Yesterday’s Daily Mail published an extract from hospice nurse Julie’s riveting new book in which she told about an ‘angel’ that appeared above a patient’s bed. Here, in the final part of our thought-provoking serialisation, she explains other fascinating phenomena.…
Juanita was in her mid-80s. She lived with her adult son, Ricky, who was 50 and had an intellectual disability. Their carer, Marianna, lived with them and had taken care of them both for several decades.
When I visited them for Juanita’s initial assessment, the love between the three of them was palpable.
It also was clear to me that Juanita was not dying any time soon.
From her experience as a hospice nurse, Julie McFadden believes that certain people can choose when they die
So when I received a call the following week to let me know she had died, I was shocked. I mean, I really couldn’t believe it. I had just seen her and she’d been doing really well. There had been no signs that she was near death.
When I got to the house, Marianna detailed the previous day for me.
As they did every Sunday morning, she and Juanita had made blueberry muffins together. After an afternoon nap, Juanita joined Ricky and Marianna for dinner, then they watched TV and Marianna helped Juanita get ready for bed.
As she settled down, Juanita became sentimental and asked Marianna to come close to her.
‘Thank you so much for caring for me. I love you so much.’
‘I love you, too,’ Marianna said.
Juanita continued: ‘I’m really tired. I’m going to leave and go home.’
‘What are you talking about?’ Marianna asked.
‘I’m tired, and I’m going home,’ Juanita repeated.
Marianna reassured her, ‘Everything’s fine, Juanita. You are home. I’ll see you tomorrow.’
‘No, I’m really tired. I’m going home. Promise me that you’ll take care of Ricky.’
‘Of course! I’ll always take care of both of you. Stop talking like this.’
Juanita asked Marianna to invite Ricky in to say goodnight.
When he bent over to give his mother a goodnight kiss on the cheek, she reached up to squeeze his neck. ‘I love you, sweet boy,’ she said. ‘And I’ll always love you.’
‘I love you, too, Mum,’ he answered.
The following morning, when Marianna opened the door to check on Juanita before breakfast, she discovered that she had died peacefully in her sleep. It was as if she chose when she would die.
Of course, not everyone appears to have control over their time of death, but when they do, I often see one of three things happen:
1. The person waits to die until every last one of their family members or friends arrives to be present with them.
2. The person waits to die until every last family member or friend leaves the room or the house.
3. The person waits to die until after a milestone – a birthday, Christmas, the arrival of a baby.
All of these scenarios are so common, in my experience, and I’ve seen each of them play out many, many times.
The person dies when everyone has arrived
‘Sometimes a person chooses a date with personal significance – a holiday, wedding, birthday or anniversary – and dies on that day,’ writes Julie
Sometimes a person will wait until all of their loved ones have flown or driven in to say goodbye. Or they’ll wait for every person to be physically present in the room with them and then they’ll let go.
This most often happens with a person who’s social and extroverted; who thrives off the energy of others.
Rachel had turned 100 just five months before I met her at a hospice. On her birthday, a huge crowd of children, grandchildren, great-grandchildren, and great-great-grandchildren gathered to celebrate the life of the family matriarch.
When I evaluated Rachel, it was very evident that she was in the stage of actively dying. All the signs were there. I saw it in the pallor of her skin. I heard it in her breathing. I noticed it in her lack of interest in or ability to eat food. The end was near.
‘So,’ I explained to Rachel’s two daughters who were in the home when I stopped by to do the admission. ‘What I’m seeing is that she’s actively dying. That means that in the next few days, she’ll die. So whoever needs to be here, get them here.’
Over the following two or three days, family members flooded into Rachel’s home to say goodbye. Although she was unresponsive, I was still glad to see the love that was surrounding her.
When one of Rachel’s daughters told me that one of the grandchildren couldn’t make it until the following week, I knew she’d get there too late to say goodbye.
When I came to the house a week after I’d predicted Rachel had just two or three days to live, I met this granddaughter. I was very surprised Rachel had lasted a week.
A week later, another grandchild, living some miles away who hadn’t even planned on coming, had a three-day weekend and showed up to say his final goodbyes.
How Rachel had lasted two weeks, fully unconscious, without food or water, baffled me. Whenever I’d visit, I could hear Rachel’s daughters giving her updates about who still wanted to come to say goodbye to her, and Rachel kept living. In the end, she lasted 17 days in that state of actively dying, without food or water. Just hours after the final family member came to say goodbye, Rachel finally let go.
I’d never seen anything like it. Rachel absolutely decided when she was going to die.
The person dies when everyone has left
Conversely, some people wait until their loved ones have left their bedside before dying.
Sometimes these family members have kept vigil for hours or days, yet it’s when they finally step away that the person dies.
Whether they leave to go home and rest for the night or just step out to grab a cup of coffee, that’s when the person – often someone who’s more private or introverted, who prefers time alone – dies.
When someone chooses to die when no one’s around, family members have confessed to me that they feel guilty, as if somehow they’ve failed their loved one by not being present with them in the actual moment of their death.
They might wonder, ‘Is he punishing us?’ or ‘Is she trying to get back at me for something?’
No. This is just something they needed to do for their own dying process. Much like in life, in death, a person’s behaviour isn’t usually about us, but about them and what they need.
If we imagine that the person who is dying was ‘holding on’ in some way for the sake of those in the room, then giving the person the space and solitude they need to let go is the most gracious thing we can do for them.
I don’t think anyone who’s spent any kind of time with the person who’s dying should feel guilty for not being present at their last breath. It’s likely that that is exactly how the dying person wanted it to be. Take comfort knowing that it’s what they needed.
The person dies after a milestone
Sometimes a person chooses a date with personal significance – a holiday, wedding, birthday or anniversary – and dies on that day. I’ve noticed that these people are often the ones who are very wilful or independent (aka stubborn), as well as those who have deep connections to tradition or specific anniversaries that shaped their lives.
Mitzy, one of my followers on social media, shared this amazing story with me.
Her mother was in hospice-at-home care while Mitzy’s daughter was nine months pregnant. Mitzy was sitting in a chair beside her bed, reading, when she received a phone call that her daughter was having contractions.
Mitzy was torn. ‘Mum, I don’t know what to do,’ Mitzy told her mother, who was still lucid. ‘I don’t want to leave you. I’m afraid if I leave, something’s going to happen, but I do want to see my grandson being born.’
Julie’s book Nothing To Fear, which provides extraordinary insight into death and the concept of an afterlife, will be published on June 13
Mitzy’s mother assured her: ‘Honey, you have to go. If you don’t, you’re going to regret it. Don’t worry about me. I’m going to stay here until your grandson is born.’
When Mitzy checked in with her brother from the road a few hours into her trip, he reported that as soon as Mitzy left, their mother seemed to go into a deep sleep.
Late that night, after Mitzy arrived at her daughter’s home, they discovered the contractions were, in fact, Braxton Hicks – meaning it was a false alarm. No labour. No grandson.
The following morning, Mitzy drove straight back home to be at her mother’s side. Even though her mother was unresponsive, Mitzy narrated the trip for her, explaining that the baby had not yet come. Then she remembered her mother’s promise. Gently, with kind assurance, Mitzy whispered in her mother’s ear: ‘It’s OK, Mum. You can go. It’s OK.’
But her mother held on. A whole week later, her mother was still unresponsive.
When Mitzy’s daughter went into legitimate active labour, Mitzy repeated her trip to be with her daughter and welcome her grandson. After the birth, Mitzy phoned her mother’s home and asked her brother to put the phone to her mother’s ear. ‘Mum, we have a healthy grandson. He has ten fingers and ten toes! Everything went great.’
Mitzy’s brother called her back 15 minutes later to let her know that their mother had died.
The family would always joke that Mitzy’s mother and the baby high-fived each other, one entering this world as the other was exiting.
I don’t pretend to understand how and why these things happen to those who are near death. If your loved one is having experiences like these, I encourage you to notice how they are affected by it. That’s the important thing.
Do these experiences — real or not, science or science-fiction — comfort, soothe, calm, or reassure the dying person? If you’re hesitant to believe that something real and meaningful is happening in your loved one who is dying, notice what the effect is on them. If it’s positive, then just go with it. Notice how it helps.
As much as we’d like to, we simply don’t understand everything about these encounters. They’re mysteries. For my part, I can say that my own few experiences have given me nothing but confidence that a better world awaits us. I do believe that there’s an afterlife because of experiences like these.
Having witnessed so many deaths, I feel like I’ve had the privilege of seeing a veil being lifted as people are on their way to a place that feels like home.
Obviously, there’s sadness, too, because people are grieving and losing a loved one. But watching the body take care of itself and feeling the energy in the room change after someone dies . . . if you can remain present, it can feel sacred.
In many ways, it feels a lot like the wonder of birth. When a baby is born, there’s an undeniable feeling of, ‘That was magical!’ That is how it can feel when you see someone taking their last breath.
Since I was a little girl, I’ve always felt homesick for a place that I couldn’t quite remember, and now I think I understand why.
I think that when we die, we awaken in a place we’ve always known but had forgotten.
● Adapted from Nothing To Fear, by Julie McFadden, to be published by Ebury on June 13 at £16.99. © Julie McFadden 2024. To order a copy for £15.29 (offer valid to June 31, 2024; UK P&P free on orders over £25) go to mailshop.co.uk/books or call 020 3176 2937.
My advice to caregivers: let the dying be boss
In the Netflix series From Scratch, Amy’s husband Lino is dying from cancer. In one episode, we see Amy’s family looking at their calendars and trying to work out how to provide care for Amy, Lino, and their seven-year-old daughter.
They’ve busied themselves with tasks, but no one’s talking about the fact that Lino is in the process of dying.
After dealing with responsibilities for the next two weeks, someone asks: ‘What about next month?’
Cautiously, Amy’s sister Zora asks: ‘Are we sure we should be looking that far ahead?’ With anxiety in her voice, her stepmother, Maxine, asks: ‘Zora, what are you saying?’
Amy’s father says, with kindness: ‘The doctors haven’t given up on him. Lino’s beat this thing before. He’ll do it again.’ Amy’s mother adds: ‘And once he’s stable, there’s a treatment I read about.’
This is often how it happens in real life. The cheerleader says: ‘He’s beaten it before. He’ll do it again.’
The optimist says: ‘There’s a treatment I read about.’
The denier says: ‘I can’t hear that right now.’
Amy with her husband Lino, who is dying from cancer, in the Netflix series From Scratch
And yet, Zora was facing reality squarely: ‘He just doesn’t seem to be getting better.’
This is the best advice I can give you, as a caregiver – accept what is happening. Fighting for life is what we were built to do, but when a person is near the end of life, the fighting mentality is not helpful.
I understand the inclination to make sure the person you love is well hydrated, well fed, and well rested. You may want to line up visitors so they aren’t lonely. You may feel cautious about offering too many pain medications. I want to relieve you of these very well-intentioned impulses.
Don’t waste time arguing about food, drink, exercise or sleep. The person who is dying should be allowed to make their own choices. To the degree that they can express their wishes, they have the right to do any and all of the following: Drink alcohol, smoke cigarettes, eat foods high in sugar and fat and take enough medication to control pain.
‘But Julie,’ you may be saying, ‘letting the person who’s dying run the show doesn’t feel right to me. She can’t eat doughnuts – she has heart disease!’ Or, ‘The reason he’s in this mess is that his drinking caused cirrhosis of the liver!’ Or, ‘She has lung cancer because of smoking!’
I know, I know. All I can suggest is that this is the time to let that go.
When someone is at the end of life, it’s not the moment to fight for what would have been healthy in another stage of life.
Do you have to hang around and watch them suck in the nicotine? No. But do let the person who is dying make those personal choices for themselves.
If you respect your loved one’s wishes, you’re not being a bad daughter or son. It’s their body, so let the person who’s dying be the boss. This may help them, and you, find peace.
Burst of energy is a last hurrah
This phenomenon happens in about 30 per cent of dying patients and can last anywhere from a few minutes to a few hours to a few days. It can be referred to as the ‘surge’ and the technical term is ‘terminal lucidity.’ I like to think of it as a patient’s last hurrah.
When it happens, we see a person who’s been declining experience a burst of uncharacteristic energy. They may look better, get up and walk around, talk to their family or caregiver, or eat a meal.
During the rally, the dying patient may get their old personality back, become their sarcastic self again, make a joke or tell stories. Family members might say: ‘He seems like his old self again.’
This period is marked by mental alertness that may not have been present in the weeks or even months beforehand. Even in patients who have been affected by degenerative diseases, a return of cognitive functions can happen for a short time. The rally is different from someone who’s ill and just happens to have a good day. After the rally, the patient returns to their former condition and soon dies.
If this sort of resurgence lasts longer than a few days, it’s not a rally, and something else is going on.
This is why education about death is so important. If families aren’t educated about what might occur, this surge of energy can give families false hope of a recovery. When the person then dies soon afterwards, it can be a shock.
Healthcare professionals don’t definitively know why the rally happens in so many patients. I find it to be a massive gift. The families get to experience their loved ones one last time, and patients get to put any final things in order or say any last words.
When we recognise the rally for what it is, we’re able to enjoy it for as long as it lasts. It doesn’t happen for everyone, but for many, the rally is a normal part of death and dying.
Dogs that feel owners’ pain
It’s not just people who experience seemingly supernatural phenomena.
The daughter of a patient told me that as her father was dying, he and his dog both fixated on a particular corner of the room for a week before he died. Just stared at that corner, together. It was as if the dog could see exactly what his owner was seeing, whatever that might have been.
Another woman who was caring for her husband as he was dying told me she had to keep taking their dog to the vet. He was lethargic, he no longer wanted to go out on walks and was vomiting. But on visit after visit, the vet could find nothing wrong with the dog. They finally realised the dog was mimicking the husband’s symptoms.
Although this sort of extreme behaviour isn’t common, a pet will often behave in a very protective way around a dying owner. They refuse to leave their side. They may lie on the bed with the person who is dying, or they might lie under it.
So, just as people can experience something beyond this world, it appears that our pets can, too.