning for, issues like getting a ramp for your parents’ house, Dr. Ceide explained. You’re able to address “little things as they come so that when the bigger issues happen, you already have an infrastructure and a comfort with communicating together about these things.”

After our meeting, my father asked me to pack up a piece of chocolate cake to take home. “After all this death talk, I should probably seize the day,” he said.

Complete Article HERE!

Why You Should Consider a Death Doula

— End-of-life doulas are compassionate and knowledgeable guides who can walk with you through death and grief.

By Anna Lee Beyer

We’re all going to die, and before that, we will probably navigate the deaths of several people we love along the way.

Too dark? Discomfort with the idea of death may be the reason that people rarely talk about it, plan for it, or teach each other how to cope with it.

“Many people in our society are death phobic and do not want to talk about it,” said Marady Duran, a social worker, doula, and educator with the International End-of-Life Doula Association. “Being an end-of-life doula has been so much more than just my bedside experiences. I am able to talk with friends, family, and strangers about death and what scares them or what plans they have. Being a doula is also about educating our communities that there are many options for how end-of-life decisions can be made.”

When you or a loved one inevitably faces death, there can be an overwhelming feeling of What do I do now? What do I do with these feelings… and all this paperwork? End-of-life doulas (also called death doulas or death coaches) are compassionate and knowledgeable guides who can walk with you through death and grief.

The experience of supporting a childhood friend through her death at the age of 27 motivated Ashley Johnson, president of the National End-of-life Doula Alliance, to commit herself to this role.

“Walking alongside her during her journey, I recognized the tremendous need for education, service, and companionship for individuals and their families facing end-of-life challenges,” Johnson said. “The passing of my dear friend only solidified my commitment to this path. I saw it as my calling to extend the same level of care and support to others who were navigating the complexities of end-of-life experiences. I firmly believe that every individual deserves the dignity of a well-supported end-of-life journey, and that starts with demystifying the process, reducing fear, and helping families achieve the proper closure they need to heal.”

What to expect from a death doula

The services provided by an end-of-life doula are actually pretty varied and flexible. Much like birth doulas, they do not provide any medical care. These are some of the services Johnson said she provides in her work:

  • Advance health care planning. This might include a living will, setting up durable power of attorney for health care, and advance directive decisions. “We help individuals and their families navigate the complex process of advance healthcare planning, ensuring their wishes and choices are respected and documented,” Johnson said.
  • Practical training for family caregivers. End-of-life doulas can teach caretakers and family members how to physically care for their loved ones as they near death.
  • Companionship to patients. “We provide emotional support and companionship to patients, helping to ease their feelings of isolation and anxiety,” Johnson said.
  • Relief for family caregivers. Caring for a dying family member can be relentless, but caregivers need time to step away and care for themselves too.
  • Creating a plan for support at the patient’s time of death. A person nearing the end of their life may be comforted by many things in their environment, from the lighting, music, aromatherapy, and who’s present. A doula can help coordinate all the details.
  • Grief support. “Our role extends into the grieving process, offering support to both the dying person’s loved ones and the patient during the end-of-life journey and beyond,” Johnson said.
  • Vigil presence for actively dying patients. “We ensure that no one faces the end of life alone by being a comforting and compassionate presence during the active dying process,”Johnson said.
  • Help with planning funeral and memorial services. Planning services is a complicated task to tackle while you are likely exhausted with grief. Doulas have been through this process many times and can be a steady hand while you make decisions.

“Our aim as death doulas is to enhance the quality of life and death for all involved,” Johnson said. “We provide a range of non-medical support, fostering an environment where individuals and their loved ones can find comfort, guidance, and a sense of peace during this profound and delicate phase of life.”

When is it time to bring in a doula?

Death doulas can provide comfort and support to both the dying person and their loved ones at any stage of the process. They can step in to help before, during, or after a death.

  • At any time, before you even receive a terminal diagnosis, doulas can help you prepare emotionally and practically with planning for end-of-life wishes, advance care planning, and creating a supportive environment.
  • During the end-of-life phase, doulas are more present to offer emotional, spiritual and practical support. They may be available weekly or daily, as needed.
  • After death, doula services continue for the family of the deceased.

“There really is no timeline for grief,” Duran said. “Some will want to meet one or two times after the death, and some do not want to do grief work at all. It is a personal journey, and some people may take years to do the work.”

Support for an unexpected death

Not all deaths come with an advanced warning or time to prepare and plan. Even in the case of an unexpected death, an end-of-life doula can help you handle practical details and process grief. They can:

  • Provide emotional support
  • Help you understand the grief process
  • Teach you coping strategies
  • Help with arrangements, legal, and financial matters
  • Help you create meaningful memorial rituals to honor the deceased
  • Provide connection and community
  • Listen and validate your feelings
  • Provide long-term support

“My mentor Ocean Phillips, who is also a doula, always reminds me that ‘grief is another form of love,’” Duran said. “Grief gets a bad rap, and many people do not want to feel grief, but it can be transformative for many who experience it. People who go through an unexpected death of a loved one may feel guilt—‘If only I…I could have…’ The doula can hold space for them and allow them to share that. We can never fix or change, but we can stand with them and provide loving kindness along the way.”

Other professionals to help you navigate a death

Death doulas work in conjunction with many other professionals, including healthcare workers and hospice staff, to help families go through the process of death and all that follows.

“The whole team has a piece in being able to connect with those navigating grief and death. I always recognize that I am just one small part of the larger community that will help support those facing death and loss,” Duran said.

These are a few other professionals you might want to reach out to when facing the death of a loved one:

Complete Article HERE!

Message From A Death Doula

— Everyone Needs A Death Plan (Not Just A Will)

By Hannah Frye

Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.

But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.

Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.

What is an end-of-life plan?

Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:

  • Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to. 
  • Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet. 
  • Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well. 
  • Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.

Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you. 

If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.

Why are end-of-life plans important?

For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:

1. Too often, we see death as “a failure”

Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.

Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.

But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.

2. Speaking about it can help with death-related anxiety

On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.

Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.

3. A plan can help support your loved ones when the time comes

Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.

Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).

4. Acknowledging death can make you more present

Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.

Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.

Death keeps us awake to our lives

Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.

5. Don’t be afraid to ask for help

If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.

The takeaway

Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.

Complete Article HERE!

How to Plan for the End of Life With Cancer

— Reflect on your wishes ahead of time to help ensure they will be followed.

By Susan Kreimer

No one can predict exactly how long you will live with cancer, whether you have metastatic stage 4 disease (cancer that has spread to distant organs) or a less advanced stage. No matter where you are in your cancer treatment, end-of-life planning can ease some of the burden on you and your loved ones. If you take time now to reflect on your wishes, you can increase the chances you’ll achieve the outcomes you want.

Soon after any cancer diagnosis is a good time to consider end-of-life planning. Your doctor can answer questions about your prognosis, including what the realistic options are and what those treatments can achieve, says Steven Pantilat, MD, the chief of the division of palliative medicine at the University of California in San Francisco.

Laura Shoemaker, DO, the chair of palliative and supportive care at Cleveland Clinic, adds, “Care planning, ideally, is about planning for the entire trajectory of the illness, including but not limited to end of life.”

This can be done at any time and should be tailored to your needs.

Reflect on Your Values, Priorities, and Wishes

This reflection process can be difficult to initiate, but will be well worth it. It should include talking with your family, caretakers, or even a counselor.

“Each person’s plan will be a reflection of their lives, values, and personal priorities,” says Kate Mahan, LCSW, an oncology social work counselor in the Canopy Cancer Survivorship Center at Memorial Hermann the Woodlands Medical Center in Houston.

“It is often helpful to think of this as a series of discussions instead of a single talk,” she adds. “While we all know that no one lives forever, it is often very challenging to consider our own mortality.”

End-of-life planning allows your healthcare team to understand what matters most to you, says Mohana Karlekar, MD, the section chief of palliative care at Vanderbilt University Medical Center in Nashville, Tennessee.

It’s important to think about expressing your end-of-life wishes in writing if your cancer has progressed, or you’re experiencing more complications from your treatments.

This may be the time to ask yourself where you would prefer to spend your final days — for instance, at home or in a hospice house, says Eric Redard, a chaplain and the director of supportive care at High Pointe House, part of the Tufts Medicine Care at Home network, in Haverhill, Massachusetts.

Do you want to accomplish anything special? Is there a meaningful place for you to visit while you’re still mobile? “The list is endless,” says Redard.

Appoint a Decision-Maker

By communicating openly with your healthcare team, you can make more informed choices about the medical care you want if the time comes when doctors and family members have to make decisions on your behalf.

One of the most important end-of-life decisions for any person with a cancer diagnosis involves selecting someone who will be a voice for you when you can’t speak for yourself.

“Ask yourself, who would I want to make decisions for me? Anyone with cancer could — and should — do that,” says Dr. Pantilat.

Your choice can be enforced through a durable power of attorney for healthcare. It’s a type of advance directive, sometimes called a “living will.” This document names your healthcare proxy, the person who will make health-related decisions for you if you can’t communicate them to your providers.

Write Advance Directives

Outline your wishes in advance directives. The following are decisions you may want to consider including in these documents, says Redard. 

  • Tube feeding Nutrients and fluids are provided through an IV or via a tube in the stomach. You can choose if, when, and for how long you would like to be nourished this way.
  • Pain management It’s helpful for advance directives to include how you want the healthcare team to manage your pain. You can request as much pain-numbing medicine as possible, even if it makes you fall asleep, or just enough to reduce pain while allowing you to remain aware of the people around you.
  • Resuscitation and intubation You may decide that a do-not-resuscitate (DNR) order is right for you. This is a medical order written by a doctor that informs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops beating. Similarly, a do-not-intubate (DNI) order tells the healthcare team that you don’t want to be put on a ventilator if your breathing stops.
  • Organ and tissue donations You may want to specify that you want to donate your organs, tissues, or both for transplantation. You may be kept on life-sustaining treatment temporarily while they’re removed for donation. To avoid any confusion, consider stating in your advance directive that you are aware of the need for this temporary intervention.
  • Visitors You may wish to make it known in advance who will be able to see you and when. This may include a visit from a religious leader. For some people, such a visit can provide a sense of peace.

Even if you write advance directives, it’s a good idea to discuss them with everyone involved in your care. “There is no substitute for meaningful conversations with loved ones and medical providers about one’s care goals and preferences,” says Dr. Shoemaker.

The advance directives can also specify if you would like to receive palliative care.

Choose Palliative Care

“Palliative care provides symptom control and supportive care along the entire disease continuum, from diagnosis of advanced cancer until the end of life,” says David Hui, MD, the director of supportive and palliative care research at MD Anderson Cancer Center in Houston.

It treats a range of symptoms and stress issues such as pain, fatigue, anxiety, depression, nausea, loss of appetite, and nutrition. 

“We generally advise that patients with advanced cancer gain access to specialist palliative care in a timely manner to help them with their symptom management, quality of life, and decision-making early in the illness trajectory,” says Dr. Hui.

The goal of this approach is to provide an extra layer of support not only for the patient but for loved ones as well, especially family caregivers, according to the Center to Advance Palliative Care. It is appropriate at any age and at any stage of a serious illness, and you can receive it along with curative treatment.

Consider Hospice Care

Hospice care is one branch of palliative care. It delivers medical care for people who are expected to live for six months or less, according to the Hospice Foundation of America.

You may decide to consider hospice when there is a major decline in your physical or mental status, or both, despite medical treatment. Symptoms may include increased pain, significant weight loss, extreme fatigue, shortness of breath, or weakness.

Hospice can help you live with greater comfort if you decide to stop aggressive treatments that may have weakened you physically without curing your cancer or preventing it from spreading. Hospice care does not provide curative therapies or medical intervention that is intended to extend life.

A hospice care team often includes professionals from different disciplines, such as a doctor, nurse, social worker, chaplain, and home health aide. This team can guide you in managing your physical, psychosocial, and spiritual needs. They also support family members and other close unpaid caregivers.

Find Comfort at the End of Life

Finally, remember that end-of-life planning isn’t solely about medical care. It’s also a time when you will need emotional support. So, consider mending broken relationships, surrounding yourself with pictures of family and friends, and playing music that soothes your soul.

“People can write letters to loved ones, forgiving them or reconciling,” Redard says.

End-of-life planning is a topic people tend to shy away from, but it removes the burden from those left behind. “Once it’s over,” says Redard, “there’s relief.”

Complete Article HERE!

Breaking the ‘Widow Rules’

— I’ve lost two wives and I know there can be a better end-of-life experience and a better grieving process

By Jill Johnson-Young

When I tell my “how I got here” story, the usual responses are sad looks and a weird sigh that most seem to think fits responding to loss. You know that experience, especially if your partner has died. It’s one the grievers I work with learn to loathe.

It’s confusing when you smile in response. You are supposed to be sad, perhaps a bit hopeless, and, very possibly, needy. You have a role to play. And while we may be sad at times, we need to smile and feel capable just like everyone else.

Actors in the movie Steel Magnolias in a funeral scene. Next Avenue
Like the cemetery scene in the movie ‘Steel Magnolias,’ research shows that families experiencing terminal illness need humor in those around them.

You can insist that you are treated as a couple, not a caregiver and patient.

After the losses I’ve experienced on the ‘bingo card’ of life, my take on how to do illness, dying and grief is a bit different.

Working in hospice as a social worker and administrator added to that shift, and quite possibly to my sense of humor in talking about it. Hospice staff have a bit of a twisted sense of humor simply to survive, but we don’t take it out to share in public. We should. Research shows that families experiencing terminal illness need humor in those around them. Remember the cemetery scene in the movie “Steel Magnolias?”

A Need to Take Control

They also need a sense of control. Dying is not like the movies; it takes work, but there can be some magic in the end. It needs to be actively managed, not something that takes control of your life: the couple should make the decisions, with education, great hospice care and setting boundaries to preserve their roles.

You can insist that you are treated as a couple, not a caregiver and patient. You should be allowed to use your anticipatory grief together to finish your relationship, and to say goodbye in a way that works for you.

Terminal illness can be sneaky. You cope with the disease process and adapt, over and over. And suddenly that ongoing disease is now going to be terminal.

My first wife, Linda, survived metastatic breast cancer — but died of pulmonary fibrosis a decade later from chemo. My second wife, Casper, (yes, she was named after a friendly ghost) died of Lewy Body Dementia. Think Robin Williams, but not the funny part. That started with a weird assortment of symptoms that were repeatedly misdiagnosed. Her final diagnosis was months before she died, and only after I asked if that was what we were dealing with.

It was managing their illnesses and symptoms that allowed control over some of the craziness that is today’s medical system. (That, and being an outspoken wife who is also a social worker, much to their dismay at times.) I am not alone in that experience.

Steps to Take to Manage a Loved One’s Illness

So how do we manage facing ongoing illnesses that have the potential for becoming life shortening?

  • Document! I know, it takes time, and it feels unending. It’s hard to look at the words. Do it anyway. What are the symptoms throughout the day? What level is the pain? What works? What doesn’t? Who have you talked to? What have you been told? Take a medical notebook with you to every appointment.
  • Write a summary for doctor’s visits. Use bullet points for easy reading. Write down what you need from the visit. Expect care that meets your needs and follow-up.
  • Find an online community of caregivers/patients. They get it, where others will not. And they share survival humor.
  • Get your advanced directives done. Get paperwork in order: A POLST (Physician’s Order Regarding Life Sustaining Treatment), trust or will, caregiving plan, end of life plan, memorial plans. Consider hiring a private end of life doula. There are some great books out now (“I’m Dead, Now What?” is popular). The National Funeral Directors Association has some helpful resources about having hard conversations. Unfinished plans and paperwork make things harder, and take away your control when others step in to do them for you.

What happens when the illness gets worse? It would be nice if doctors would tell us that our loved one is now considered terminally ill, but the reality is many will not. Many physicians do not tell families or patients when an illness is no longer treatable. Some will mention palliative care to open the conversation, but won’t say hospice.

The National Hospice and Palliative Care Organization offers information about hospice care; hospice can extend life because a good care team reduces stress, and the support provided allows the patient and family to use their energy on quality of life, not battling insurance companies, pharmacies and unrealistic expectations of one another.

Complete Article HERE!

Having Essential Conversations About Death

— If your wishes remain unspoken, you will leave your loved ones in a quagmire of confusion

“So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself.”

By Jill Smolowe

Since our first encounter on a cyber dating site in 2010, my husband and I have had a fluid conversation about death. That includes what we expect from the other should we find ourself hospitalized. Or facing a debilitating condition. Or trapped in a twilight between life and death. In other words, we discuss what we’re willing to endure. And what we are not.

Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

If that sounds odd or creepy, it may help to know that Bob and I met after each of us lost beloved spouses and longstanding marriages to cancer. From the get-go, caregiving, illness and death were front and center in our lives. Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

In 2023, our conversation intensified as we experienced two more losses. I appreciated that I could tell Bob that I was relieved that my older brother went quickly after a massive stroke last January that his doctors said would leave Alan’s physical and mental capacities severely impaired. I didn’t want to lose my brother. But even more, I didn’t want Alan to have to slog through years of a life that he would not have wanted.

Death and Illness Part of Our Lives

I knew this because Alan and I had discussed end-of-life wishes many times over the decades. He frequently quoted my parents, who liked to say, “Life is a day in the classroom.” Alan had lived, Alan had learned. After the stroke, I had no doubt that Alan wanted the bell to ring signaling class was over.

Far harder was the seven-month approach to death that my stepson endured before he closed his eyes for the last time in June. Just 41, Adam was determined to try anything and everything to overcome pancreatic cancer. It was upsetting to watch 150 pounds drop off his body because he couldn’t eat. It was horrifying to watch Adam become confined to bed because the cancer deprived him of the use of his legs. It was devastating to watch Adam shift from an autonomous adult to one fully dependent on others.

But all of that paled beside the physical pain Adam endured minute after minute, day after day, month after month. Neither opioids nor fentanyl could quiet his writhing agony. And there wasn’t a damn thing Bob or I could do to ease his pain.

But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost.

At night after Adam would go to bed, groaning up the stairs of our condo to lie awake moaning all night, Bob and I would say to each other, “I don’t know how he puts up with this.” We were clear that the literally gut-wrenching treatments were Adam’s choice, and a choice we would honor. We were clear that he was decades younger than either of us and had good reason to fight. But as we made clear to each other night after night, this was a choice neither Bob, at 74, nor I, at 68, would make.

After delving into the requirements surrounding the Medical Aid in Dying measure in our home state of New Jersey, Bob and I told each other that were we in Adam’s situation, we would want out. Where Adam refused to let the words “palliative care” and “hospice” into his hospital room until his very last days, we told each other that we regarded both as blessings, not curse words.

Bob and I do not share a belief about what comes next. But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost. So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself. Both us know that there are situations where we would regard death as the kinder option.

Because we have had front row seats to so much death and dying, we also know that people’s death wishes shift with circumstance. There can be little clarity if end-of-life wishes are shoved aside for a last-minute chat. Instead, we believe that death considerations need to be part of an ongoing discussion — one that needs to be shared not only between us, but with our children, as well.

Sometimes I forget that other people do not share our comfort level with such talk. A few weeks ago, Bob and I dined with a couple, good friends both, who between them have four parents in their nineties. After they laid out the difficult health issues and hard choices they were confronting, I asked if their parents wanted to continue living.

Talking About Death

Their expressions registered surprise at the question. Their answers conveyed more speculation than certainty. Neither seemed to know even if their parents feared or welcomed death at this advanced stage in their lives. Breezily (okay, too breezily), I shared some thoughts about dying, and then we parted.

Nine days later, I got a text from the wife, asking if she could stop by. Waving off my offer of coffee, she got right down to business. “You said some things the other night that scared me,” she said. “I’m worried about you.”

As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents.

I blinked, trying to recall our dinner conversation. “Oh,” I said, “you mean the stuff about death?”

She nodded, her expression grim.

“I’m not suicidal, if that’s what you’re thinking,” I said.

Her expression relaxed a notch.

I reminded my friend that Bob and I had met because we’d each lost our spouses. I assured her that death was a natural part of our discussion. I reminded her that I’m a grief coach. That death comes up a lot in those conversations, too. Then, I apologized — sincerely — for having scared her. “You’re a good friend,” I said.

I felt deeply touched that my friend had cared enough to reach out to me. It’s not easy to open a conversation with someone you fear may be wrestling with mental health issues. To broach the subject had been not only caring, but brave.

After I laid her concerns to rest, our conversation segued into my friend’s feelings of helplessness and confusion about her parents’ care. As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents. As a result, she was struggling to figure out what she thought was best for her parents— while not knowing what they thought was best for themselves.

“Have you considered looking into palliative care?” I asked.

“What’s that?” she replied.

Stunned by her response, my feeling of contrition evaporated in a gust of gratitude. Gratitude that Bob and I are able to discuss these difficult issues, not only between ourselves, but with our children. Gratitude that we know and understand each other’s wishes. Gratitude that we will not leave our children to have to make difficult choices we were unable or unwilling to make for ourselves.

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