People may not fear death, but they dread the process of dying

By Barney Zwartz

Native Americans, I read recently, have a rather beautiful concept called “second death”. The first death is when breath finally leaves the body; the second is when someone says your name for the last time.

This is not entirely dissimilar from the notion at secular Australian funerals of “celebrating” a life. Stories, humour, sorrow and love honour the lamented lost, and help cement them in our memories – they too live on, in a sense, while they are remembered.

In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.
In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.

What surprises me is how often non-believers make remarks like “she’s in a better place now” or “he’ll be looking down from above” – a paradoxical cultural legacy from the Christian belief in heaven.

Yet perhaps it is not really surprising. After all, belief in an afterlife is near universal across cultures from the earliest times, as evidenced by prehistoric grave sites – it’s utterly fundamental, which is a form of evidence.

Non-believers tend to reject the idea of an afterlife as mere wish fulfilment, but their rejection could equally be understood the same way, for example, as a reluctance to admit the possibility of judgment. (This is the thought of the Christian version of the “second death”, described in the New Testament book of Revelation.)

The atheist understanding, like the Christian’s, is entirely a matter of faith – no categorical evidence exists either way, though Christians can point to the biblical accounts of the post-resurrection appearances of Jesus.

Melbourne oncologist and writer Ranjana Srivastava, in her compassionate and thoughtful book A Better Death, notes how unprepared so many people are to die who have never thought about mortality and cannot accept it – even people in their 90s.

Having supported so many people of various ages and circumstances as cancer takes their life, she writes that many suffer a sort of existential pain – denial, absence of meaning, recrimination, regret – that can be as hard to bear as the physical aspects.

The urgent thing, she says, is to reflect before we age. “Dying well is about treating ourselves and others in the last act of life with grace and goodwill,” and there can be many moments of happiness, fulfilment and discovery that give meaning to life.

Death is today’s great taboo. People may not fear death, but they dread the process of dying. As Woody Allen quipped, he’s not afraid of dying, he just doesn’t want to be there when it happens.

These days, it seems, we all want to die painlessly in our sleep, preferably unexpectedly with no suffering beforehand. This is a stark contrast to previous centuries, when people wanted time to settle their affairs, take their leave of loved ones and, in particular, prepare to meet their maker.

Perhaps that’s a better death, both for the dying and for those they leave behind.

Complete Article HERE!

Hospice Nurse Hadley Vlahos Has Seen Incredible Things from People Facing Death That Defy Medical Explanation.

— Here’s What It’s Taught Her About Life

By Stacey Lindsay

In her bestselling book The In-Between: Unforgettable Encounters during Life’s Final Moments, hospice nurse Hadley Vlahos writes the truth she sees in her job working with dying patients. “The one thing I can tell you for certain is that there are things that defy medical explanation and that in between here and whatever comes next, there is something powerful and peaceful.”

Alas, Vlahos still knows that “in between” and death are tricky topics. Death anxiety is real, she tells The Sunday Paper. But it is this angst that she hopes to dispel, both with her honest posts on social media (Vlahos has over 2 million followers on TikTok and Instagram combined) and in her book, in which she writes about all she’s witnessed and gained. As she says in a video post, “I found life again from caring for dying patients.”

Books on what those who are dying can teach us abound, and they share beautiful similarities in how we must grab the time we have and learn to embrace the beauty of passing on. Yet The In-Between is a book only Vlahos could write. In her captivating narrative, she layers between her accounts of people going to the other side, her own journey of facing poverty as a single mom, taking a chance in becoming a hospice nurse, and finding a Technicolor purpose—perhaps even more remarkable than she ever could have imagined.

A CONVERSATION WITH HADLEY VLAHOS
You write that people ask you about the subject of death often. What does this curiosity say to you?

I’ve been a hospice nurse for seven years now. And in the beginning, it was very hush, hush. You don’t talk about it. And I’ve noticed a huge cultural shift over the last two to three years since COVID, where people want to know. People realized how in the dark they were about what was going on, and they became hungry for knowledge. And it’s wonderful. Whenever you’re educated about something, it reduces the fear around it. I think everyone has that little bit of death anxiety, of course. Whenever we open up and talk about it, it makes it better.

You share these bone-chillingly incredible stories about things that happen to people as they are dying in hospice that, as you say, “defy medical explanation.” Many people connected with loved ones; in one story, Miss Glenda started talking to her deceased sister in the time leading up to her death. Tell us more about what you see.

We don’t learn in nursing school about people seeing deceased loved ones. So, whenever it first started happening, I thought it was a hallucination. Because that’s what I learned: People take medications, and then they hallucinate. And then I started talking to all my hospice coworkers and physicians, and I realized that they don’t believe that it is hallucinations. My first thought was maybe they’re all religious. But then I started being the one in control of my patients’ medication; I was the one who knew what they were taking and not taking. I would see the correlation between no change in medications, some patients not taking medications at all, and people with completely different religious backgrounds and diagnoses, and they were all having the exact same experience of their deceased loved ones coming to get them at the end. I started looking into it, wondering why this was happening and we don’t know why. There is no explanation as to why this happens and it is incredibly interesting to me.

There are a few different ones that happen. There is the seeing of deceased loved ones. There is also something called terminal lucidity, which is where people with dementia and Alzheimer’s will suddenly gain their memories at the end and be able to have conversations. I don’t witness it too much, but it is unbelievable to witness, and we don’t know why that happens either. The other one is what we call a surge of energy. That is where people at the end who have maybe been bed-bound for a while or have not been eating or talking much will suddenly be like, ‘I want to go into the living room and eat my ice cream and chat with my family.’ We don’t know why it happens, but it can sometimes give people a false sense of hope. And that is hard because loved ones will call me and say, ‘They’re doing so much better. I don’t even know if they need to be on hospice,’ when in reality, it usually means that they’re going to die very soon.

Going back to what we were talking about, whenever we educate people, they then know, oh, this could mean that my time is limited, and I need to enjoy this moment and take advantage of it.

This all sheds light on how we may force things on our loved ones who are dying, perhaps food or water, for instance, when they no longer need it. It is well-intentioned, but it speaks to a need for more understanding. What do you wish people who have a loved one who is dying knew?

I wish people knew that patients know that they’re dying. A lot of times, I watch this dance where someone is on hospice, or they’ve had terminal cancer for years, and no one wants to talk about it. Everyone wants to pretend that it’s not happening. What they think they’re doing is they are being kind by not saying, ‘I know you’re going to die one day,’ and not bringing up a difficult topic of conversation. But in reality, what I see with a lot of patients who confide in me is that they feel alone. They have all of these big feelings and thoughts and feel like they can’t talk to anyone about it because people change the subject. So I always tell family members, if your loved one brings it up, please talk to them and don’t try to change the subject. I know it’s uncomfortable. I know that the family members are trying to do the best thing, and they think they’re doing the right thing, but sometimes it leaves patients feeling alone.

You worked as a nurse in a traditional hospital setting before transitioning to hospice. How you speak of the hospice community paints a picture that it’s holistic and more harmonious. What things from the hospice world do you wish could be imbued in the medical world?

I have been what is called a case manager. If you’re in hospice, you have a registered nurse case manager. That means that I had patients assigned to me that were my responsibility. So, if a physician wanted something, the doctor had to come through me. If the chaplain wanted something, he had to come through me. If anyone wanted anything, they would have to come through me. I know not only what medications my patients take but also what prayers they’re saying with the chaplain and what conversations they’re having with the social workers. That kept things very cohesive.

A lot of patients tell me, and I’ve seen this from my own experiences, that it can feel like your cardiologist is telling you to do one thing and another doctor is telling you to do the opposite. No one in there’s saying ‘Okay, the cardiologist said this, let me call them.” Because so often, patients don’t know how to have the medical conversations that need to be had. There needs to be that one person. Right now, the only case managers we have in the hospital-type setting work for insurance companies, and that can be a gray area, as they’re usually on the phone and not caring for the patient and laying hands on the patient. So, I think other areas of medicine could learn from that approach, making it holistic.

You’ve said many times how positive of an experience death has been for so many of your patients. What can that teach us about life?

It can really teach us how to live a good life. Truly. I think that whenever we recognize that our life is short, and that’s such a cliche statement, but whenever we realize that, Okay, one day, I’m going to be on my deathbed. I see my patients, and I think, ‘That’s going to be me one day.’ So am I doing what I want to do every day so that when I’m in this position one day, I don’t have regrets? Or I can look back and do my life review with my own nurse and be like, ‘Yeah, I really went for it. Maybe I failed a little bit, but I really went for it. I really lived life.’ I think that that’s a really beautiful thing to be able to do.

When it comes to life wisdom, regrets, and looking back, what are some things you’ve heard from people as they pass on?

They tell me a lot! ‘Eat the cake,’ which I put in my book, is one of my favorites. I think about it all the time. But one thing that people have told me a lot, which I surmised from all of them, is that they lived for other people instead of themselves. That can mean a bunch of different things. That could be buying a new car because the person on the street has a new car. That could be choosing a career because that’s what your parents or society expected of you. Those are the regrets I’ll hear: They wish they would have just lived for themselves instead of others. Whenever I first heard ‘Don’t try to keep up with the Joneses,’ as someone said to me, I first thought the best way to live is to have no possessions and live a very low-key lifestyle. But as I started talking to more people, I realized it was more about: If you buy this house, is it because you love the house and you love coming home to this house every day? Does it make you happy? Or if you’re really into cars, does that car bring you joy? So I’ve realized that ‘Keeping Up with the Joneses’ means buying stuff for other people, not yourself.

What is the “in-between”?

It has a few different meanings. The main one is that I feel I’m with patients in between this world and whatever comes next. We get that little window of patients between worlds, and they seem to go back and forth. It’s my favorite period of time. I love being part of it.

On a more personal life side, the in-between for me was getting comfortable in the uncomfortable and being able to say, ‘Maybe I don’t have the answers, or maybe my life isn’t exactly how I want it to be, but I’m still finding happiness in this in-between phase.

Your book has been wildly successful. What did you hope people would take away as you wrote it? And what has surprised you now that it’s in so many people’s hands and ears?

I hoped that people would have less death anxiety. Whenever we turn on the TV, we see this tragedy—all the time. There was just a study that came out about how 80 percent of what we’re shown is just traumatic deaths. And I’m aware that that is not the reality for the majority of people. So, I was hoping that people would understand that you’re likely going to die in a slower way. And I think that that helps with people’s death anxiety. That was always my goal.

I was very shocked just how much people loved it. And I was very shocked at how much people related to me on a personal level. I was nervous. I quite literally wrote whatever my thought was. I put myself back in that moment in time, and whatever my thought was, whatever I was thinking, I just wrote. It was extremely honest, and I was a little bit nervous about it. I have been shocked by the messages, handwritten letters, and people just saying, ‘Thank you. I’m really glad to see someone else go through these things.’

And then how many ‘Eat the Cake’ tattoos! I think I’m up to 17 tattoos that I’ve seen. I love them so much!

Hadley Vlahos is a registered nurse specializing in hospice and pallative care. She is known as “Nurse Hadley” to her over two million followers online. Her first book, The In-Between: Unforgettable Encounters During Life’s Final Moments, is a New York Times bestseller. Learn more at nursehadley.com.

Complete Article HERE!

Does Someone Know When They’re About To Die?

By Jennifer Anandanayagam

Death is an uncomfortable topic for most of us but it is also one of the few universal experiences everyone will have. Scientists and doctors have long been investigating what happens to someone as they slowly slip away from this world, and while we don’t have all the answers, there are a few physical and behavioral changes you might be able to observe in someone who’s dying.

The person’s level of activity and movements might decrease significantly, noted the Hospice Foundation of America. They might spend most of their time sleeping. You might also observe that they’ve detached from what’s going on around them — interests, conversations, etc. They may also experience a loss of appetite and mental confusion. Physically speaking, someone who’s dying will experience a slowing down of their breathing and a drop in their blood pressure, per Everyday Health. “The fingers may get cold or turn blue. If you feel the pulse, it will be weak, then they start to develop an irregular type of breathing, and that’s a sign that things are pretty ominous,” added the medical director of the Hebrew Home at Riverdale in New York, Dr. Zachary Palace. A person in the last stages of life may also lose control of their bodily functions like urinating and defecating.

While these are the changes you’ll see in someone who’s close to death, what about them? Do they know they’re dying? According to certified hospice nurse Penny Smith, who goes by the name Hospice Nurse Penny on YouTube, they do, mainly because of what most people say before they die.

Dying people talk of having to ‘go away’

Penny Smith, who’spassionate about end-of-life advocacy and normalization of death, thinks that people who are close to death sometimes tell us that their time on earth has come to an end. “They might say, in no uncertain terms, ‘I’m dying soon,’ but often they tell us in metaphors,” she added.

They might say things like, “‘I need to pack my things,’ ‘I’m getting ready to leave,’ ‘I’m going on a trip,’ ‘I want to go home,’ or even just, ‘I’m tired,'” shared Smith. For the loved ones who are watching the process, it’s a matter of leaning into and listening to what they’re saying. By following their cues, you’ll really have the chance to say goodbye and express your feelings before they no longer understand, explained the hospice nurse.

People on their deathbeds are often concerned with mending relationships, navigating regrets, and spending time with loved ones. In fact, according to Fellow of the American Academy of Hospice and Palliative Medicine, palliative care physician, and author, Dr. Ira Byock, the words, “Please forgive me,” “I forgive you,” “Thank you,” and “I love you,” become even more meaningful when death is near. As a loved one who’s close to someone nearing their end, facilitating these important conversations could be the biggest gift you can give them.

Someone near death may feel peace

According to a 2014 study published in Resuscitation, people close to death sense being separated from their bodies and feel peaceful. The research involved interviewing 140 cardiac arrest survivors with near death experiences from the U.S., U.K., and Austria.

Neuroanatomist and author of the book, “My Stroke of Insight,” Dr. Jill Bolte Taylor, who experienced a sense of bliss when she had a stroke, per Forbes, thinks her euphoric sensations when close to death may have had to do with what part of your brain dies first. The left brain is often credited with all that’s logical, mathematical, and factual in our thinking, while the right brain is where creativity, imagination, and feelings thrive (via Healthline). Dr. Taylor thinks that when we’re close to death, it’s the right side of our brain that endures.

“When we’re on our deathbed, the left brain begins to dissipate. We shift out of all the accumulation and the external world because it’s no longer valuable. What is valuable is who we are as human beings and what we did with our lives to help others,” she told Forbes. Perhaps this is another explanation as to why someone who is about to die is concerned with mending relationships. Even if we don’t have all the answers about what people see and hear before they die, we do know that they want to spend their last moments in peace and love. Maybe this will help us do the best we can to make the experience of their passing meaningful for them.

Complete Article HERE!

Why Some People Wait To Die Until They’re Alone

By Jennifer Anandanayagam

Dying alone usually has a negative connotation attached to it. This is probably why movies portray it as sad and heartbreaking. On the flip side, dying while being surrounded by friends and family is often thought of as a good death. The person was loved and made to feel secure as they passed on. They didn’t have to endure the pain of dying alone.

But what happens in the final moments of death is a subject that’s largely still being discovered. No one really knows for sure definite answers to the big questions like “Does your consciousness continue after you stop breathing?” or “Will you have a better death if you have loved ones surrounding your bed?”

Social researcher and death studies scholar Glenys Caswell from Nottingham University noted that, for some people, dying alone is something that they choose of their own accord (via The Conversation). One of Caswell’s studies, which was published in the journal Mortality in 2017, involved interviewing 11 elderly persons who lived by themselves and seven hospice nurses about their thoughts surrounding dying alone. While there was some belief among the hospice nurses that dying alone is not something they’d endorse, Caswell found that for the older people, “dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred.” They preferred it to having their freedom curtailed or being confined to a care home.

They might die alone to spare their loved ones pain

Lizzy Miles — a Columbus, Ohio-based hospice social worker and author of “Somewhere In Between: The Hokey Pokey, Chocolate Cake and The Shared Death Experience” — is of the opinion that some people can choose when they die. She wrote in the hospice and palliative medicine blog Pallimed that people who choose to wait and die alone might be doing so out of concern for their loved ones.

“We have those patients who die in the middle of the night. We hear stories about the loved one who just stepped out for five minutes and the patient died. We may have even witnessed a quick death ourselves. I believe this happens by the patient’s choice,” wrote Miles. She added that this happens mostly in instances when the dying person is a parent. “I believe it is a protective factor,” she explained.

Henry Fersko-Weiss, a licensed clinical social worker and executive director of the International End-of-Life Doula Association, feels slightly differently about the topic. While he doesn’t discount the fact that some people might die alone, he shared in a YouTube video that people like feeling connected and safe before they pass away. Fersko-Weiss said that “because of the way we think about death, [we] feel that we’ll be a burden to loved ones” if we let them see us die. Sparing loved ones the pain of it all might be at the heart of the decision but this is something friends and family should have an open conversation about, he added

Having an open dialogue with your loved one can help

No matter how painful those final moments might be, it can be a good idea to equip yourself with the right tools to have open conversations that foster understanding on both sides, say the experts. You might want to lean into what dying people want you to know about how they’d ideally want to go, and also assess your own emotions, cultural biases, and ideas around it. If you’re unable to broach the topic yourselves, enlist the help of hospice care workers or even a therapist.

It is possible that the person who is dying is concerned that the loved ones whom they are leaving behind will carry with them for the rest of their lives the burden of seeing them pass, shared Fersko-Weiss in the video. You could reassure them by saying something like, “Of course, we want to be there. It doesn’t matter how it looks or how it sounds or how emotionally difficult it may be to be present. It is part of our love for you that we would want to be there,” said the death doula.

How you choose to be present when someone you love is dying is a decision both the dying and those being left behind can arrive at together, per the experts. And, in the instance when your loved one chooses to wait and die alone, “openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death,” added Caswell

Complete Article HERE!

Can We Choose When We Die?

— What We Know

By Jennifer Anandanayagam

Movies, books, and even personal accounts record how, sometimes, people who are in the last stages of life hold on until something they dearly wished for gets resolved. It could look like reconciling with a loved one, spending time with someone they haven’t seen in years, or getting the blessing of a priest.

Given that there’s a lot we don’t know about what people see and hear before they die, is there any truth to the fact that we can choose when we die? Can we willfully resist death until we’re ready to let go? Science tells us that dying is a process: The person’s breathing slows down; their skin color and temperature change; they might experience difficulty breathing; they could sleep a lot more than usual; and their thinking and other senses may dwindle, per Health Direct. However, according to several hospice and palliative care workers, there is some truth to the thinking that people can hold on till they’re ready to let go.

Dr. Toby Campbell, a thoracic medical oncologist in the Division of Hematology, Medical Oncology and Palliative Care at the University of Wisconsin School of Medicine and Public Health, told STAT News, “People in end-of-life care wouldn’t bat an eye if you asked if they think people can, to a certain degree, control those final moments. We’d all say, ‘Well, yeah. Sure.’ But it’s inexplicable.” Science might not have studied this phenomenon extensively nor arrived at one possible explanation, but there are some theories.

It could be related to a hormonal stimulus

Old lady being hugged nurse

What allows someone in the last stages of dying to prolong their life until some unfinished business is completed? Dr. Campbell thinks it could have something to do with a hormonal stimulus (via STAT News). People in the final stages of death “probably have some kind of hormonal stimulus that’s just a driver to keep them going. Then, when whatever event they were waiting for happens, the stimulus goes away, and there must be some kind of relaxing into it that then allows them to die.”

Charles F. von Gunten, a pioneer in the field of hospice and palliative medicine, agreed. “What people will do for one another in the name of love is extraordinary. I think of it as a gift when it happens,” he told The Washington Post.

However, there might be something else that happens that gives dying people a chance to enjoy what time they have left with loved ones before they die. Healthcare professionals call this “rallying” or “the surge,” as explained by licensed hospice nurse, Julie McFadden, who goes by the name Hospice Nurse Julie on YouTube. “A patient will look like they are actively dying or getting very close to death … And then suddenly, they perk up and they start acting like their old selves again. They may be hungry, eat, talk, laugh, joke around, be a little sassy with their family … They frequently do this and then pass away usually the next day.” Again, this isn’t understood well by healthcare workers but it does give loved ones a chance to say goodbye.

How to let go when death is near

Family visiting grandfather in hospital

Regardless of whether your loved one is holding on so they can spend more time with you or they are experiencing a surge in life just before dying, death is often something we aren’t prepared for. Some people may even experience what is known as “anticipatory grief” — feelings of loss even before their loved one has actually died.

What dying people want you to know, on the other hand, might change depending on their particular life situation; but there is a big possibility that there might be regrets, most of which might have to do with relationships.

The author of the book “Dying Well: Peace and Possibilities at the End of Life,” Dr. Ira Byock, seems to think that we can choose how we die. Byock, who’s a physician and advocate for palliative care, shared in his book that people who are about to die should take the time to say goodbye (via Help Guide). Sentiments like “I love you,” “I forgive you,” “Forgive me,” and “Thank you” are not overrated and should be prioritized between loved ones and the person who’s dying. For loved ones who are letting go, it might also be important to let your dying family member know that it’s alright for them to go and that you will be okay. It could offer immense relief to them when they need it most.

Complete Article HERE!

End of life nurse shares what people see when they die

@hospicenursejulie

By Ella Scott

A hospice nurse in America has revealed her experience working in palliative care as well as detailing something many experience in their final months alive.

Los Angeles-based carer, Julie McFadden, took to TikTok last year to explain a common sign of death – ‘Visioning’.

According to End of Life Doula, visioning is when dying people believe they are talking to their deceased loved ones. They can also think that they have come to get them, or that they are in the room with them.

@hospicenursejulie What dead relatives before you die. It’s called visioning, and it’s a normal part of death and dying. #hospicenursejulie #hospice #learnontiktok #visioning #educational ♬ original sound – 💕 Hospice nurse Julie 💕

In a clip posted to social media in October 2022, Julie said: “Here is my most comforting fact about death and dying. The craziest things we see on hospice is that most people will start seeing dead relatives, dead loved ones, dead friends, dead pets before they die.”

Continuing on, the 40-year-old said that her patients don’t just start seeing their loved ones days before they die – it can happen up to a month before their death.

“We have no idea why this happens,” Julie elaborated. “We are not claiming that they really are seeing these people. We have no idea.

“But all I can tell you as a healthcare professional, who has worked in this line of work for a very long time, it happens all the time.”

Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie
Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie

Julie said that visioning happens so frequently that hospice workers regularly work to ‘educate the family and the patient’ on the topic before it commences. This is so that they are not ‘incredibly alarmed when it starts happening’.

She added: “And usually it’s a good indicator that the person is getting close to death, usually a month or a few weeks before they die. This brings me comfort, I hope it brings you comfort.”

Since posting the video last year, Julie’s sentiments have wracked up over 48,000 likes and 570,000 views.

The one-minute clip has also garnered over 1200 comments, with many finding solace in the carer’s admission.

One platform user wrote: “The last morning my mom was coherent she said she could already see my grandma, who died 42 (sic) years ago. In our culture we believe our dead loved ones come to lead you. We know her mom was there ready to welcome her to the other side.”

A second said: “Yep! My mother in law was telling her sister that their mother was packing a suitcase for her trip and picked out a dress for her to wear.”

“Yep I had a patient tell me his dog was on the end of the bed told me full description and name, told his wife made her smile,” said a third.

A medium headed to the comments section and wrote: “Spirit will tell us in a session they are the ones to grab our family at their time of death so they are not alone during the transition.”

Another social media user said: “My mother would often tell me that she just had a talk with my dad or one of her sisters. Started about a month before she passed and they looked good.”

Complete Article HERE!

My Husband Is Dying

— Advice from the Cancer Wars

Lou and Leida’s wedding day, 1982

The emotional and physical toll on both of us during our last year together

By Leida Snow

Everybody has a sell-by date, but some folks know theirs in advance. About a year ago, my husband and I had a meeting with a doctor who was new to us. Nice looking man with an open face. He saw our expectant looks and stopped mid-sentence. Looking at Lou he said, “Has no one mentioned that you have stage 4 cancer?”

No one had. We knew there was an issue. Lou has one kidney from birth, and at his yearly checkup, the kidney specialist said to talk to a cancer doctor. But he didn’t seem overly anxious.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live. It was as though someone had taken a very sharp knife and plunged it into my stomach.

The oncologist explained that Lou had cancer cells in his liver, but they were not those expected to be there. They were squamish cells, usually associated with other locations. That meant they had spread (metastasized) from somewhere else. But they didn’t know where they had come from.

A Rare Form of Cancer

Lou has cancer with unknown primary (CUP). It affects 2% to 5% of diagnosed cancers. The doctor’s next words tore at my gut: Because the primary source is unknown, there are no data-based, targeted treatments. In other words, for those with CUP, treatment is a guessing game.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live.

We had gotten the news at NYU Langone, a top-flight institution where we see our specialists. The overwhelming advice was to go to Memorial Sloan Kettering (MSK) in New York, the Gold Standard, we were told.

Given the restricted time frame, we expected MSK to build on NYU’s findings. But they had to re-do tests, to validate the results. Over the following months, I swallowed my anger and frustration, as the days filled with tests, biopsies, CT scans, MRIs, x-rays and hours spent waiting. The immunotherapy and chemotherapy had zero effect on killing any disease. I hugged Lou close as he comforted me when I couldn’t control the tears.

Lou suffered all the side effects — extreme fatigue, drug induced lung infection, steroids to deal with that, removal of huge amounts of fluid from his lungs, and, best/worst of all, the loss of over 30 pounds. Lou has never been fat. Now he is emaciated. I try not to show him how scared I am.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor.

There was the offer of one clinical trial. A hope glimmer. But it had mind-blowing side effects and wasn’t aimed at cancer with unknown primary. Lou decided to pass. I steeled myself to be strong for him.

So now we’ve enrolled in what’s called Home Hospice. It’s basically a space where there is no treatment, but you still hope for a magic bullet. Where I watch my husband become less every day.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor. Lou said he’d bent over to get his shoes and then started to fall without being able to control what was happening. The wall behind him was blood smeared. He had hit his head.

Feelings of Helplessness

Panic. Heart racing. Cloths to press on his head. An ice pack. The hospice said to do what I was doing. Asked if Lou wanted to go to the hospital. No. Didn’t know if I could get him up. But I did. The cut wasn’t deep, but I thought the bleeding would never stop. On his physician’s advice, Lou is no longer taking Eliquis, a blood thinner.

Last year I wrote an article for Next Avenue that flagged that falls can be the beginning of the end. Now it is shattering, personal knowledge.

I’ve cancelled almost everything. Since hospice, there’s minimal interaction with MSK and the long waits. We had to scrub our last session at MSK’s Center for Integrative Medicine. The acupuncture helped Lou to relax, but he was too exhausted to attempt to go.

A Lonely Road

It didn’t feel right to phone and cancel. I went to the appointment and spoke to the doctor. He counseled me to take care of myself. He asked me to keep in touch. His caring for Lou, and for us as a couple, is something I will always remember.

Lou doesn’t want to spend whatever is left of his life in a hospital, and I want to respect his wishes. My insides churn with helplessness.

A couple smiling together in Paris. Next Avenue
The couple on a trip to Paris, one of their favorite places.

My own NYU internist has scheduled a monthly video visit to check up on me, especially since I’ve lost more than 15 pounds unintentionally. And the local rabbi calls this agnostic at least once a week. Some friends have disappeared, but there are those who keep in touch. And, yes, I do have someone I can talk to. But it is a lonely road.

Over a year later, my 87-year-old husband has outlived his prognosis and is a shadow of what he was. But he is here. And I want him here.

Some people get inspired after a diagnosis. They reach for a goal or get everything in order. Lou is frustrated and bored, but he is too worn out to do much of anything. I want things however he wants them.

Mostly, he wants to sleep or read the newspaper or hug me. That’s what I cling to. That he’ll be there to cradle me in his arms me as long as possible. Sometimes we go to the sofa and lie with my head in his lap. Lou believes his job is to take care of me, and some of his distress is that he can’t anymore.

Sleep? Not so much. Exhausted. Deeply. What to do? Besides cry. Besides wish I could do more for this man who’s been my life for over 41 years. Because I can’t imagine my world without him. He’s my rock and my biggest fan, the one whose faith in me is stronger than my own. His all-embracing love is where I am home. Whatever I want to do, wherever I want to go, I want to share those experiences with Lou.

That’s the hardest part of Now. Because I’m with him in this no-man’s land, where we can only cling to each other and wait for the inevitable.

Of course, we would have tried anything, gone anywhere when we first heard Lou’s diagnosis and the medical predictions of our future. But if I’d known then what I know now, I would have encouraged Lou to make a different decision.

Regretting Endless Tests and Treatments

There are cancers that can be targeted. Cancer with unknown primary is not one of those. I hope anyone reading my words never faces what’s in front of us. But if you find yourself in this nightmare, here’s what I would say: Don’t spend whatever time you have going to doctors, submitting to endless tests and treatments, waiting in anonymous rooms filled with distracted, unhappy people. Sitting on uncomfortable chairs, being so vulnerable. Dealing with all-business staff that has all the time in the world, while your time is limited. And waiting. Waiting. Waiting.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed. We would have reminded ourselves how lucky we were to be able to walk home from the theater. We could have taken in New York’s magisterial skyline from celebratory dining spots.

Now Lou is beyond tired. His legs give way and he falls, can’t get up. Sometimes I’m not strong enough, and we have to call for help. His MSK doctor says he’s fallen too many times and is not safe at home. Emotional overload. The doctor wants me to move him to an in-patient hospice. Lou knows not being home is a possibility. He is disconsolate.

No. I am not going to rush into anything. Moving furniture to make room for a hospital bed, even though Lou says he won’t use it. Never-ending efforts to schedule health aides. Medicare comes through with 15 – 20 hours a week. We now need 24/7. Trying not to think too far ahead.

Welcome to the third ring of hell. You may have read that because of COVID many health care workers died/changed careers/moved away. At the same time, more and more people need qualified help. Hours are spent trying to figure out what’s possible.

Recently my darling said, “What a terrible burden I’ve put on you.” I thought my heart would crack. “I don’t feel it as a burden,” I said, startled by my truth. What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is. Fortunately, the hospice physician and woman covering for him are knowledgable and compassionate.

So far, there is no pain. One blessing among the horrors. But he is suffering, and we are looking at a future of unknown — though not long — length.

Struggles of a Caregiver

As I’m writing this, Lou is visibly deteriorating. He can no longer turn himself easily in bed or rise to a sitting position without help. He can barely stand for a moment with assistance while he is moved from the bed to the wheelchair.

What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is.

I can’t imagine how people navigate this without a caring partner, but anyone taking on the caretaker role should know in advance: there is mighty little guidance. It’s learn-on-the-job. Case workers and nurses may or may not be thoughtful and compassionate, but you have to think of the questions to ask because too often no one volunteers information.

Are you willing to stay in because you don’t trust that the aide will keep your loved one safe? Or because the aide didn’t show up? Are you prepared to spend hours of your time trying to find coverage even though the agency assured you they would always be able to come through? Can you handle the blowback when you cancel what isn’t working? Can you deal with the additional cost? Are you prepared for the never-ending laundry? Can you function with catch-as-catch-can sleep, only a few hours each night?

My husband is dying. But he’s not gone yet. A few nights ago, he agreed to the hospital bed. He understood that if I don’t get some sleep, I won’t be able to be there for him. He hates the bed. Misses me at night. I miss him too.

Lou eats little, sleeps at odd hours, is restless at night. The aide has to wake me. Lou’s speech is now slurred. It’s hard to understand him. He is angry. He forgets. He wants the hospital bed and the strange people in the apartment gone. He wants me with him all the time. I am terrified.

Addendum: The Death of My Husband

In the daytime, he dozes, wakes, starts to read the newspaper, dozes, wakes, tries again to read. My plan was to write how I would put my arms around him, wanting him to know how much I love him. I was going to share how he would reach out to put his arms around me, wanting me to know how much he loves me.

On September 17th, Lou slept most of the day and night. He mumbled about wanting to go home. I held his hand, said he was home and I was with him. I used to call him my giant, and I told him that I would still choose him out of all the giants in the world. I said I would always be with him and he would be with me. He smiled, squeezed my hand and moved his lips to kiss me.

The next day, he woke and surprised me, wanting to brush his teeth, shave, shower. The aide helped him into the wheelchair and into the bathroom. Afterwards, I warmed some chicken soup. He reached for it and gulped down almost half a cup. Then he lay back to rest. Suddenly he was gasping for breath. And then he was gone.

I am numb. The aide gently repeats that Lou is not breathing. A convulsion of tears. I thought there were none left. Touching him. Taking his hand. Stroking his forehead. Kissing him. What do I do now? I am lost.

Call the hospice. They will send a nurse to sign the time of death. Call the funeral home. They will come. Then what? Vast emptiness. The rabbi calls and says I have to embrace life. Says that’s what Lou would want. Rationally I know he is right. Somehow, I will find a way. I just can’t imagine how.

This year, for our anniversary, June 27th, we had to cancel reservations at a restaurant with spectacular Manhattan views. Lou said it made no sense to go when he couldn’t eat much. He was devastated to disappoint me.

I said: “We’ll always have Paris.”

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