Cancer is associated with a lot of things. Grief, sadness, death, chemotherapy, baldness, and many others are all words or things that have some sort of link to another. However, one thing that is prevalent, no matter what form of cancer one has, is the pain. The fact is, cancer causes pain and, in some extreme cases, the therapy needed to put cancer in recession also causes its share of pain. While not everyone that has cancer requires regular doses of pain relief medication, there is a large segment of them that do.
Just what is it about cancer, and some of the treatments for it, that causes so much pain? Cancer can cause pain by its very nature. As the core of the cancerous cells spreads, it begins to kill more and more of the healthy cells around it. In some people, this process can have them reaching for pain relief drugs rather quickly, while for others, it may not even register. Also, as a cancerous tumour grows in the body, it starts to put a large amount of pressure on whatever organs or systems are around it. Depending on the cancer, this can include muscles, lungs, the heart, or the brain.
This pressure can also trigger a powerful pain response in a number of patients. Finally, the cancer may secrete a number of chemicals that can cause the brain to register a pain response, though this is a trait that does not appear in all known cancers. The medication for these problems generally does not wander very far from standard pain relief medications. Among the more commonly suggested medications are analgesics, such as aspirin or Tylenol. These drugs are relatively low-intensity, which is usually fine for most cancer patients, particularly if the tumour cells have gone into recession. For instances when something more potent is needed to provide the patient with pain relief, there are other options that a doctor can look into. For moderate cases, some doctors will rely on low-strength opioids such as codeine, or non-steroidal, anti-inflammatory drugs such as ibuprofen. Finally, in the most drastic cases, high-intensity opioids can also be used, though these are only rarely prescribed due to their highly addictive nature.
Some people might complain that they aren’t getting adequate medication or treatment for their condition. One factor behind this might have to do with the knowledge of the doctor in charge. There are some doctors who do not ask about pain in cancer patients and are thus unaware of the problem. There are also some doctors who do not have the knowledge necessary to properly treat pain. If that is the case, it is acceptable and advisable to ask that you be referred to a pain specialist to help with the problem. However, if the patient himself refuses or is reluctant to reveal that they are feeling pain, then the doctor can do very little. It is best to remember that a doctor is only able to treat the problems that he is aware of, so keeping him in the dark might do more harm than the illness itself.
Death is everywhere. The lifeless bugs on the windowsill. The dead mouse in the crawl space.
My preschooler, Opal, started plying me with questions when she was four. “Were you the one who died that mouse?” Or, “Do you think that moth knows he’s dead?” Cute out-of-the-mouths-of-babes comments tossed off as she buzzed on to her next activity. I’d gotten used to her frank, unemotional curiosity about death, but when her questions shifted from light banter to a source of terror, I was caught completely off-guard.
It happened just before her fifth birthday. She and her dad, Jesse, were settled on the couch with a copy of The Old Lady Who Swallowed a Fly, a book we’d read to her a dozen times. She swallowed the spider to catch the fly. / I don’t know why she swallowed the fly. / Perhaps she’ll die. Opal suddenly started to cry and said, “When I die, will I still be with you and Mommy?”
Jesse scooped our daughter into his arms and held her as she sobbed into his shoulder. “We love you. We’ll take care of you. We love you,” he assured her.
The next day was filled with more questions, increasing in urgency. Over breakfast, Opal asked, “Mommy, do you still eat when you die?”
I tried to keep my tone matter-of-fact, the way I always had. “No, honey, your body doesn’t need food anymore when you die.”
“It doesn’t? Can you see?”
“No, honey, you can’t see anymore, either.”
At this point in the past, she would have lost interest and moved on to hugging the dog or arranging her stuffed animals on her bed. But not now. “Then how will I know where to find you guys when I die?” The look in her eyes swung to terror and confusion. Then came a rushing stream of tears.
Oh dear, I thought to myself, what have I done? Not only that, I wondered how I, a seasoned mindfulness practitioner, could be so flummoxed by questions about death—the exploration of which is an important part of my practice?
It didn’t matter. I realised I was no more prepared to answer Opal’s questions than many parents of young children, meditators or not. Several other mothers I spoke to with kids around Opal’s age were as confused as I was. One mom told me that her son hasn’t asked about death yet, but she has no idea what she’ll say when he does. Another woman said her daughter is under the impression that “death is something that happens when you are very old, and we’ve just kind of let that assumption ride for now.”
When Opal started asking me about death, I didn’t want to lie to her or overlook the fresh wound of her concern. But I didn’t want to cause her nightmares either.
As it turns out, these moms and I are not alone in our confusion about how to talk to our children about death. Former hospice chaplain Joseph Primo, president of the National Alliance for Grieving Children and author of What Do We Tell the Children?, told me that the discomfort and befuddlement so many of us feel is common in our Western culture. “The fact that parents have to ask that question is really a symptom of a much bigger problem,” he explained. “It’s been multiple generations since we’ve been able to talk about death and dying in an open, healthy, constructive way.” This, he adds, despite the fact that death happens to every single living creature.
What’s more, Primo said, this state of affairs is really unfortunate for kids. “As a result, they wind up making sense of death and loss on their own, when the subject could be a way for adults to give them the tools and resources they need to explore their world, to imagine their life, and to begin wrestling with this part of the human condition.”
When Opal started asking me about death, I didn’t want to lie to her or overlook the fresh wound of her concern. But I didn’t want to cause her nightmares either. I navigated her questions with simple, generic responses and lengthy hugs until I was able to get a better grasp on how to respond.
I began by researching kids’ books on the subject, including Lifetimes by David Rice, and The Fall of Freddie the Leaf by Leo Buscaglia. Both stories focus on the cyclical nature of life. “We all fear what we don’t know,” The Fall of Freddie the Leaf tells us. “Yet, you were not afraid when spring became summer. They were natural changes. Why should you be afraid of the season of death?”
Not a bad start, still I needed more. I needed to know what information was appropriate for Opal’s age group so that I could answer her questions with confidence instead of panic.
“School-aged kids don’t do well with symbolism and metaphors,” advised Joe Soma, a psychologist in Boulder, Colorado. “They need concrete details. It’s best to explain death in simple, scientific terms. Everything lives and dies. The trees and animals have to die to make room for new things to be born.”
“But what if saying that makes Opal even more afraid?” I asked.
“You can acknowledge her fear and tell her that adults feel scared, too,” he said. “But always bring it back around to something concrete like, ‘What did you do to take care of your body today?’”
Opal’s first reprieve from death-angst came during a trip to the farm with friends, days into her questioning. Animals and nature were just the ticket; she didn’t mention death for hours. Her daddy and I had talked to her about the cycles-of-life earlier that morning when we found her crying in the bathroom, toothbrush dangling from her lips. She seemed to take in our words, to understand death and rebirth in her five-year-old way. At the farm, I pointed out the baby pig and the fresh leaves on the trees. New life. But, on our way home, in the vulnerable place of post-play emptiness, she whispered, “Mommy, I’m thinking about it again.”
When we returned, Opal took stock of the life spans of everything in the house. “The fish will live the shortest. No, the plants will. Then the dog will die next, then the cat.” She paused to brush a clump of bangs from her eye. “You and daddy are next, right? But not for a long, long time, right, mama?”
Perhaps Opal was trying to escape thoughts of her own death by assembling lists of things she felt she understood. Mommy and Daddy are at the end of the list. The fish, the cat and the dog have to die before we even think of Mommy and Daddy dying. It’s almost as if those names and that list had the power to stave off death for Mommy, Daddy and Opal. Especially if repeated aloud.
Like Joe Soma, New York City psychologist— and my uncle—Richard Zuckerberg also stressed the importance of using concrete details when talking to kids about death. Moreover, he said, sometimes questions that seem to be about death are really about separation, about losing Mommy and Daddy. He thought this might be the case when I mentioned that Opal had been unusually volatile in the weeks leading up to her pressing questions.
He suggested I use concrete details to reassure her by saying, “I understand that you are worried, but remember how we came back after school today? We’ll always come back. We are taking good care of ourselves and plan to live a very long time, but if something ever happens to us, you will be totally cared for.”
I expected those words to breed more fear in Opal, but I was pleasantly surprised. Instead, she wanted to know who would take care of her. I recited a long list of friends and relatives who would be there for her, no matter what. I could see her taking in the names, one by one, as if she were using them to weave a huge safety net around herself.
In my quest for answers, I met with Michele Bourgeois, an educator, social worker, and school counsellor in Lyons, Colorado, who teaches yoga, mindful breathing, singing, and art to elementary school children. She believes that, “If you give kids many avenues of expression on an average day, you are laying the groundwork for them to have ways in which to process grief when the need arises.”
Joseph Primo pointed out that, “If our end game is to prepare children for life and to give them the tools they need to be resourceful, empathic beings, then we are required to model warmth, encouragement, and a willingness to not know, yet to be present. We want our kids to know that they can tackle all things when they are surrounded by people who love them,” he said.
“Often, it’s not about us providing them with the answers, as much as creating the space for them to explore their own feelings.”
– Joseph Primo, president of the National Alliance for Grieving Children and author of What Do We Tell the Children?
So far my talks with Opal were about death in the abstract. But I couldn’t help wondering what to say when she experiences the death of someone close to her. Her 92-year-old Papa Jack and our grumpy but sweet old cat, Gilda, are beloved members of our family nearing the end of their lives.
Joseph Primo offered some guidelines: “The D-word is critical, not ‘passing away.’ To help children understand ‘deadness,’ they need language and facts to imagine it and to wrestle with it.” He added that metaphors and commonplaces can be incorporated into the conversation if they’re important to you, but that’s not the best place to start.
He also recommended saying essentially the same things to a five-year-old as you’d say to a 10-year-old or a teenager. “Name the specific disease or reason for dying, otherwise the child will imagine something worse,” he advised. “Give enough information to help the child understand the situation and what’s happening. That’s the ultimate goal. Then pause, create the space for her to process, to explore, to ask questions. Prioritise how many facts you give. See how the child responds, then say more, depending on what they’re looking for.” Chances are, you won’t go into the same kind of detail with a five-year-old as you will with older children, since younger kids are less able to absorb a lot of information.
When I asked Primo if he could provide me with a specific list of things to say to different age groups, he told me he couldn’t, emphasising that every situation is different, as is every child.
“There’s a lot of room for judgment calls, and parents making choices with what they’re most comfortable with at the time,” he said. “Ultimately the parent knows the child best, so they have to trust their instincts.” However, letting the child know that their feelings are normal is key. “There’s plenty of room for anger, sadness and confusion,” he added. “Create a space where they can safely discharge their emotions without judgment.”
“So I didn’t traumatise my child that morning over breakfast when I told her that dead people don’t see?” I asked him.
“Hardly,” he replied. “Parents need to be OK with their child being scared and uncertain. Often, it’s not about us providing them with the answers, as much as creating the space for them to explore their own feelings.”
My friend Misty Lebowitz is one of the moms I spoke to during the course of my research. She learned the importance of telling children the truth about death the hard way. When her own father died when she was just 14, no one in her family talked to her about it, leaving her heartbroken and confused. So when her sons’ grandfather was diagnosed with cancer when the boys were eight and 12, Misty delivered the news straight. “Your grandfather has cancer,” she told them. “The doctor said he would live only for a few more months. He loves you, but he doesn’t want any visitors. So let’s make him some videos to tell him we love him.” Misty set up the video camera and gave the boys privacy to express themselves. “There were a lot of tears after Grandpa died,” she told me, “but at least we knew the boys were aware of what was going on.”
Two years later, she recounted, the family’s beloved dog, Maddox, died unexpectedly late one night. She was rushed to the vet, but nothing could be done to save her. Misty insisted on waking up the boys so they could see their dog before she died. “My mom told me I was crazy,” she said, “but I knew it would be worse if Maddox just vanished.” The boys got to hold her and kiss her before she took her last breath. “They were grateful to get to say goodbye to her and to see that she wasn’t in pain,” Misty said. Months later, her 14-year-old son wrote a heart-wrenching poem about Maddox, and the grief and loneliness he felt without her. He read it to his entire school.
Still, I wondered, what about kids and funerals? Should we take them or not?
In What Do We Tell the Children?, Primo writes, “Funerals can help kids do their grief work if the children themselves have a voice and a choice.” He explains that some kids will not want to attend, which is fine as long as they have the information they need to make that decision. But if children think they’d like to go, it’s important for parents to let them know exactly what to expect.
He elaborates: “The majority of children, however, will want to be there every step of the way. And they will want to talk about it, explore the meaning of it, question the process, and revisit the ritual in the future.” On the other hand, he says, kids who are not involved in the process may harbour resentments and feelings of exclusion well into adulthood.
Primo recalls a story of a little girl who, at three, requested to hold the body of her newborn brother, who had died of complications during birth. Her mother honoured her request. “She held him tight, kissing his forehead over and over. Then she returned him to the table and asked, ‘Mom, can we go get ice cream now?’”
Luckily, the subject of death continues to be hypothetical for Opal. Not long ago she brought it up again while I was slipping a sundress over her head, but her tone was far less anguished than before. Her focus had shifted, too, from the act of dying to what happens afterward. “So,” she said, as if re-visiting a topic to review for an exam, “tell me what happens after you die.”
“People believe different things happen when you die, sweetie. We believe that even though your body stops working, your spirit…” I paused, knowing she was not familiar with the word spirit. “Love, your love continues to live on in another body. We believe you are born again. And all the goodness you create in this life will follow you to your next life.”
Opal smiled. “So,” she said, “we come back as babies? I love babies. They are so cute! It’s like all of our hearts are connected by a rainbow. One long thread of a rainbow. I get it now.”
Later that day, she strolled into the kitchen after watching one of her favourite cartoons and announced, “It’s time for me to have a sister! How do we get one, Mommy, pleeaase!?”
I looked up from my computer, took a long sip of tea and thought to myself, wait—can’t we talk about death?
For many, grief is a natural process. You sort of have to just go through it to get to the other side.
However, that doesn’t mean you should experience it passively. Taking control and ownership of everything you can do to stay healthy and sleep well during this time gives you a sense of power. More importantly, it helps you recover from this loss with less pain than necessary, and lowers your risk developing complicated grief.
The evidence is strong that good sleep hastens recovery toward “successful” bereavement. This is especially true for the wide swath of individuals suffering from LLSB grief, who are more likely to be seniors. Their risk of morbidity can be significantly reduced by maintaining good sleep.
One study found that those who took 30 minutes or more to fall asleep had more than twice the death rate of their better-sleeping peers. Another study confirmed these findings. Individuals with poor sleep efficiency (spending less than 80% of their time in bed asleep) were nearly twice as likely to die as well.
Researchers have found that treating grief also improves sleep. However, sleep problems may still linger if they are not addressed directly themselves. Follow these tips to improve your sleep.
Are you or someone you care about grieving and experiencing sleep issues? If your symptoms and sleeplessness have persisted for 12 weeks or more, it may be time to get professional help.
Cognitive-behavioural therapy (CBT) is an effective form of psychotherapeutic treatment for anxiety, depression, insomnia, and more. Studies of individuals with CG or LLSB have found CBT effective for improving their sleep and daytime symptoms of insomnia.
During CBT, the patient works with their therapist to recognise the negative or blocking thoughts and behaviour they have that make them feel worse, heighten their anxiety, or encourage insomnia. Then, they learn how to replace those thoughts and behaviours with healthier ones.
For example, a person receiving CBT-I (CBT for insomnia) may learn that their haphazard sleeping schedule is contributing to their insomnia, and work out a consistent sleep schedule with their therapist. A person in grieving, however, may develop a phobia or anxiety that they won’t fall asleep because they’re suddenly having trouble sleeping, and they don’t recognise that it’s a normal reaction to a loss. They may think negative thoughts about never being able to recover from the loss, which heighten anxiety, depression, and lead to restless sleep. CBT can help tease out these thoughts and encourage the individual to face and overcome them.
Taking a cue from the CBT recommendation above, a consistent sleep schedule can help you get a more regular amount of sleep on a nightly basis. Go to sleep and wake up at the same time every day, including weekends.
Avoid napping during the day, as this will only make it tougher for you to fall asleep at night. If you are absolutely exhausted, limit your nap to 20 to 30 minutes at the most. This short nap length will prevent you from falling into deep sleep, from which it’s quite difficult to wake up from.
During this time, it is important that you spend time with people who love and care about you. Find people who will allow you to share your stories, your grief, and your tears without judgment, but who will also know when to help distract you by doing an activity together.
If you are feeling lonely, ask friends or family to spend the night. You might invite your pet to sleep in bed with you. If you shared your bed with the person who’s passed on, try sleeping on their side – it may be less painful to see your side empty. You may also use a body pillow to remind you of them.
While they may help you fall asleep initially, many of these substances actually disrupt the quality of your sleep – and they can lead to addiction and permanent changes in your sleep architecture when abused.
You may ask your doctor about melatonin, which is a natural supplement that can help promote sleep. Even sleeping aids should only be used as a temporary solution. Instead, focus on the behavioural strategies outlined here to improve your sleep to the best extent possible.
Exercise gets your endorphins going and helps you feel physically better. It provides a distraction from the pain you are going through, and it also helps you sleep. By physically tiring your body, you will fall asleep more easily by bedtime.
Just take care to complete your exercise in the morning or earlier part of the day. That activating energy can wake you up, so you want to avoid doing it too close to bedtime. Also try to exercise in the sunshine if possible, for an extra lift in energy and mood.
Just like exercise, what you eat affects your mood and your sleep, too. It may be more challenging than ever to get out of bed and avoid indulging in bad foods during this time, but it only makes it that much more important.
Do your best to eat healthy foods and avoid overly sugary, junky, or fatty foods. The same foods that don’t make you feel great emotionally or physically also disrupt your sleep. Instead, incorporate more of these healthy, sleep-promoting foods into your diet.
Also, even though caffeine is fine for some people, limit your intake past the afternoon and overall. It activates your nervous system, keeping you alert and potentially anxious.
Walking through the steps of your bedtime routine will train your mind to recognise that it’s time to go to bed, and while also clearing your mind of sad thoughts. When we lose someone close to us, it disrupts our daily routine. Establishing a bedtime routine can also help give you a sense of control again, bringing a sense of order back into your life.
Include relaxing activities in your bedtime routine. These will calm your anxious spirit and nervous system, preparing your body for sleep. Options include:
If you wake up during the night, don’t stress. Disrupted sleep is a common part of grief. If you can’t fall back asleep after 10 minutes or so, get out of bed and go into another room. This part is key – you don’t want your mind to start viewing your bed as a place where you lie awake and frustrated.
In the other room, you might again try one of the relaxing activities from your bedtime routine. You might also take the time to journal. Write about happy thoughts and memories, calming your mind and giving you something to focus on besides the fact that you can’t sleep.
Electronics like our smartphone flood our eyes with strong bluelight. Our brain perceives this as sunlight, and accordingly tries to keep us up and awake.
Beyond the physical reaction, electronics often provide stressors of their own, even though many of us view them as leisure devices. Dramatic TV shows can affect our nervous system, social media notifications may remind us of our lost loved one, and emails may arrive from the funeral home.
Avoiding electronics in the 60 minutes before you go to bed helps you mentally break away from these distressing reminders, while avoiding confusing your brain about what time of day it is.
It’s possible you have items that remind you of the loss in your bedroom, whether it’s a photo of you and your pet, a memento of the person. You may even have shared your bed with the person you’ve lost. It may be easier for you to cope if you remove reminders of that person from your room – at least temporarily. Seeing their face or clothes may trigger your grief.
Also be thoughtful of how else your bedroom is helping or hurting your sleep. You may take this time to redecorate your room, giving you something to focus on that provides hope. Choose calming, relaxing colours and clear your bedroom of clutter. A calmer bedroom environment makes for a calmer mind, more conducive to sleep.
It might also be time for you to get a new mattress. Sleeping on a high-quality, comfortable mattress makes it easier for you to fall asleep, and the new one may remind you less of your lost loved one.
Finally, avoid doing anything besides sleep or sex in your bedroom. Work, fun, and other activities wake up your brain. You want your brain to see your bedroom as a place solely for sleep.