When Dying Meets Denial

#truelove #allowing #dating

GPS for the Soul – The Huffington Post
When Dying Meets Denial
When Kei Okada, a spiritual care counselor, met recently with Alma Spitz, an 83-year-old New Yorker with end-stage liver cancer, she had been eating better and voiced what many of us might think of as denial. “I used to be quite a walker,” she said. “When I’m better, I’ll get out on my walks again.”

She knows all her medical diagnoses, knows her time is limited, Kei says. Yet she hopes. She hopes, and yet she knows.

This, explains Kei, is not uncommon in the dying process — something known as “middle knowledge,” a state between knowing and not knowing. “When a person is feeling stronger than last week or last month, they might say, ‘Maybe, just maybe, I will be better again. Maybe I can travel, go on walks…'” says Kei, a Board Certified Chaplain who is one of my colleagues at Visiting Nurse Service of New York Hospice and Palliative Care.

“The person can say, ‘I have a terminal condition’ — that knowledge is in the head,” he explains. “But the heart says, ‘I want to live a little longer.'”

Denial in all its complexity is a full-fledged right of each person who dies, and their families. Rather than being the limiting or destructive condition it can be in other circumstances, denial can be a useful coping mechanism at end of life. It can work against depression and anxiety, allow someone to process overwhelming information in their own time, and create a safe space for families as they transition through the grieving process.

Denial as a common response to dying was introduced into the conversation by Elisabeth Kubler-Ross in her iconic book, On Death and Dying, which details her now-famous five stages of grief. Patients who are in denial, she writes, “can consider the possibility of death for a while but then have to put this consideration aside in order to pursue life. [Denial] functions as a buffer… allows the patient to collect himself and, with time, mobilize other, less radical defenses.”

Functional Denial
Brenda Mamber, a licensed clinical social worker with more than 30 years experience in end-of-life care, recently visited an elderly bed-bound man being tended in his final weeks by his wife. Both Holocaust survivors, the couple had deeply ingrained habits of projecting strength rather than vulnerability and of summoning denial to cope with extreme stress and trauma. “She never acknowledged how sick he was,” says Brenda. “She kept saying, ‘He’s a fighter. If I feed him, he’ll get stronger.'” At the same time, Brenda came to learn that both husband and wife had their end-of-life plans in order, including advance directives, an updated will, and detailed funeral arrangements.

“She doesn’t need to talk about it,” says Brenda. “Her defenses are very important to her, and we need to be sensitive to them.”

More than once, Brenda has been pulled aside at the bedside of an older parent and told by an adult child, “Don’t tell her she’s dying.” Later, when the child or children leave the room, the parent says to Brenda, “You know I’m dying, right?” Here, there is a mutual protective instinct at work among family members.

“Denial gets a bad rap as dysfunctional,” says Brenda. “But actually it can be very functional in protecting a person from an emotional assault of information they might not otherwise be able to handle.”

Dysfunctional Denial
More often than not, denial serves and supports individuals and their families as they integrate the difficult business of dying into their lives. But now and then, we meet someone so fixed in their denial that it indeed stands in the way of their dying how and where they want.

Brenda recalls a young mother who so adamantly refused to consider her life-limiting condition that she made no plans for — and brooked no discussion about — her small children after her death. “She refused to engage around end-of-life planning because it wasn’t going to happen to her,” Brenda says. “Her children didn’t get the opportunity for closure and were sure to be thrown into a crisis when she did die. I remember her so clearly because this depth of denial is rare.”

More common is the patient who denies that he or she needs more help around the house, doesn’t want to be a burden, and ends up dying in the hospital rather than at home because the level of care is simply not there. Here, an honest discussion and advance planning can make all the difference. A hospice worker might ask permission to speak to an adult child, see if the child can arrange shifts of care from family members, a religious community if appropriate, friends and extended family. “The granddaughter may welcome flying in from California to take care of Grandmother if the granddaughter knows time is short,” notes Richard Dundy, M.D., Regional Medical Director for VNSNY Hospice and Palliative Care.

Strategies: On Coping and Communication
Care providers use several good protocols for discussing a life-limiting diagnosis with patients, including Robert Buckman’s book How to Break Bad News and a care team protocol called SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Strategy). Those of us in end-of-life care build on these, our training and our experience to help people meet their final goals — even in the presence of denial. Our aim is not to tear down the edifice of denial necessary to emotional well-being, but, rather, to attend to issues that, if unaddressed, could make the dying and bereavement processes all the more difficult.

With someone whose time is limited, we often begin the conversation by asking questions, gauging what a patient or family member knows about the diagnosis and prognosis, as well as their appetite for more information. Clinicians will often ask, “Do you want to hear more, or should we stop here for now?”

Throughout, we recognize that there is no right way to die and no right way to talk about death. “We must learn the language of the patient,” Kei says. “If we pound on them with the language of ‘should’ or ‘must,’ it takes away their power — and they are feeling so powerless already.”

Respecting the Life Cycle
Occasionally, patients referred to hospice by their doctor refuse to think or talk about dying and ultimately refuse all end-of-life services. “When the apartment door closes, the only solution is increased community education,” Kei wisely concludes. “We need to teach people, from elementary school on, how to see life as a whole. Children study the life cycle of butterflies, starting with caterpillars. They should also be taught how we as humans live and die.”

There’s no denying that.

Working With Mindfulness: Overcoming the Drive to Multitask
There is a good chance that at some point while you are reading this post, you will be tempted to do something else at the same time. Don’t worry, I won’t take it personally. I won’t think badly of you and I won’t even be particularly surprised. Every work place I visit, there is a prevailing modus operandi — multitasking.

Yet there is a growing body of scientific evidence that multitasking makes us less efficient, less effective, more stressed and more likely to make mistakes. So why is it still so prevalent?

I believe there are three reasons why multitasking is still so popular in today’s work environments. First, there are people who are not aware of the research or think they are somehow unique. For people in this camp, I invite you to engage in a debate with your boss and evaluate a financial report at the same time. If you can do both of these cognitive tasks simultaneously, please let me know. I am quite sure there are many neurologists who would love to study your brain!

For the rest of us, the other two reasons why we try to multitask is either because we have too much to do or we are not sufficiently interested or engaged in what we are doing. There is scientific evidence and practical wisdom that suggests mindfulness training can positively address both of these challenges and in the process, increase effectiveness and job satisfaction. Given the downsides of multitasking, this could be highly beneficial for individuals as well as for organizations and is well worth exploring.

Beginning with people who have a lot on their plate and feel the urge to try to do more than one thing at a time to get things done. Let’s say, it is 7 p.m. and you want to get home but first you have to finish one last email. Your colleague calls and asks about an unrelated urgent issue and you can’t resist the temptation to keep typing as you shift your attention between the email and your colleague. Sound familiar? Here is what some researchers found out about this common multitasking scenario.

An experiment conducted by Levy, Wobbrock, Kaszniak and Ostergren looked specifically at the effects of mindfulness training on multitasking behavior of knowledge workers in high stress environments. They found that when asked to do multiple tasks in a short amount of time, those who had been trained in mindfulness, compared to control groups, were able to maintain more focus on each task and had better memory for work details. They were also less negative about the experience and reported greater awareness and attention. In short, they were able to perform multiple tasks more mindfully.

If you are familiar with mindfulness practices, this makes sense. One of things developed in mindfulness training is to become more aware of your attention and increase your ability to choose your focus. If we can train ourselves to have more awareness and control over our attention, it makes sense that we would be better equipped to deal with a demanding work environment.

So when you have a lot to get done and you are tempted to try to do more than one thing at a time you have the mental discipline to choose. Do you continue trying to type the email and answer your colleague’s questions? Or do you let go of either the email or your colleague so you can do one or the other more efficiently and effectively? It’s your choice. But it only becomes a choice if you are mindful of your attention.

Shifting now to third reason why people are tempted to multitask: When they are so uninspired by what they are doing, they consciously or subconsciously look for something else to think about or do for entertainment. According to Gallop’s 2011-2012 study of employees, 70 percent of Americans are not engaged or are actively disengaged in their work. As noted in the report, there is significant evidence that disengaged workers are less productive, make more mistakes, and can be more costly to employers in terms of absenteeism and sick leave.

A study published in the Journal of Vocational Behavior demonstrates mindfulness training can help improve employee attitudes towards work and specifically increase engagement. Again, this makes sense. One of the basic methods of mindfulness training involves paying attention to your breath with alertness, relaxation, and a sense of curiosity. If you can train your mind to be comfortable and curious attending to your breath, it stands to reason that you could choose to apply that same orientation towards any task at hand.

Let’s say you are faced with a large pile of invoices to process. If your mind starts to look for more interesting things to do, it is going to take you longer and you will likely make mistakes. If you could look at this task with a calm, clear, present and engaged mind, you will be more efficient and effective and you might even find some enjoyment in the process.

So if you managed to read to the end of this post without doing other things — good for you! If on the other hand, you had to come back to it a couple of times, don’t feel bad. Maintaining focus and interest on one task at a time is not easy. Whether we work in highly-demanding environments or are doing tasks that aren’t particularly stimulating, we can all benefit from training ourselves to be more mindful about where and how we place our precious attention.

My Treasured ‘Never’ Tattoo
“I will never get a tattoo!”

That’s what I said when college classmates impulsively emblazoned heart, dolphin and butterfly tats on their thighs, ankles and shoulders during inebriated spring-break festivities. I reiterated the sentiment each time a friend inscribed her soul mate’s name on her body, only to later be dumped by her Prince Charming. I’ve repeated the vow whenever I’ve heard people describe the discomfort associated with getting inked.

Honestly though, I think the biggest reason a tattoo never appealed to me is because I’m no good at committing to anything long term. For instance, every time I’ve gotten a perm, I’ve immediately run home and massaged half a bottle of conditioner into my hair in an effort to relax the curls. Lest we forget that the whole point of perming straight hair is to make it curly.

But here’s the thing: I’m a realist. I understand that if were to get a tattoo and regret it, I cannot simply scrub my skin with a bar of Lava soap. My choice would be there to stay — like a “forever perm.” Yikes.

“Forever” is a long time, so I don’t use the term lightly. Last year, however, something happened in my life that forever altered the fabric of my soul. My mother was my hero, my best friend, my confidant and my trusted advisor. She was my shopping buddy, my partner in crime, the person with whom I most often both laughed and cried. Moreover, she was a generous, caring grandmother to my two boys, ages 3 and 9, as well as my brother’s three children. In short, she was the sunshine of my world, until the chemicals inside her brain got all screwed up, throwing her into a downward spiral of clinical depression. Then, swiftly and cruelly, like a fierce tornado looming in the sky, Mom’s sunshine was snuffed out with a sinister force. On April’s Fools Day of last year, my dad called to tell me that Mom had ended her life.

Following Mom’s suicide, my brain stuttered as I repeated, like a broken doll, “I don’t know what to do.” I was paralyzed. Unable to move. To think. To sleep. To breathe. Tasks that once seemed easy were now difficult. And those tasks that were once difficult now seemed impossible. Moving forward without my mom in my life was a monumental chore.

In Mom’s profound absence, I lost all sense of identity. Who was I without my mom? I didn’t know. As a result, my universe turned disjointed and unstable. Week on week, I muddled along, but I wasn’t really living. I certainly wasn’t embracing or enjoying life because I didn’t know how to anymore.

Then six months after Mom died, I came across the beautiful French phrase, “Tu me manques.” Its literal translation is “You are missing from me.”

Ding, ding, ding!

It was as if a bell went off inside my soul.

Since Mom had died, I had lost the rhythmic beating of my own heart, but these three foreign words spoke to me, and a thumping returned in my chest.

I felt like a kid strolling the toy aisle, spotting a coveted treasure on the shelf and declaring with breathless anticipation, “Oh, oh! I must have that!”

I knew that every second of every day for the rest of my life, I would feel that Mom was missing not only from my world but also from my being. Suddenly the notion of having a “forever perm” inked on my arm sounded like a fabulous idea.

I opted for a wrist tattoo because I wanted it to be easily visible to me. Unfortunately, I read that the wrist is one of the more painful locations due to the high number of nerve endings that lie there — not to mention that there’s no fat to pad for pain. I rationalized away my fear by telling myself that if I could handle childbirth, getting an itty-bitty script tattoo would surely be a breeze.

I recruited my friend Jen to join me at the tattoo parlor for moral support. I sat down in the chair, extended my left arm for the artist and looked straight into Jen’s eyes. I inhaled deeply and exhaled slowly in an effort to relax.

The moment the artist began, I realized that perhaps I had underestimated my tolerance for pain. After all, with childbirth I was given an epidural. I tried to play it cool as beads of sweat dripped down my cleavage.

I’m not gonna lie. It was not pleasant. The good news is that it was over in 10 minutes. But even if it had taken 10 times 10 minutes, the end result would have been worth the discomfort.

As I admired the heartfelt sentiment scrawled across my dainty wrist, a fast, fluttery sensation tumbled through my tummy. I realized that this was the first time I had experienced genuine excitement since Mom had died.

“You did it!” Jen exclaimed.

With my thumb, I lightly caressed the new dark lettering on my skin and my lips curled into a gentle smile.

“I hope people ask me about it,” I said. “It’ll give me a chance to talk about Mom.”

“So, what’s next?” Jen asked with a sly smirk. “Maybe a heart on your back? A dolphin on your ankle? A butterfly on your shoulder?”

I shrugged and smiled.

I had learned to never say never.

The A, B, ZZZs of Yoga

A Yogi’s Guide to Sound Sleep
Have you ever glanced at the illuminated numbers on the clock near your bed and thought in shock, “It’s already 1:30 a.m. Crap! I have to get up at 6:30 a.m. If I can just fall asleep right now, I’ll get five hours of rest.” As you lie restless, you try to convince yourself that you can function on five hours of sleep — yeah, right! You tell yourself this again at four hours, and then at three hours before you have to roll out of bed, until you start to get, dare I say, agitated and angry. Lord knows that won’t help your cause.

Sleeplessness can be caused by a lot of things. Sometimes, it’s a mind that won’t let up. Your mind might be worried and frightful, or it could be so full of joy, happiness and excitement that it won’t slow down, much less become still enough to let you get some shuteye. It doesn’t matter whether you’re thinking about a pending disaster or anticipating the best day of your life; you need your sleep, and to get it, you need to quiet that monkey mind. So how do you deal with a busy brain that won’t let you get to sleep? My go-to nightcap is yoga. It’s kind of like that warm glass of milk that helps you wind down and get ready for bed.

One of the main reasons yoga works so well as a sleep aid is that it releases your tension. Tension is anti-sleep. If you practice yoga, you can learn to release that stress, and also tune yourself into the habits that keep you from hitting the hay. But yoga doesn’t just hush that monkey mind. It also triggers the parasympathetic — “rest and digest” — system in the same way that a few ZZZs do. By jump-starting parasympathetic activities like energy conservation, digestion and slowing of your heart rate, yoga can help you get ready for that much-needed shuteye. Studies have even shown yoga helps decrease insomnia.

Ready to start using yoga as your sleep aid?

First you need a plan, a ritual. Here’s what works for me: Say you want to get to sleep by 10 p.m. By 7 p.m., stop taking in stimulants like coffee, alcoholic beverages and sugar. Also steer clear of heavy meals. Kill the TV by 8:30 p.m. I know, Breaking Bad and Dexter come on at 9, but you got TIVO, don’t you? Keep your tube time to the daytime. Once the TV, laptop, tablet and phone are all dark, break out your yoga mat. Now, start the 90-minute advanced Astanga series. (Just kidding.) Relax, you’re just going to do about 15 minutes of gentle forward bends, seated and supine postures, all with deep breaths designed to illicit the relaxation response in your mind. Whereas back-bends are exhilarating and standing poses are powerful, the gentle poses in this sleep routine make you do what gravity wants you to do anyway: move without exerting a ton of effort. Free your mind and your ass will follow, and much needed sleep will come.

Here’s the yoga:

Stand with your feet hips distance apart at the back end of your mat, with your hands resting on your hips. Take a deep inhale and on the exhale, hinge at the hips and fall forward into a forward bend. Your knees should be softly bent to support your lower back and hamstrings. Take 10 breaths with your head hanging with gravity. Imagine all the busyness dumping out and dissolving into the floor while you empty your mind and melt your body. From your forward bend, walk your hands out into downward facing dog. Take five to eight breaths, not working too hard. You’re doing this just to take the edge off and burn any excess energy that may be keeping you from sleeping. You’re not trying to get stronger or fitter in this practice. You’re trying to relax.

From down dog, drop to your knees and take child pose for 10 soft breaths. Feel your body soften and your mind start to surrender. As you come out of child pose, find your way into a seated posture. Bring the soles of your feet together in Baddha Konasana and gently drift into a forward bend. Take a few deep breaths. After cobbler posture, release both legs straight out in front of you for a long-held forward fold, 10 breaths at least. Move into a supported shoulder stand with a bolster. Better yet, move to the wall so you can stay for 10 breaths without working too hard. Lowering from should stand, take a gentle leg across body twist on both sides. Find your way to Savasana (corpse pose).

Here is the one time falling asleep in Savsana is not a bad ending. Stay in corpse pose until you feel ready for sleep. Move slowly off your mat. If you’re not quite ready for bed, have a bedtime tea and spend five to 10 minutes in mediation. Whatever you do, please don’t turn the gadgets back on. You’re free, for now. Practice that easy routine every night, and you’ll be the next Rip Van Winkle — minus the bad hair and the halitosis.

‘Just Keep Truckin’ On’
As I sit here my mind is a windmill spinning out of control. Trying to grasp all of the to dos and place them in an orderly fashion in my minds filing cabinet. It is time for my nightly mindless activity of folding laundry to calm my being. Living life as a party of five I have succumbed to the fact that there will always and forever be heaping piles of laundry. So, I have turned this negative into a positive and use it as a meditation of sorts. To calmly sit on the floor and clear my head and stop the wave of being overwhelmed rush over me. Tonight I have to dig deep to keep forging ahead despite entrepreneurial hardship. But when, if ever, is it time to throw in the towel?

Having the entrepreneurial spirit is an amazing thing. I would never want to relinquish the tenacity, unwavering belief or the gifts it has given me. It has always pumped through my veins and is something that you just can’t quit. It is in the fabric of my being. Since I was employable, I was planning my own endeavors. I have NEVER worked a job that I received by means of a help-wanted sign, by responding to a classified ad or by an online job search. I have always tried to stake claim with jobs I wanted instead of a job that was needed. Making appointments with companies that I wanted to work at and then proposing an offer of employment, defining a job, its duties and showing my value has always led to offers and wonderful careers building lasting relationships. Maybe this has hindered me, or maybe it has taught me how to stretch, struggle and survive. Being an entrepreneur can also be exhausting and lonely. When projects are juggling in the air, the money is leveraged to the max and the nay-sayers start chiming in is when you have to keep truckin’ ahead, holding on for dear life. But at what cost do you keep pushing forward?

Sacrifice is a part of life. Some people cannot stomach the struggle sacrifice bestows and that is okay. We are not all built the same way. Personally, sacrificing nightly TV, “me” time, and other luxuries of time is a no-brainer. For me, succumbing to 9 to 5 would be a tap-out. I could go out tomorrow and become an employee at a fabulous firm affording me a healthy lifestyle. Initially, it would be great but it wouldn’t be long before the alarms were blazing and I was on the ledge of spiritual suicide. Throwing in the towel and conforming to the daily grind is not an option for me. My smile would lessen and my light would diminish. I would be locked into the person that I had become instead of the person I was and meant to be. But is it all just a waste of time?

Without all of my projects, partnerships and purposeful missions I would still be a stay-at-home mom. I would have time to relax more, I could go to the gym and get my nails done, I may even have time to get a little more organized (highly doubtful), but all of those things are salvageable. I sacrifice for the cost of the highs and lows of being an entrepreneur. Chasing dreams has afforded me the ability to stay home and be an active participant in all of my son’s therapies. It has allotted me the time to get my son and daughter on and off the bus. These things you cannot put a price tag on. Being an entrepreneur, I know risk without reward, but every day I am paid dividends by my projects. So where do you go from here?

Some days I feel like I’m floating on water and other days I feel like I am stuck in the mud. I accept and acknowledge the highs and lows and try not to get stuck in the later. Mentally and emotionally I try to block negativity and will endlessly search for creative solutions for obstacles that arise. I am happy to do things that don’t feel like work. I am grateful that I don’t stop thinking and trying. I would rather stand alone knowing my worth than standing in a lineup waiting for someone to tell me their opinion of my value. Some things grow and some things don’t, but I will never stop planting seeds.


P.S. Embrace that child-like spirit when you believed anything was possible. If we teach our children to believe then we should as well. Chase dreams. Believe. Remember.

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