Lost – When Night Falls Again and Again

“I can’t eat and I can’t sleep. I’m not doing well in terms of being a functional human, you know?”

~~Ned Vizzini, “It’s Kind of a Funny Story”

 

“When you’re lost in those woods, it sometimes takes you a while to realize that you are lost. For the longest time, you can convince yourself that you’ve just wandered off the path, that you’ll find your way back to the trailhead any moment now. Then night falls again and again, and you still have no idea where you are, and it’s time to admit that you have bewildered yourself so far off the path that you don’t even know from which direction the sun rises anymore.”

~~Elizabeth Gilbert

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With new crises seeming to develop on a daily basis across the globe, our news cycle is in overdrive, and critical conversations that had been taking place are quickly overshadowed by more recent developments.  Just last week, the nation was discussing the loss of renowned comedian Robin Williams to the tragedy of clinical depression and suicide.  I would argue that the questions raised by his death represent a conversation that must continue even as we focus on other critical events requiring our attention.  My hope is that the below will play even the smallest part in that–and that it will well be worth sharing this if it assists even one person …

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Like so many others this past week, I was shaken by the news of Robin Williams’ tragic death.   Thinking of the depths of his despair is simply devastating.  And the misunderstanding, cruelty, and ignorance some showed following this news were and remain bewildering and heartless.  But even in light of such shameful behavior by some, what gives one heart is part of the legacy that Mr. Williams left as he passed—the honest, profound conversations that have been taking place by so many talented writers and bloggers who are openly sharing their own experiences with depression.  With their thoughtful words, they have drowned out the angry and ignorant shouts of the foolish and have begun to bring understanding of just what depression is and why it is so crucial to receive help … because the sad truth is that there are so many misconceptions about depression, and there are so many things that depression is not.

It is not “feeling sad.”

It is not something that can be addressed by simply “trying harder” and “just getting over yourself and cheering up” (“advice” that some folks may give, which actually does much more harm than good).

It is not something others can truly understand if they have been fortunate enough never to have experienced depression themselves.

It is not a condition that can be solved by another’s judgment.  Unfortunately, some may try to help by saying there are “so many others out there who have real problems” and “much more difficult lives,” but “they’re doing fine, and after all, you’re so lucky.”  Lucky?  Is there another word in the English language that has been misused by so many?

What clinical depression IS:

A serious mental illness that can be life-threatening.

You can probably tell that I have some anger about the misunderstandings surrounding depression, and that’s another reason why I feel it’s so important that this public discussion has finally begun to take place.  And yes, this is personally driven as well.  My family and friends will tell you that I used to be an extremely anxious person.  And that would be an understatement.  I was painfully shy, found it difficult to meet new people, dreaded any situation where I had to make “small talk,” and was enervated by any situation where I needed to be “on” for any length of time.  Just one example: Shortly after I’d started a new job, I learned that I had to give a presentation at a conference six months later as a staff member—and I was a mental and physical wreck for all six of those months, absolutely dreading having to give that talk.  If I was worried about something—and I was always worried about something—I’d go over it again and again, assessing and turning round and round every terrible possibility—until I was in full-blown catastrophizing mode.

Having such anxiety in and of itself was beyond awful.  But then in my 30s, I found that there was something even worse.  For quite some time, I’d been feeling not only anxious but “truly down.”  But it was much more than that.  Everything around me had begun to go gray, and I could see no colors in my life.  I had absolutely no interest in food, and my husband found himself begging me to please just eat something.  I went down to 90 pounds, because I just couldn’t do it.  I was completely exhausted and had no energy, and I’d become a terrible sleeper, never getting sufficient rest, because my mind was far too busy with its catastrophizing.  I had a wonderful husband and family who loved me, and I had survived a diagnosis of stage 3 Hodgkin’s lymphoma in my early 20s.  I knew how fortunate I was.  But over time, I had developed such deep anxiety that it led me into the quicksand and hopelessness of depression.

After far too many months, I finally heard the pleas of my husband and family and went to see a doctor, who immediately prescribed an SSRI.  My first instinct was to strongly resist this, but I realized that I had to do something, because the quality of the life I had fought for so hard in my 20s was of no quality at all.  But the effect was not what I’d anticipated or hoped:  the specific medication I’d been prescribed almost immediately caused me to develop frightening adverse effects.  Within a day, everything around me felt unreal, as if I were looking through a glass haze.  When I spoke, it was as if I were talking under water, and I was uncertain on my feet.  And with every day that went by, the haze became worse, and this scared the hell out of me.  But I guess that the “good news” there was that by feeling frightened, I was feeling something, where before there had been nothing but numbness and absence.  When I called my doctor about the side effects, he asked me to stop taking the medication immediately.  Though he wanted me to try a different medication, I was simply too frightened to do so.  Even so, this experience somehow loosened depression’s grip on me.  Maybe it truly was the deeply disturbing side effects and the fear they caused.  Perhaps it somehow reminded me that I did care about my own well-being, and I wanted to feel “like myself” again.  Though it took time, I eventually felt that my eyes were completely open again, I began to see colors emerge from the gray, and I realized that hope and enjoyment had again entered my life.  My anxiety was still a part of me, but its hold on me had lessened and with that the tidal wave of depression had receded.

But depression wasn’t done with me.  If you’ve read my  blog before, you know that I was diagnosed with breast cancer in my early 40s—yet it wasn’t the diagnosis in and of itself that caused depression to re-enter my life.  I had already undergone my bilateral mastectomy and was just a few weeks into chemotherapy when I began to have terrible, painful side effects from medications I received with my chemo regimen.  The pain soon became so horrendous that it was difficult for me to do even the most routine things, and all I could seem to focus on was how miserable I was and how hopeless everything seemed.  I hit rock bottom when I was in my oncologist’s exam room, sobbing as I told him about what I had been experiencing.  I told him that I couldn’t bear it, that I simply couldn’t go on like this.  But what I didn’t say was that for the first time in my life, I finally understood the true meaning of despair.  Though I did not speak these words, my oncologist heard them anyway.

He immediately started me on symptomatic treatment that gradually reduced and, with time, eliminated the terrible side effects, all while continuing my chemotherapy.  And just as importantly, he gently encouraged me to begin treatment with an SSRI (selective serotonin reuptake inhibitor).  But he knew me so well: that I would be extremely resistant to doing so (even though I hadn’t told him about my previous experience).  He understood that I was tired of being on so many medications and that the last thing I wanted was to add another chronic med to my regimen.  When he recommended beginning this medication, I immediately shook my head, but he asked me to hear him out.  He talked about the fact that I would be starting Tamoxifen® shortly after completing chemo and that I could very well develop difficult hot flashes as a side effect. I didn’t immediately understand the connection there, but he explained that getting started on an SSRI could help to prevent or minimize the hot flashes associated with Tamoxifen.  That was an explanation that resonated with me.  But then he added with a grin that the specific medication he was recommending also had the benefit of “taking the edge” off any anxiety I may be experiencing: yes, he saw me so clearly.  An extremely wise man, my oncologist.After a few weeks, I realized that the edge had indeed been taken off of my ever-present anxiety, and the terrible side effects that I’d been experiencing had almost ceased entirely, along with the sense of hopelessness, depression, and despair that had accompanied both.  And as the weeks turned into months, I gradually came to realize that something was truly different—and was actually missing.  Although I was still receiving chemotherapy, though I was exhausted, though I was bald … I was not anxious!  For the first time in my adult life, I was experiencing life without anxiety as my constant companion … and it was and still is indescribably wonderful.

I am absolutely not one to see medication as the complete answer to everything.  But my anxiety had a physiologic basis that was effectively treated with medication, by slowing and balancing the absorption of the neurotransmitter serotonin in the brain.  (Serotonin is thought to play an important role in regulating mood and anxiety.)  But what of my experience with the other SSRI years before?  All medications may cause side effects, but some SSRIs are more likely to cause specific ones.  Particular SSRIs may tend to be most effective without causing intolerable side effects.  Yet with that said, one SSRI that works well for one patient may not for another.  The SSRI I’d received years ago had a chemical structure unrelated to that of the other SSRIs, and perhaps that’s part of why it affected me so differently from the subsequent medication.  And we know that a person’s genetic makeup impacts his or her response to particular medications, including the agent’s effectiveness as well as the risk of developing particular adverse effects.  In fact, there is a rapidly developing field of study, pharmacogenetics, that focuses on the variations in drug response due to a person’s genetic makeup, which impacts the activity of drug-metabolizing enzymes.  For example, if a person metabolizes particular drugs slowly, they may require lower, less frequent doses to prevent toxicity.  So likely that original SSRI was simply the wrong drug for me, or the wrong dose, or both due to my genetic makeup.  Finding an effective medication with few or no adverse effects may often be a process—one I wasn’t willing or able to do years before.  Yet this time, thanks to the wisdom and gentle encouragement of my oncologist, I was.  By hearing the words I didn’t say, he gave me a gift.  Because the effect of this medication—at such a tiny dose—ultimately gave me myself back, a self without the horrible burden of a constant anxiety, an anxiety that at any time could whirl into the black hole of depression.  (Also of note is that I ultimately had very few hot flashes  after starting the Tamoxifen.)

So my heart breaks when I learn that anyone is affected by the terrible burden of severe depression and anxiety and knows the depths of the abyss that comes with despair.  It is stunning to many of us that Mr. Williams—one who brought such joy and laughter throughout his life—struggled with depression “behind the music.”  The media has reported that he had been affected by depression for many years—and that more recently, he had had open-heart surgery as well as the initial symptoms of Parkinson’s disease (PD), both of which alone are also strongly associated with depression.  Though the reason for this is tragic, the nation is finally having a long overdue conversation concerning clinical depression and anxiety as common, potentially underdiagnosed and undertreated symptoms in patients with Parkinson’s disease.  Just as tremor, rigidity, and slowness of movement are clinical symptoms of PD, for more than half of PD patients, clinical depression and anxiety may be as well.  In fact, research suggests that with PD and other chronic neurologic conditions, such as multiple sclerosis, the disease process itself may cause changes in the brain that lead to depression.  This national discussion is serving to raise awareness of the possibility of PD-related depression and why it is so critical to discuss such symptoms with a physician for appropriate diagnosis and treatment.  Fortunately, recent research has increased our understanding of depression in PD and improved treatment options for patients.

It’s also important to note that any chronic illness may trigger depression, and overall, it’s estimated that up to one-third of people with serious medical conditions have symptoms of depression.  In addition, per the National Cancer Institute (NCI), “Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients…Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.

Of course, everyone would agree that it’s normal to feel sad and extremely upset after being given a diagnosis of cancer, PD, or any serious and/or chronic condition.  But some folks have greater difficulty in adapting to their diagnosis than others, and the symptoms of depression are different from the frustration, worry, and grief that can be felt after receiving such a diagnosis.  Rather, there are recognizable symptoms of clinical depression that should be diagnosed and treated.  As noted by the NCI in its PDQ® monograph on depression: “A critical part of cancer care is the recognition of the levels of depression present and determination of the appropriate level of intervention, ranging from brief counseling or support groups to medication and/or psychotherapy.” The NCI indicates that clinical or major depression has symptoms that last longer than 2 weeks, which may include the following:

  • Feeling sad most of the time
  • Loss of enjoyment and interest in activities that previously were pleasurable
  • Changes in eating and sleeping habits
  • Nervousness
  • Slowed physical and mental responses
  • Unexplained tiredness
  • Feelings of worthlessness
  • Feeling a sense of guilt for no reason
  • Inability to pay attention
  • Frequent thoughts of death or suicide

If you are experiencing any such symptoms, please make an appointment with your doctor.  Or if a loved one or friend has symptoms, strongly encourage him or her to see a doctor.  And please remember: You, your loved one, none of us is alone.

“… if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?— Carpe— hear it?— Carpe, carpe diem, seize the day boys, make your lives extraordinary.” 

~ Professor John Keating (Robin Williams), from the movie “Dead Poet’s Society”

May you rest in peace, Mr. Williams.

–> Help for Mental Illnesses

–> Online Behavioral Health Treatment Services Locator

–> If You, a Family Member, or a Friend is in Crisis and Needs Immediate Help

Preserving Hope: Our Caregivers’ Journeys in the World of Cancer

Many folks might not understand this.  But I’ve lost track of how many times I’ve thanked God that I  and not one of my loved ones was the cancer patient.  After being diagnosed with lymphoma shortly after college, cancer shaped my life.  As I’ve said many times, being a cancer survivor has impacted every adult decision of my life: staying in a job that I disliked far too long due to fear of being without health insurance, my decision to become a medical writer, when to get married, and on and on.   But I’ve had to be matter-of-fact about this.  Cancer, its late effects, what seems like my bimonthly thyroid biopsies, the number of daily pills I’ll always have to take, my long list of specialists—it’s simply my reality.  But that’s okay.  Long ago, I subconsciously made this one of my roles: I took on the role of cancer patient, the one with the chronic health issues in my family, with the understanding—or perhaps more accurately stated, the magical thinking—that I gladly accept this role to protect any of my loved ones from EVER experiencing cancer, cardiac issues (another of my late effects), or any serious chronic health issue.  My message to myself was “I’ve got this.  I’ve got my family covered.”

Magical Thinking

My mother helped me to understand this at a more conscious level just last year, one which was  very difficult for my family.  I have two female first cousins, one on my mother’s side and one on my father’s side—and in one year, they both were diagnosed with stage 3 HER2+, ER+ breast cancer at the age of 49.  I was never angry about my own cancer diagnosis: the first time, my thought always was, “Well, why NOT me?,” and the second time I’d long understood that I had a greatly increased risk for breast cancer due to my radiation treatment as a young woman.  But when I learned that my first first-cousin had just been diagnosed, I was distraught and absolutely furious.  I literally screamed when I heard the news.  And when I learned a few months later that my second first-cousin had been diagnosed as well, my anger and distress were even blacker and deeper.  I couldn’t understand my reaction, and I pushed it down deep, because it was critical to me to be strong for my cousins and able to have my “advocate hat” firmly in place to provide all the possible information, resources, and support I could for them both.  But in talking with my mother one day, I shared with her how deeply furious I was that they were both going through this and how confused I was about feeling this way.   She said that she had the answer, asking “You don’t remember what you said to me, do you?”  Of course, I’m notorious among my family for not remembering anything (thank you, “chemobrain” parts 1 and 2), so we chuckled over that.  She then explained that shortly after my breast cancer diagnosis, she’d asked me why I wasn’t angry about being diagnosed now for a second time.  And she reminded me of my answer: “You said that as awful as it was, you knew you’d get through it, and you weren’t at all angry because, after all, that must mean that you had the family covered.”

Downcast

And that’s true: I continue to pray every day that that’s IT—that cancer has learned now who’s boss and will not DARE touch another of my loved ones.  This may explain why I was so struck by something a fellow cancer survivor and advocate said during a panel discussion last year, where we were both participating as Patient Advocate Fellows during the Drug Information Association (DIA) annual meeting.  When my new friend and colleague, Deborah Cornwall, began her portion of our panel’s presentation, she explained that she was a breast cancer survivor, but that her own “brush with cancer was trivial” compared to the caregiver and patient stories she’d had the honor of hearing while working on her recent book, “Things I Wish I’d Known: Cancer Caregivers Speak Out.”  She explained that although there were so many books for the cancer patient, as there should be, there were very few for the cancer caregivers–for the spouses, the parents, the children, the siblings.  As Deborah discussed her book, its purpose, and the meaning that it had for her and the many caregivers she interviewed, I was deeply moved, thinking about just how important this book was—that in addition to the patients themselves, it’s just as critical that the loved ones who are caring for them receive the support they need and how cancer also turns their worlds upside down.

A few weeks following the conference, Deborah graciously agreed to an interview, during which I asked her about the genesis of her book, any critical overarching themes that arose while speaking with the caregivers, and the experience itself of speaking with so many people about what was often the most heartbreaking time of their lives.  Following is some of the conversation that Deborah and I had, including several quotes from Deborah and the caregivers themselves.

Cancer Caregivers Speak Out

“Why do people love firemen? People love firemen because when everyone else is running out of a burning building, they’re running in.  It’s easier to run away.  Caregivers are running into the burning building…”

~Chuck’s Mother

In the introduction of Deborah’s book, she shares the following, describing the beginning of the caregiver journey:

“Most caregivers describe their reactions to a loved one’s cancer diagnosis in violent terms: a fast-moving or violent physical assault, a punch in the stomach, a car hitting a deep pothole at high speed, a hijacking, an earthquake, a lightning strike, or a vicious animal bite.  A few mentioned a sensation of being frozen and unable to move, or feeling as though a rug had been pulled out from under them.

“If you have been suddenly thrust into the caregiver’s role, you may have experienced similar sensations when a loved one or close friend received the cancer diagnosis.  There’s so much information coming from all directions that you may feel overwhelmed, angry, or bewildered. ‘Normal’ has just disappeared from your life.  You may be fantasizing that you’ll wake up tomorrow and find out that this was all a bad dream.  You may even feel resentful: After all, you didn’t sign up to set your own life aside to become a caregiver.

“Your emotions are real, and confronting them is the first step in coming to grips with your caregiver role.  You’re probably wondering how this unexpected journey will go, and how it will end.  You may be looking for support, guidance, or help—perhaps for the first time in your life—at the same time that you’re uncertain where to look, or even what to ask for.

“That’s another reason why I’ve written this book.”

“In reading about the key issues you’re likely to face and what others did when encountering similar situations, you’ll have the opportunity to learn from their approaches and use them in creating your own solutions to your unique caregiving challenges.  While this book won’t serve as a complete ‘how-to’ guide or steer you to every resource you might need—caregiving often requires invention under pressure—it will provide guidance and build your confidence in inventing your own way.

“I was honored that the people I interviewed chose to share their stories and life lessons.  Their candor and intimacy were unexpected gifts that enriched my life immeasurably and made this book a reality.  In turn, I share their reflections with you in the belief that they will help you on your journey.  Their hard-earned insights, their indomitable hope, and their desire to help others to stay focused in the face of adversity represent their way of giving something back to those who helped them.”

~Deborah Cornwall, Marshfield, Massachusetts, 2012

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Our interview began with Deborah’s sharing how “Things I Wish I’d Known” came to be:

“Writing a book of some sort actually came from my aunt, who is 95 years old now.  So she was about 91 when the idea came up.  I was talking with her about various experiences that I had had at Hope Lodge, [which provides] free lodging for cancer patients and their caregivers who come in from more than 30 miles away for regular care for cancer treatment…I had been involved on the American Cancer Society Board of Directors in New England when we decided to build the [Hope Lodge in] Boston.  I kind of adopted it personally.  My husband and I would go there periodically to serve holiday meals, because our daughter lives elsewhere and can’t always be with us.  While there, I would always meet people whose stories were just amazing and far more dramatic than my own.  Afterward, I would share them with my elderly aunt on the telephone.  Then one day, she said, “You have got to write a book” … I kind of pooh-poohed it, because your relatives always believe you can do anything.  But a few weeks later, after the idea had had time to germinate,  I realized she was right.”

Hope LodgeIn thinking about the shape that the book would take, Deborah realized that there were few books that specifically focused on the stories of the cancer caregivers, how they coped, what resources were most helpful to them, and, upon reflection, what they wished they had known beforehand but learned only in the midst of their experiences as a caregiver.  So that is the book that she wanted to create.  Deborah noted, “That’s when I charged off on my own and said, ‘Okay, I need to find people who are willing to talk to me.’  She explained that with HIPAA (the Health Insurance Portability and Accountability Act) privacy regulations, “that’s a bit tricky.  So I needed to spread information out in the right places and let people know how to contact me if they were interested in talking about their experiences.”

ConnectionsDeborah stressed that the sourcing of interviewees was itself a fascinating process.  “I think the most interesting piece of it was that in addition to posting invitations at several of the Hope Lodges, I would also send out waves of emails to groups of my own contacts,  asking them to spread the word.  I got a phone call one day from a woman who had received my email, which I’d sent to someone out of state, who forwarded it to somebody else in another state, who in turn forwarded it to the woman who called me.  It turned out that on the third forwarding, it went to [this woman] who lives five minutes from my house!  Isn’t that bizarre?  So there are all sorts of fascinating procurement stories in terms of finding these people.”  Deborah went on to share another example of such serendipitous connections: “I received a phone call from a woman who had just lost her husband.  [She’d been] in a park walking with her daughter and newborn son, and a friend of mine happened to be passing through that city when they met and created the connection.  This woman has sustained our relationship and become a good friend. There were all sorts of really random types of connections, but essentially, when I got to 86—and there was nothing magic in the number–I thought to myself that I’m hearing the same things frequently enough that I believe I have enough to work on.  So that was the genesis.” In the second edition of the book, Deborah added another nine conversations focused on healing, bringing the total to 95.

Deborah emphasized how moved she was that so many caregivers were willing to speak with her for her book.  “I was stunned at how eager people were to talk and how much they wanted to share with me, usually as a complete stranger.  Two-thirds to three-quarters of the caregivers were complete strangers with not even a personal referral connection, not even a mutual friend . It was really stunning to me how eager they were to pour out their most intimate life stories.  And what it said to me once I got going was just how important they thought the book could be.”  She also noted that during their caregiving experiences, “some of these caregivers were deserted by people they thought they were close to.  So I think that in some ways, that made them want to talk about it more, because family members or friends didn’t know what to say and didn’t know how to have a conversation about what the caregivers were going through.  In a way, to talk to a stranger who really wanted to know what happened was nourishing to them.  After one particularly moving conversation, one interviewee said he felt better because it felt as though he’d just been to therapy.  It had presented the opportunity to voice things that he’d kept inside since his wife had died. I think that the interviews did allow people to get in touch with how they had really navigated the experience when maybe they really hadn’t had the opportunity to reflect on it before.”

In fact, folks were so open to speaking with Deborah about their caregiving experiences that her first interview for the book occurred even before she thought she was prepared.  “My first interview was with a woman I’d known for years who was on the staff of the American Cancer Society.  Just before a scheduled meeting started, I [mentioned] to her that I was writing a book on caregivers. Her immediate response was, ‘Oh, I’m a caregiver.  Talk with me!  I have time right after the meeting is over.’   My first thought was, ‘So soon? I haven’t even finished the interview guide yet!,’ but I did it.  Her story was a rich one. She had been the primary caregiver for her father, who was dying of cancer, and at the same time for her mother, who was having a nervous breakdown. My friend was a single mother of two young children, she had two siblings who were uninvolved, and she was trying to work at the same time.  At one point, I asked her, ‘Where were your siblings?  Did they ever ask how you were doing during this whole process?’  It took her several minutes to respond. Then she looked at me with these wide deer-in-the-headlight eyes, and all of a sudden, tears started rolling down her face.  That’s when I realized that I was on to something really important.”

Deborah shared that when she completed and submitted the initial draft to her professional editor, his feedback was positive, yet she was taken aback when he stressed that, ‘It’s only twice as long as it can afford to be to get read.’  She stressed that pruning down the stories she shared was an extremely emotional process for her, because “I feel like I still carry their stories with me all the time.  They shared so much of themselves that I really felt that I owed them to tell their stories.”

Overarching Themes Expressed by Caregivers

When I asked Deborah whether any themes emerged when speaking with family caregivers, she noted that there were several:

“Yes, the first was control, a theme that really permeated every conversation:  the feeling of loss of control.  As you grow up, you develop a profession, you buy a house, you get married, and somehow you start believing that you actually have some control over your life.  Then, all of a sudden, when you’re told that you or a loved one has cancer, that sense of control is gone.  That theme was particularly significant for some of the male caregivers.  I had a couple of them who described themselves as control freaks who had to learn to let go of the fiction that they had any control.

“The second theme was the need to somehow preserve hope and, even for those who were told that they were in very dire straits, to see their situation in a more positive light.  When one was told that x percentage of people only survive a certain period of time, she and her husband said, ‘Fine:  we’ll be in the other percent.’  Even if it was a mind game, these caregivers found some way to create some hope in the situation, but also to make sure that today was a joyful day, that there was something today that I could do to help the person not just get through the day, but really enjoy the day.  And for many of them, that was hard.  But you know, there were several stories of people dying at home, where even the death experience was turned into something that would feel positive and in their control, as opposed to being in a hospital, where you couldn’t control who was coming in and giving you shots and doing all sorts of things.

“The third theme was isolation–the feeling that so many of the caregivers had of being cut off from the people they used to see often. I called those people ‘pull-aways,’ the friends who didn’t know what to say or do, and so didn’t talk about it or didn’t make contact as they might have back before the cancer diagnosis.  And there were some situations where the patient was too sick to go out, and so the caregiver’s solution for overcoming isolation was to invite friends in, but to be very clear about when it was time for them to go.  The caregiving experience changed caregivers’ social patterns, but they really felt its absence unless they invented new ways to interact with friends.

“[Another important] piece was normalcy.  People wanted so badly to get back to normal, and yet there was never going to be a normal again. Maybe a new normal would evolve, but life would never go back to the pre-cancer world.”

Deborah also noted that when reflecting on their experiences as caregivers, “All noted that their caregiving had enriched their lives.  It really did.  And I was really surprised when I asked them, ‘How are you different?’ I just didn’t know what I was going to hear.  It was encouraging and also really striking how many of them engaged in an activity that will in some way give meaning to their caregiving experience, particularly if their loved one died.  Even though this matched my own experience, I didn’t realize just how widespread that giving-back phenomenon would be.  Sometimes it’s focused on a specific type of cancer, such as leukemia or lymphoma.  Sometimes people actually created a new foundation, like two caregiving families living next door to one another who together created a brain tumor organization to benefit a local hospital, for example.  It’s fascinating to hear the creativity people use in determining how to get involved and how they want their loved one either to be honored or remembered.”

I asked Deborah if hearing such emotionally trying, heartfelt stories was ever difficult for her both as an interviewer and as a cancer survivor herself.  She agreed that it was:  “A couple of times, I did break up on the phone, and I apologized.  But I found it didn’t matter to the interviewee.  In fact, it revealed that I cared.  I always felt self-conscious about it, but it turned out to be okay.  To have them talking about the last minutes of somebody’s life and to be able to do so in such a loving and really clear descriptive way, it was hard to imagine putting myself in their shoes and being able to have gone through what they experienced with as much grace.  They really all gave a tremendous gift to me and to anyone who reads the book, because of the raw emotions that they shared.  Equally riveting were their descriptions of their lives afterwards and how they have healed.  I’ve actually written an article about healing and added some of these insights into the second edition of the book, because I think it’s really helpful to those who are still going through the process.”

Starting the Healing Before the Caregiving is Over 

“One of the important things I learned was that people who do it well start the healing process before the caregiving is over,” Deborah stressed.  “And in fact, in some cases, the patient actually helps start that process.  One young man whose mother died described one of her last days, [when she gave] him instructions about how she wanted to be buried.  She asked him to make sure that she was wearing nothing but her full-length mink coat and red high heels!  And that’s what he did.  He can still laugh now when he talks about it, because it was such a funny funny request and reflected so much about her personality.  The other thing she had done that was so fascinating: as an experienced oncology nurse, she surrounded him with many of her nurse friends, so that if he ever had any questions as she was going through treatment, he had this network that could be a safety net for him.  There were several examples of patients who had done something like that.  It turned out to be really important to each caregiver’s healing later.”

The Keys

I couldn’t let Deborah go without asking her about the cover design for her book.  As shown below, the cover displays three large, antique keys that immediately grab the eye.  She explained that “I’d looked at several alternatives, [but] this was the one that struck me.  I think that the keys have meaning in the sense that … it’s almost like there are trap doors throughout the caregiving process.  And knowing what door to open and which key to use, it was almost an analogy of finding answers–‘What’s behind this door? What’s behind that door?’ There are hidden things that you need to find out behind each door.  The key design was really the message of the book and the best way to show it.  Somehow it spoke to me.”

Things I Wish I Knew

Messages from the Caregivers

What better way to conclude than sharing the words of some of the caregivers from “Things I Wish I’d Known: Cancer Caregivers Speak Out”?

“Professional caregivers don’t experience the emotional ups and downs that a family caregiver does.  The family caregiver truly bears the brunt to support the patient in the right ways, not too much or too little.  It’s critical for the patient’s progress.”

~Ellen M, registered nurse and cancer survivor, sharing her perspective on the role of her husband as  caregiver

“Caregivers have a difficult emotional time.  They don’t face the daily adrenaline surge that the patient does, but they have to pick up the pieces when things aren’t going well.  It’s hard for them to know when to reach in and when not to.  They walk a tightrope between letting the patient be in control and being able to take care of them without letting their loved one feel incapacitated.  Caregivers haven’t experienced the physical pain, but they also can’t make it go away.  The caregiver has to be strong, but not overpowering; sympathetic and optimistic, but not saccharine; realistic but not discouraging; upbeat but not inappropriately happy.”

~ Bobbi, long-time breast cancer survivor, articulating the challenge of caregiving

“There’s no better way to learn about dealing with cancer as a caregiver than hearing other people’s stories.”

~ Debbie B’s husband

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The Book

Interested readers can locate Deborah’s book in paperback or electronic forms at the following websites:

“Things I Wish I’d Known: Cancer Caregivers Speak Out”

Amazon.com

Barnes & Noble